Download My Tips For How I Made It Through My Breast

My Tips For How I
Made It Through My
Breast Cancer
Treatments
By Candace Tatton
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
1
Table Of Contents
My Tips For How I Made It Through My Breast Cancer Treatments ............................................ 5
I. Breast Cancer: Warning Signs ....................................................................................... 6
What Are the Warning Signs of Breast Cancer? ........................................................... 6
II.
GENERAL TIPS ............................................................................................................... 7
III.
PORT-A-CATH .............................................................................................................. 13
IV.
CHEMOTHERAPY ....................................................................................................... 14
1. AC ..................................................................................................................................... 14
A. Taste Buds.................................................................................................................... 15
B. Constipation or Diarrhea ........................................................................................... 15
C. Hot Head ...................................................................................................................... 15
D. Chemo headache/migraine ......................................................................................... 15
E. Sinus Drainage ............................................................................................................ 15
F. Hot & cold chills, fatigue, and mouth sores (see mouth sores under Taxotere). .......... 15
G. Watery Eyes ................................................................................................................. 15
H. Nausea .......................................................................................................................... 16
I. Weakened Immune System ........................................................................................ 16
J. Hair Loss – ................................................................................................................... 17
1) Falling Out ............................................................................................................... 17
2) Wig ........................................................................................................................... 18
3) Scarf ......................................................................................................................... 18
4) Heat Loss.................................................................................................................. 19
5) Fake Eyebrows/Eyelashes ...................................................................................... 19
2. TAXOTERE .................................................................................................................... 20
A. Nails .............................................................................................................................. 20
B. Mouth Sores ................................................................................................................. 21
C. Mucus Mouth .............................................................................................................. 21
D. Rash .............................................................................................................................. 21
E. Neuropathy .................................................................................................................. 21
F. Hot Flashes .................................................................................................................. 22
3. CMF ................................................................................................................................. 22
4. Other Side Effects & Tips .............................................................................................. 22
A. Chemo brain ................................................................................................................ 22
B. Bath .............................................................................................................................. 23
C. Weight Gain ................................................................................................................. 23
D. Girls Day Out .............................................................................................................. 23
E. LAUGH ........................................................................................................................ 23
F. Don’t ask “Why me?” ................................................................................................. 23
G. Look for the Positive ................................................................................................... 24
H. Snack & Drink............................................................................................................. 24
I. Blanket ......................................................................................................................... 24
TOP 10 REASONS TO DO CHEMOTHERAPY .................................................................... 24
5. UTAH CANCER FOUNDATION ................................................................................... 25
V. SURGERY ............................................................................................................................ 27
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
2
A.
BEFORE SURGERY........................................................................................................ 27
1. BUY .............................................................................................................................. 27
2. Tissue Expander ............................................................................................................ 27
3. Pain Medicine ............................................................................................................... 28
4. In-patient vs Out-patient ............................................................................................... 28
5. Heart Pillow .................................................................................................................. 28
B. AFTER SURGERY .......................................................................................................... 29
1. Move Arm ..................................................................................................................... 29
2. Lymphedema................................................................................................................. 29
3. MASSAGE ................................................................................................................... 30
4. Oncotype DX ................................................................................................................ 30
A. Fatigue............................................................................................................................... 32
B. Skin and tissue burns. ....................................................................................................... 33
V. HORMONE TREATMENT .............................................................................................. 34
A.
Tamoxifen................................................................................................................... 34
B.
Other Hormone Therapies: Arimidex and Femara and Aromasin .............. 34
Zoladex ........................................................................................................................... 35
A. Prosthesis ......................................................................................................................... 36
B. Insurance ........................................................................................................................... 36
C. Surgical Reconstruction Options ................................................................................... 37
1. Silicone-Filled Implants .............................................................................................. 38
2. TRAM Flap (Transverse Rectus Abdominus Myocutaneous Flap) ............................ 38
3. Free-TRAM Flap (Free-Transverse Rectus Abdominus Myocutaneous Flap)........... 38
4. TUG Myocutaneous Flap (Transverse Upper Gracillis Myocutaneous Flap) ...... 38
5. DIEP Flap (Deep Inferior Epigastric Perforator Flap) ........................................... 39
6. SIEA Flap (Superficial Inferior Epigastric Artery Flap) ........................................ 39
7. S-GAP Flap (Superior Gluteal Artery Perforator Flap) ......................................... 39
8. I-GAP Flap (Inferior Gluteal Artery Perforator Flap) or “In-the-Crease" GAP
Flap 39
9. TUG Perforator Flap (Transverse Upper Gracillis PERFORATOR flap) ........... 39
D. Steps of Breast Reconstruction With Natural Tissue .................................................. 39
VII. NON-TRADITIONAL THERAPIES............................................................................ 45
A. Nutritional Supplements ................................................................................................ 45
1. Max GXL glutathione supplement................................................................................ 45
2. Immu-Cell ..................................................................................................................... 45
3. Cell Detox ..................................................................................................................... 45
B. Alternative Therapies ..................................................................................................... 45
1. Reflexology................................................................................................................... 45
2. Foot Detox or IonCleanse® ........................................................................................ 45
3. TENS Machine (Transcutaneous Electronic Nerve Stimulation) .......................... 46
4. Acupuncture ................................................................................................................ 47
5. Prayer ........................................................................................................................... 47
VII. WHAT NOW? .................................................................................................................. 48
A. Mammogram ................................................................................................................... 48
B. Check-Ups ........................................................................................................................ 48
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
3
C. PET scans ......................................................................................................................... 48
D. Tumor Markers ............................................................................................................... 48
ARTICLE ABOUT GLUTAMINE .......................................................................................... 50
DOOR SIGN ............................................................................................................................. 52
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
4
My Tips For How I Made It Through My Breast
Cancer Treatments
Since being diagnosed with Breast cancer in January 2008, I have had many people ask me about
my experience and how they can help someone in their life who is currently facing breast cancer.
My contact with others going through this may not be one-on-one and even when it is, it is
impossible for me to remember everything to tell them, which is why I put this together so that
women can refer back to it as needed. I have come to feel that one of the reasons I had breast
cancer is so that I can help educate others about early diagnosis and how to deal with the
different treatments. This is a compilation of my experiences.
This is not a medical document. At no time should the content in this document be construed
as medical advice or recommended treatment. Only your personal medical practitioner can
appropriately make recommendations about your care. Many things contained in this
document are a matter of opinion and due to “chemo brain” I may have forgotten or left out some
items. I am also still in treatment. I am currently taking a hormone blocker and a bone
strengthening medication and I have yet to undergo reconstruction. I plan to continue to update
this information as I learn new things.
This is not meant to scare or overwhelm anyone, I apologize if it does. I have tried to include
some references to specific information, websites, and research. These references are marked in
blue where possible. Everything else is a compilation of what I have picked up from numerous
sources over the last year. I have not made an attempt to verify any of this information so check
with your doctors before using it.
Everyone’s experience with breast cancer will be different. There are also many different types
of breast cancer and many different forms of treatment. There is no guarantee that these things
will help you even if they helped me. I can’t stress this enough, please discuss everything with
your doctors before trying. No symptom or problem is too small to discuss with your
Oncologist. He/she should be your right hand man during and after your treatments. If
something is bothering you, don’t wait until you can’t stand it anymore, ask questions. Your
Oncologist may be aware of something that will help ease whatever is bothering you. They can’t
help you if they don’t know you are having a problem.
I hope that something I have included in this document will help you in some way to make your
journey with breast cancer easier. Please feel free to call me at 801-732-2707 if you have any
questions. I would be happy to help in any way that I can.
Candace Tatton
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
5
I. Breast Cancer: Warning Signs
What Are the Warning Signs of Breast Cancer?
The warning signs of breast cancer include:
a. Lump or thickening in or near the breast or in the underarm that persists through
the menstrual cycle. No one ever told me to look for a gradual thickening or
hardening of the breast so I never noticed that the top half of my breast felt
different than the bottom half.
b. A mass or lump, which may feel as small as a pea.
c. A change in the size, shape or contour of the breast.
d. A blood-stained or clear fluid discharge from the nipple. I never knew that
having a clear fluid discharge was not normal.
e. A change in the feel or appearance of the skin on the breast or nipple (dimpled,
puckered, scaly or inflamed).
f. Redness of the skin on the breast or nipple.
g. An area that is distinctly different from any other area on either breast.
h. A marble-like hardened area under the skin.
These changes may be found when performing monthly breast self-exams. By performing breast
self-exams, you can become familiar with the normal monthly changes in your breasts.
Breast self-examination should be performed at the same time each month, three to five days
after your menstrual period ends. If you have stopped menstruating, perform the exam on the
same day of each month.
http://www.webmd.com/breast-cancer/guide/overview-breast-cancer?ecd=wnl_brc_030309
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
6
II. GENERAL TIPS
1. Put together a binder with all of your test results, doctors information, list of your
medications and the doses, thank you lists and blank cards, notes from appointments,
insurance information, etc. Keeping it all in once place made it easier to make sure that I
had everything I needed for each appointment.
2. GET AND KEEP A COPY OF YOUR TEST RESULTS – You will be seeing many
different doctors over the next several years. There is nothing more frustrating than
going to an appointment only to find out that the doctor’s office does not have a copy of
your test results and you have to either wait while they call around to get a copy, you
have to make important decisions without all the necessary information, or you have to
reschedule and come back on another day. There were several times that I went to an
appointment and they did not have my test results. Because I had the results with me
they were able to make a copy for their records and we were able to move forward. Also
doctors don’t always tell you everything in the test results. I would look through them
and if there was anything I didn’t understand I would ask my doctor or research what it
meant, myself.
3. Keep track of ALL of your bills and insurance information and “Explanation of
Benefit” forms. You might end up paying more because someone didn’t file a claim right
or the doctor’s office didn’t write off a charge the insurance company said they should.
You may want to have someone else follow this for you while you don’t feel good..
4. Take a digital recorder with you to each doctor’s appointment. Ask the doctors if they
mind you recording your appointments. All of my doctors have been fine with it so far.
Also take someone with you to your appointments. The stress of finding out you have
cancer and the forgetfulness caused by chemo brain can cause you to forget or not hear
everything at an appointment. It is also nice to refer back to if you and your
spouse/friend, don’t remember something the same.
5. Take a list of questions to ask the doctor with you. I can guarantee if you don’t, you will
forget what you wanted to ask him/her during the appointment. I have updated a list
from Ogden Regional Hospital that I received and added some questions of my own.
This list helped me a lot when I didn’t know what questions to ask.
6. Food – Be careful when eating fruits and vegetables. Wash thoroughly and peal off any
skins. The skins could contain pesticides.
7. BRCA1 & BRCA2 Genes – “Everyone carries two copies of the BRCA1 and BRCA2
genes, which help keep cells from growing out of control. However, a small percentage
of the population is born with mutations on one of these genes, which come with a
higher-than-normal risk of developing cancer, particularly at an early age. (Between 4
and 10 percent of all breast cancer cases are BRCA-related.)” One in eight women will
be affected by breast cancer in their life. A simple blood test can determine if you carry
either of the genetic mutations. This could help determine the possible cause of your
cancer as well as help other members of your family determine if they are at an increased
risk. It can also help to determine if you are at an increased risk of a second, non-related
breast cancer, or ovarian cancer, also linked to these two genes.
This test can be very expensive, between $3,000 to $4,000, so make sure that you get
approval from your insurance company before they actually run the test. If they approve
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
7
it, your portion should be less or if you have already met your maximum out of pocket for
your insurance, if you have one, you may not have to pay anything. If it is determined
that you have a genetic variant or mutation then your family members including mother,
sisters, daughters and even sons, because men can get breast cancer, can be tested for a
significantly smaller amount. Their test is less because you will already know what
specific mutation you carry so their test only has to be done for that specific mutation.
This will help determine if they are at an increased risk. Just because you carry the gene
does not mean that they will also. “Women and men who carry the mutation have a 50
percent chance of passing it on to their children.” One person I know had an Aunt with
breast cancer who had the mutation. The Aunt’s sister, her mother, did not carry the
gene, her uncle did, and a second uncle decided not to be tested. Having the genetic
mutation does not guarantee that you will get breast cancer but it does give carriers “a 36
to 85 percent chance of developing breast cancer in her lifetime and a 16 to 60 percent
chance of having ovarian cancer.” MAMM magazine, December/January 2009,
“Spotlight on BRCA…” pg 16-20, 32.
I had the test done and thankfully I do not have the mutation. My sisters have told me
that knowing that my cancer is not necessarily genetic helped give them some peace of
mind that they have the same risk of getting breast or ovarian cancer the rest of the
general population. Had I tested positive, and then they tested positive, they would have
had the choice of having frequent checkups to monitor their breast health, taking drugs
like Tamoxifen to reduce their risks, or to have a voluntary mastectomy rather than run
the risk of getting cancer at a later date.
If your insurance company denies coverage on the test, ask your doctor to submit a letter
stating why he feels you need the test then ask them to review the request. My insurance
originally denied my request but after they received a letter from my doctor they agreed
to cover it 100%.
8. Join or Attend a Support Group – Support groups can be a good source of information
as well as support. Ogden Regional Hospital offers a breast cancer support group on the
fourth Thursday of each month at 7:00 p.m. I joined a support group called the Young
Survivor Sisters. Their mission is simply “to love, support, and offer guidance to women
under 45 who are currently fighting breast cancer.” The information I have learned from
them has changed my life for the better. Because of them I found out that there were
other options for reconstruction than implants or a TRAM flap procedure. The women in
the group have become my good friends. They understand better than anyone what it
feels like to be young and going through this. We don’t have regularly scheduled
meetings. We just try to get together for lunch and talk to each other on the phone. Their
blog is www.youngsurvivorsisters.blogspot.com.
9. Cancer is not only emotionally and physically draining but it is VERY financially
draining. You will most likely have a copay for every doctor’s visit, prescriptions,
deductibles, etc to pay. Keep track of everything including all the miles you drive for
treatment because these can be written off your taxes. I drove almost 6,000 miles for
mine and my children’s medical appointments during 2008.
Susan G. Komen For The Cure website at http://ww5.komen.org/ has an amazing wealth
of information regarding breast cancer. They also have links to many other websites that
can help with specific items such as travel and hotels. Go to their website then click on
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
8
“I’ve Been Diagnosed With Breast Cancer” then “Understanding BC” then “Resources”
then “Insurance & Financial Issues”.
There are also many organizations that can provide financial help. Here are a few
financial as well as general breast cancer resources. The only one I have applied for so
far was The Patient Advocate Foundation. You need to call them on the first business
day of the month to get an application because they limit how many they hand out each
month. If approved they help with pharmaceutical related expenses for patients who have
the specific diseases, like breast cancer, listed on their website. Chemo is considered
pharmaceutical. They paid me back for the prescriptions that I purchased for me in 2008
and they are currently working with my Oncologist to pay for part of my chemo. They
will even go back up to 12 months, and cover some expenses if you have already been
receiving treatment.
Medical expenses/general expenses resources:
Sense of Security
www.senseofsecurity.org
Click on the "FAST" button on the left side to go to the quick questionnaire.
Sense of Security can fund the following expenses while you are receiving breast cancer
treatment: Mortgage or rent, Medical insurance premiums, Transportation costs, Child
care, Utilities, Groceries
The Patient Advocate Foundation
www.copays.org
The Patient Advocate Foundation (PAF) Co-Pay Relief Program (CPR) currently
provides direct financial support to insured patients, including Medicare Part D
beneficiaries, who meet financially and medically qualify to access pharmaceutical copayment assistance. The program offers personal service to all patients through the use of
call counselors; personally guiding patients through the enrollment process.
Needs Beyond Medicine
http://www.ucrew.org/needs.html
The Needs Beyond Medicine's goal is to offer assistance to enhance the quality of life for
those diagnosed with breast cancer. The Needs Beyond Medicine project will provide
financial assistance to women or men who are diagnosed with breast cancer, and because
of the high cost of treatment, the women/men and/or their families are faced with
temporary financial difficulties.
Cancer Care Inc
www.cancercare.org
Cancer Care is a national non-profit organization that provides free, professional
assistance to people with any type of cancer and to their families. They offer education,
one on one counseling, financial aid for non-medical expenses and referrals to
community services.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
9
Cancer Fund of America
www.cfoa.org
CFA is dedicated to providing direct aid to financially indigent patients in the form of
goods such as canned foods, medical supplies, and other staples.
Credit Counseling Centers of America (CCC America)
www.cccamerica.org
CCC America is a non-profit organization that provides a wide array of consumer and
creditor services for individuals and families experiencing financial distress.
Health insurance Association of America
www.hiaa.org
HIAA is a lobbyist group for insurance companies. They can help answer questions
regarding health insurance coverage.
Hill-Burton Free Care Program
http://www.hrsa.dhhs.gov/osp/dfcr/
This is a national government agency that provides referrals for free medical care at
participating medical facilities, mostly hospitals, and helps low-income individuals pay
their medical bills.
Cover the Uninsured
www.covertheuninsured.org
The website contains insurance and medical coverage resources...
The First Mile Foundation
www.thefirstmile.org/charities.html
Provides financial support to families and individuals in order to alleviate the added
everyday stresses associated with cancer.
Sensational in Survival
www.sensationalinsurvival.org
Committed to improving the quality of life for those battling breast cancer by providing
financial assistance in the form of grants during treatment to those in need.
RX resources:
Partnership for Prescription Assistance
www.pparx.org
Helps qualifying patients who lack prescription coverage get the medicines they need.
Website offers access to more than 475 public and private patient assistance programs.
NeedyMeds
Nonprofit organization aids people who can't afford medicine or other health care costs.
www.needymeds.com
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
10
RxHope
Web-based patient assistance program is a link between the pharmaceutical industry and
physicians to provide prescription aid.
www.rxhope.com
The Medicine Program
This national non-profit organization provides free prescriptions for those who qualify.
http://www.themedicineprogram.com
Together RX Access
www.togetherrxaccess.com
Free prescriptions savings cards for eligible US and Puerto Rico residents who have no
prescription drug coverage, are not eligible for Medicare, and meet certain income
guidelines.
SURVIVOR CAMPS
www.firstdescents.org/ In 2001, ten young adults took to the rivers of Colorado in
whitewater kayaks. For seven days, they learned the basics of the sport, eventually
conquering Class III rapids before the week’s end. They were there to prove
themselves and to prove a point: that cancer, no matter how aggressive, dormant,
advanced, or invasive, would never be stronger than they were.
Other Helps:
Young Survival Coalition
http://www.youngsurvival.org/
The Young Survival Coalition (YSC) is the premier international, nonprofit network of
breast cancer survivors and supporters dedicated to the concerns and issues that are
unique to young women and breast cancer. Through action, advocacy and awareness, the
YSC seeks to educate the medical, research, breast cancer and legislative communities
and to persuade them to address breast cancer in women 40 and under. The YSC also
serves as a point of contact for young women living with breast cancer.
National Association of Hospital Hospitality Houses, Inc
NAHHH is a service organization of hospital hospitality houses (HHH). Member houses
provide a variety of services - primarily no-cost or low-cost housing for families and
patients requiring hospital treatment or care away from their homes. At present, there are
approx. 150 HHH-type facilities in the U.S. and Canada.
http://www.nahhh.org
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
11
Joe’s House
Joe's House is a nonprofit organization providing a nation-wide online service that helps
cancer patients and their families find lodging near treatment centers.
www.joeshouse.org
National Coalition for Cancer Survivorship (NCCS)
This network of independent groups and individuals provides information and resources
about cancer support, advocacy, and quality of life issues as well as helps cancer patients
deal with insurance or job discrimination and other related legal matters.
http://www.cansearch.org
Making Memories Breast Cancer Foundation (503) 829-4486
Provides an opportunity for metastatic breast cancer patients to fulfill a dream or wish.
www.makingmemories.org
Help With Air Travel For Treatment
National Cancer Information Center – 1-800-227-2345 – will provide patients with an
ACS ID # required by some other agencies to qualify for assistance.
Mercy Medical Airlift – 1-888-675-1405
Corporate Angel Network – 1-866-328-1313 – www.corpangelnetwork.org
Continental Care Force – 281-261-6626
Air Care Alliance – 888-260-9707
Lifeline Pilots – 1-800-822-7972
--
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
12
III.
PORT-A-CATH
A port-a-cath is a devices usually inserted by a surgeon or radiologist during an outpatient
surgery, that is completely covered with skin and allowing chemotherapy medications to be
given without damaging the smaller veins in the patients arm. The “port” looks like a small ball
cut in half that is under the skin near the collarbone. My kids say it looks like a kids toy called a
popper. The center of the ball is a flexible plastic that an IV needle can be inserted into
anywhere in that plastic to administer the chemo, draw blood, or to give other fluids. When the
needle is removed it seals back up without bleeding. My doctors gave me a prescription for
Coumadin (generic Warfarin) 1 mg to help thin my blood so the port would be less likely to clog
up.
This ball has a thin
tube that comes
out of the bottom
which the surgeon
inserts into a blood
vessel near your
heart.
This is a picture
of my port after it
was taken out.
My port stuck out on top of the muscle almost as if it was
just sitting on top. Most people don’t have this problem.
Their ports can be placed deeper so that they don’t stick out
so much. Mine couldn’t for some reason so it was easily
irritated or sore from being bumped.
I could not feel the chemo drugs as they were flowing into
the port but it did hurt the first time they inserted the needle
into the port. At my first chemo treatment my nurse
recommended that I ask my oncologist for a prescription
for a Lidocaine and Prilocaine cream which when applied
before chemo it numbs the skin so that you don’t feel the
needle being inserted. She recommended that I put it on 1
hour before my appointment but two hours numbed it better
for me. Put a large glob on top of the port then cover it
with a piece of plastic wrap which I taped down or “Glad
Press and Seal” will stay on my skin by itself. Don’t
remove the plastic wrap until right before the chemo
treatment or the numbness will wear off.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
13
IV. CHEMOTHERAPY
Chemo isn't the enemy. Chemo is killing the enemy.
Chemotherapy refers to the use of anti-cancer drugs
to kill cancer cells. Chemotherapy contains
chemicals that kill all fast growing cells in the body.
Of course, cancer cells grow fast. But so do blood
cells, certain cells in your stomach and digestive
tract, hair and nail cells, etc. and those cells are
damaged or killed too. The doctor who determines
which drugs and in what dosage you will be taking
them, is known as an Oncologist.
Chemotherapy can be used for three major purposes: (www.webmd.com)
1. Adjuvant therapy: The goal is to prevent or postpone cancer from coming back after the
initial surgery and radiation. Even when the cancer seems to be confined to the breast and
lymph glands under the arm, there is a chance that cells may have already spread to other
areas that cannot be seen. Chemotherapy is given to try and kill these cells.
2. Neo-adjuvant therapy. Sometimes the cancer in the breast is so big that shrinking it first
with chemotherapy may make it easier to do surgery.
3. To treat metastatic disease. If the cancer shows up in parts of the body other than the
breast and lymph glands under the arm, it is called metastatic disease. Chemotherapy can
be one of the main ways to kill cancer cells that have spread to other parts of the body,
and help woman live longer with good quality of life. When to start chemotherapy, what
drugs to use, and what side effects to expect varies from woman to woman. Women
should discuss this with their doctors. (www.webmd.com)
There are many different chemotherapy drugs. What you receive and the time between
treatments will depend on the specifics of your cancer, what stage your cancer is, your age and
general health, as well as other things that your oncologist will take into consideration. Most
people I have talked to who had breast cancer received 8 chemotherapy treatments, 4 each of two
different drug combinations. I received 12 treatments, 4 of AC, 4 Taxotere, and 4 CMF. I had 8
treatments of chemo first, then my mastectomy, then the last 4 treatments followed by 30
radiation treatments. When I had my mastectomy there was still cancer cells in 3 of the 13
lymph nodes that they removed. Since I had already had chemo my lymph nodes should have
been cancer free. Because of this my oncologist recommended that I have 4 more chemo
treatments. This time with CMF.
1. AC
is made up of two chemotherapy drugs, Adriamycin also known as the red devil and
Cytoxan. It is called the red devil because it looks like red hair gel and it is very hard on
your body. The color causes your urine to red and then pink as it works its way out of
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
14
your body. Chemo is very hard on your liver so it is very important to drink as much as
possible to flush it out of your body. My oncologist also recommended that I flush the
toilet twice after using the bathroom to make sure that nothing is left in the toilet in case
someone else uses the bathroom after you. My AC treatments were two weeks apart.
Some of the side effects that I had were
A. Taste Buds
By my second or third treatment water didn’t tasted good anymore. It tasted
like it came from a stale pond. Some people say it has a metallic taste to it.
Try different things until you find what works for you. IT IS VERY
IMPORTANT TO DRINK AS MUCH AS POSSIBLE. The more you drink
the better you will feel and the faster the chemo drugs will be washed out of
your system. I tried many different things. What tasted good one week didn’t
the next. Orange juice was good at first but soon became too sweet. Most
soda was too sweet and most flavored waters did not have enough flavor to
them. Mountain Dew kept me going until I found G2. Mountain Dew had
enough flavor that I could stand to drink it but wasn’t so sweet that it made
my mouth sore. G2 is the new low calorie Gatorade. It doesn’t have the salty
taste that the original Gatorade has. Orange was the only flavor that I liked.
Vitamin Water also tasted okay. It doesn’t matter so much what you drink
only that you drink as much as you can even when you don’t feel like it,
which you probably won’t. If you think you might be getting dehydrated, call
your oncologist! They can give you IV fluids to help you feel better.
B. Constipation or Diarrhea
Another side effect of chemo is constipation or diarrhea. If you don’t drink
enough the constipation can be severe.
C. Hot Head
I felt like I had chemical fumes coming out of every pour of my head. I felt
sicker when my head was covered because it felt like it was holding in the
fumes so I just went around bald most of the time.
D. Chemo headache/migraine
If you are prone to headaches or migraines you need to tell your oncologist
before you start chemo. I ended up with a BAD migraine the evening of my
first chemo. I mentioned it to my oncologist before my second chemo so he
had the nurses administer the drugs slower which prevented future migraines.
E. Sinus Drainage
My sinuses felt raw and my nose ran constantly (it still does but just not as
much). Without hair in my nose to stop it, the drainage would just flow right
out. The drainage also ran down the back of my throat which made it sore and
raw from the chemicals in it. It also affected my voice.
F. Hot & cold chills, fatigue, and mouth sores (see mouth sores under Taxotere).
G. Watery Eyes
My eyes were constantly watering. I wasn’t crying, they were just always
running and the tears were very thick. Instead of running down my face like
normal tears do, they would kind of sit on my cheek before they fell down my
face.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
15
H. Nausea
It is easier to stay ahead of the nausea by preventing it than it is to get rid of it
after it has already hit. You will most likely receive some type of anti-nausea
medicine through your IV while you are receiving your chemo treatment. I
received Aloxi and Decadron. Two other drugs that helped me were EMEND
and Compazine (generic prochlorper 10 mg). EMEND is a prescription pill.
Take one pill in the morning before you go to chemo, then one pill each
morning for the next two days. Compazine is taken right before chemo and
then every 8 hours afterwards as needed. I usually needed to take it for two to
three days. Gummy bears seemed to help me a lot with helping to keep me
from becoming nauseous. They are kind of heavy and filling but were not too
sweet that they made my mouth sore but they had enough flavor that they still
tasted good.
I. Weakened Immune System
Chemo is very hard on your immune system so you have to do whatever you
can to keep from getting sick. After each chemo treatment my nurse would
give me a shot of Nulasta to boost my immune system. Nulasta has its own
side effect, bone aches. Your oncologist will probably recommend that you
take your temperature everyday. This is so that you can catch any infections
early. If your temperature is over 100° you need to call your Oncologist
immediately. I was very careful and lucky. Even when my kids got sick I
was able to stay relatively healthy during my 11 months of treatments. My
red and white blood cell counts also stayed close enough to where they should
be that I did not have to have additional hospitalizations or medications,
besides the Nulasta shot, to help my immune system. Some of the things that
helped me were…
1) I put a sign on my front door to make people stop and think before
they came in if they might expose me to something. I will include a
copy of that sign at the end of this document. Please feel free to use it
or pass it along to anyone you think it might help.
2) Whenever I went to the hospital for tests I always wore a face mask
and tried to touch as few things as possible to minimize being exposed
to germs from other sick people. Also when I had to take my kids to
their pediatrician I would request to be allowed to go directly back to
an examination room instead of waiting in the waiting room. They
were always gracious about allowing me to do that. When in the
examination room I would not touch anything.
3) I kept hand sanitizer in my purse and used it often.
4) When my kids were sick I tried to stay away from them as much as
possible. I would stay in my room whenever they were home and they
were not allowed to come in, they had to talk to me from the doorway.
5) I also had to give up helping on the PTA at my kids school. No more
field trips or going anywhere that has a lot of people who might be
sick. I didn’t give up going to church but I tried to stay away from
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
16
anyone who appeared to be sick and I kept a mask with me in case
someone sat around me who started to cough.
6) Pedicures and Manicures are an easy way to introduce an infection
into your body especially if you have them done at a salon that might
not have cleaned their equipment very well. As they are working on
the nails any kind of cut or nick opens you up to infection.
7) Take care of your teeth! Brush and floss frequently! If you need to
have your 6 month cleaning or other dental work done, let your
oncologist know first. They may want to put your on antibiotics just to
be safe, depending on where you are in your
J. Hair Loss –
My hair was gone within two weeks of starting chemotherapy.
Bald is Beautiful –
Not all kinds of chemo cause your hair to fall out. My first dose of AC caused
ALL my hair to fall out including my eyelashes, eyebrows, etc. The nice thing
about not having hair is that you don’t have to shave your underarms or legs for a
while. One bad thing about not having nose hair is when your nose runs, and it
runs all the time now, it just runs out. Keep tissues with you or close by wherever
you go. You will need them all the time!
1) Falling Out
Some women choose to shave their hair while others choose to let it fall
out on its own or brush it until it falls out. If you have long hair, it may be
easier for you to cut it into a short hair style right away. That seems to
make it easier for some women when it finally all falls out. I wouldn’t
recommend shaving it totally until it actually starts to fall out. Some
women are lucky and don’t end up having their hair fall out. When you
run your fingers through your hair and get a handful of hair, then you
know that it is only a matter of time until it is all gone.
When my hair started to fall out it hurt. That is the hair follicles dying. If
you haven’t experienced this before it is hard to understand that feeling.
My husband was out of town and I didn’t want to deal with it falling out
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
17
while he was gone. He came home 4 days after it started to fall out. By
that point it hurt so bad that I just wanted it out. I had him brush it for
about 30 minutes. During that time about 80% came out but I was too
weak to continue. The next morning I had him shave the rest. Looking
back I wish I had just had him brush the rest out because the hairs that
were shaved left stubble that poked me while the areas that came out by
brushing were smooth because the hair came out at the root.
2) Wig
If you think you might want a wig it is best to pick it out BEFORE you
start chemo. This makes it easier to match your natural hair color and
style if you want to stay the same. Once you start chemo your head will
probably be tender or sore and you won’t feel good, both of which make
shopping for a wig and trying them on, miserable. You don’t have to buy
the wig, just pick out the color, style, and size. Then if you decide you
want one you can send someone else to pick it up. Also don’t buy wig
shampoo until you need to use it because you may find that you don’t use
the wig enough to have to wash it. Your insurance may be willing to pay
for part or all of the cost of a wig as a “prosthesis.”
Natural wigs are more expensive than synthetic wigs. That is why most
women purchase synthetic wigs. You have to be careful around heat
sources like the oven while wearing synthetic wigs. The blast of heat
when you open an oven can melt the ends of a synthetic wig. Also, you
cannot use a curling iron or flat iron when styling a synthetic wig. When
you purchase a wig they should explain thoroughly how to take care of it.
I bought a wig but I never ended up wearing it. I thought I would but
when it came down to it I was more concerned with feeling comfortable
than with looking normal. Chemo made me feel like chemical fumes were
coming out of my head. When I had my head covered I felt sicker like I
was holding in the fumes. When I was at home I didn’t wear anything on
my head, I left it bare.
3) Scarf
When I went out I felt more comfortable wearing scarves or bandanas
made of material that breathed. I bought most of my scarves at Walmart
and at thrift stores like the DI and Savers.
Picture A
Picture B
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
18
Picture C
Picture D
Picture E
Square scarves can be folded over into a triangle and tied in the back. (See
picture B & D) The double layer of material can be heavier and hold in
the heat more. I also bought a piece of soft, silky material 18 inches wide
by 60 inches long (or whatever the width of the bolt is), hemmed the edges
and tied those in back. (See pictures A & C) Picture E is what the front
looks like in both styles. I liked these the best. You can use any type of
material that feels good on your head.
4) Heat Loss
Someone warned me that my head would be cold at night and that I would
need some soft fleece or cotton hats to keep warm while I slept. You can
buy these at the wig shop or you can buy a pattern at any fabric store and
make them for a fraction of the cost.
5) Fake Eyebrows/Eyelashes
Wig shops also carry fake eyebrows and eyelashes. You can also draw
eyebrows back on with an eyebrow pencil. Avon carries a “Brow Stencil
kit” with four different shapes/sizes of stencils. If you buy this before you
loose your eyebrows then you can match the stencil to your actual
eyebrows. The “Look Good, Feel Good” class (more information under
Utah Cancer Foundation) can teach you how to draw them on. Some
people chose to have them tattooed on permanently. I found that I didn’t
really care about my eyelashes or eyebrows enough to do something about
them. I did by the template kit but didn’t like the look of the eyebrows
drawn on so I chose to do nothing.
Attitude
There once was a woman who woke up one morning, looked in the mirror, and noticed
she had only three hairs on her head. 'Well,' she said, 'I think I'll braid my hair today.' So she did
and she had a wonderful day.
The next day she woke up, looked in the mirror and saw that she had only two hairs on
her head. 'H-M-M,' she said, 'I think I'll part my hair down the middle today.' So she did and she
had a grand day.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
19
The next day she woke up, looked in the mirror and noticed that she had only one hair on
her head. 'Well,' she said, 'today I'm going to wear my hair in a pony tail. 'So she did, and she
had a fun, fun day.
The next day she woke up, looked in the mirror and noticed that there wasn't a single hair
on her head. 'YAY!' she exclaimed. 'I don't have to fix my hair today!'
Attitude is everything.
Life isn't about waiting for the storm to pass...
It's about learning to dance in the rain.
My nurses told me that their patients with a positive attitude do a lot better, they survive longer.
Everyone has their down days. Just try to have more ups than downs.
2. TAXOTERE
Taxotere was my second type of chemo. Taxol is another chemotherapy that may be
used. My Taxotere treatments were three weeks apart. Along with the Aloxi and
Decadron I also received Benadryl and Zantac to help keep me from having an allergic
reaction to the Taxotere. I HIGHLY RECOMMEND closing your eyes while they give
you the Benadryl because even though it isn’t a high dose it is still going directly into
your blood stream which in turn, goes through your brain, and in my case caused the
room to fill like it was spinning. I wasn’t ready for this so my eyes were open which
caused me to get nauseous VERY QUICKLY. Taxotere had some of the same side
effects as the AC but with a few new ones.
A. Nails
Chemo can affect your fingernails and toenails.
Mine started by getting darker
near the tip.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
20
Later the bottom layer of nail that attached to
the skin of my finger separated from the rest
of the layers. This started at the tip of my
finger and gradually spread down the
fingernail. Luckily it stopped before it went
all the way down. Some people’s fingernails
or toenails may fall completely off.
B. Mouth Sores
Mouth and Tongue sores were worse with Taxotere than with AC. My tongue
felt swollen and blistered. Some people get ulcer like sores. My tongue felt
like it was swollen even the taste buds were swollen. If you notice your
mouth starting to get sore, CALL your oncologist. Don’t wait until it is so
bad you can’t stand it. My oncologist gave me a prescription for 1:1:1
NYSTAT/LIDO/MAALOX. It was a liquid that tasted like bananas that I
would swish around in my mouth. It made my mouth numb so that I could eat
or drink. It also helps the sores heal. You can also try KANKA canker
medicine for sores on your tongue.
Other women in Young Survivor Sisters swear by L-lysine supplements to
prevent mouth sores. Talk to your doctor about how much he/she
recommends that you take. They also recommend sucking on something cold
like ice or a slurpee while you are receiving chemo treatments. This is also
supposed to help prevent mouth sores.
C. Mucus Mouth
I also had what my nurse called “mucus mouth” which is a thick coating in
my mouth. The thick mucus left my mouth sore and my voice raw. My
Radiation Oncologist suggested gargling with soda pop. He said that thins the
mucus and has works for some of his patients.
D. Rash
My hands had a rash and itched for a few days, luckily that didn’t last long.
E. Neuropathy
is numbness and tingling in the hands and feet. Different people have
different amounts of neuropathy. Mine started in my left foot. One of my
nurses gave me a study article from the May 2000 issue of Oncology
Therapeutics Network that said taking “10 mg of glutamine powder three
times daily beginning the day of chemotherapy or 24 hours following for three
to five days has resulted in significant symptom reduction” of neuropathy. I
will scan the article and include it at the end of this paper. The study was for
chemo drugs like Taxotere, Taxol, and Oxaliplatin. Glutamine can be
purchased at a health food store in a pill form or a powder that you add to a
drink. I recommend the powder because it only takes 2 scoops to get the
10mg whereas you would have to take a lot of pills to get the same amount.
There are several different manufacturers Body builders use it to help their
bodies recover after a hard workout. I took it and my neuropathy went away
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
21
after a few days and it didn’t come back. On the other extreme I have a friend
who had severe neuropathy in both her hands and feet. She had to retire
because her hands were so bad she couldn’t grasp and lift the large pans at
work. She also needs a cane to help her walk. I don’t know what makes the
neuropathy worse for some people more than others.
F. Hot Flashes
The hot flashes were different from the hot head. Hot flashes felt like a wave
of heat rolling over me. They don’t last very long, anywhere from a few
seconds to a couple of minutes. Keeping a hand fan in my purse helps me
deal with them. While I was doing chemo I slept with a fan blowing on my
head and a rotating fan blowing on my body to keep me cool at night. I have
heard that Effexor XR, an antidepressant, can help reduce hot flashes. I
already take it to help with migraines so I am not sure if it has reduced my hot
flashes or not. Chemotherapy basically forced me into menopause. My last
period was the week of my 5th chemo treatment, my first treatment of
Taxotere. I do not know if it was the AC or the Taxotere that actually brought
on this side effect but I am too young to be starting menopause on my own.
Some women from the Young Survivor Sisters said that flax seed helps with
hot flashes and that vitamin E helps with the really bad ones.
3. CMF
CMF was the last type of chemo that I received. CMF is an acronym for the three-drug
"cocktail.” The names of the drugs that make up the acronym: Cyclophosphamide
(Cytoxan), Methotrexate (Amethopterin, Mexate, Folex); and Fluorouracil (5FU). It
was supposed to have the least amount of side effects. The CMF also doesn’t cause hair
loss.
A. My mouth and sinuses were what was affected the most by the CMF. My
sinuses were sore and it felt like I had smelled some bad perfume that
wouldn’t go away.
B. Achy bones can be a side effect of the Nulasta to boost your immune system.
I was lucky, I didn’t notice the ach until I started this last type of chemo.
Ibuprofen helped me with the aches. I also used a TENS machine (see
alternative therapies) to help deal with the aches.
4. Other Side Effects & Tips
A. Chemo brain
is a very real side effect. I had a foggy brain feeling, forgetfulness, trouble
spelling simple words, feeling like I was thinking in slow motion, easily loose
my train of thought or what I was doing. Non-cancer patients often tell me
that they have the same problem but chemo brain is so much more than the
gradual change of getting older. For me it was a sudden drop in my cognitive
abilities, a very noticeable change. This was one of the most frustrating
aspects of my cancer treatment. I just didn’t feel like I was myself. It has
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
22
B.
C.
D.
E.
F.
been almost one year since my first chemo treatment and I still feel the effects
of chemo brain.
Bath
Taking a hot bath seemed to help me deal with some of the side effects
probably because it relaxed me.
Weight Gain
It is a myth that everyone looses weight during chemotherapy. Most of the
people I talked to gained an average of 12 to 20 pounds. This is probably
caused by the steroids that they give you to keep you from having an allergic
reaction to the chemo drugs and due to the fact that your activity level drops
off dramatically. During chemotherapy treatments is not the time to worry
about gaining weight. In fact my nurses loved it that I was gaining weight
because it was a sign that I was doing relatively well physically. Try to eat
healthy so that you can keep your energy up as much as possible and so your
body has the fuel it needs to fight off the cancer and the side effects of the
drugs.
Girls Day Out
My way of making it easier to go to my chemotherapy treatments was to turn
it into a “girls day out.” My husband went with me to the “important”
treatments like my 1st, 8th (what we thought was the last), and 9th (starting up
again after surgery). The rest of the treatments were my girls day out. I
would have a different friend drive me each time. We would talk, laugh, and
joke around while we waited for my doctors appointment and during chemo,
then we would go out to lunch right after. I would eat a large lunch because I
knew by dinner time that I wouldn’t be feeling very good so I wouldn’t want
to eat anything. Going with a different person each time helped to pass the
time and to make each treatment unique. Friends and family members all
wanted to know what they could do to help us. Going with me to chemo was
something that they could do that really had a positive effect on me.
LAUGH
Laughter is truly the best medicine. Try not to take things so seriously.
Cancer is a serious illness but that doesn’t mean you have to look at
everything about it seriously. Laugh at everything that you can. It REALLY
HELPED me. During one of my treatments, when I had to wait longer than
usual for my appointment before chemo, Angie and I were sitting in the
waiting room laughing and joking around. After about an hour of this, an
elderly gentleman who was waiting for his sister while she had chemo, came
up to us and complimented us on our positive attitude when so many people
where so depressed and dreading chemo. He said that it was nice to see us
having fun despite what we were obviously there for. That meant a lot to me.
Laughter is truly the best medicine.
Don’t ask “Why me?”
I read an article in Woman’s Day magazine called Bounce Back From
Anything in which “Karen Salmansohn, author of The Bounce Back Book:
How to Thrive in the Face of Adversity, Setbacks, and Losses said “Nothing
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
23
G.
H.
I.
J.
K.
positive comes out of ‘Why me?’ Instead, ask yourself, ‘How can I move
forward?’ or ‘Why am I a better person for this?’ Think of yourself as a
student of life instead of a victim of it.”” It is impossible not to wonder what
caused your cancer, but since most women will never know the cause and we
can’t change it, don’t dwell on it.
Look for the Positive
There are miracles all around us we just have to open our eyes and take the
time to see them. One positive thing about being bald is that everyone seems
to know what you are going through and everyone, even total strangers want
to help you. Sometimes it is with a smile or words of encouragement, or a gift
of a pink ribbon, an angel, or other “cancer” items, and sometimes it is with a
free drink at the gas station or not letting you pay for lunch at a restaurant.
Cancer brings out goodness in others around us. Take the time to see these
things, write them down so you remember them later, and don’t forget to
thank people for caring.
Snack & Drink
Take a snack and a drink with you to your chemo treatments especially if you
will be there during your regular lunch time. My oncologist’s office had a
few snacks available for patients doing chemo. If you are hungry you might
get nauseous more easily if your treatments go longer than you expected.
Blanket
You might want to take a small lap blanket with you. The shock of having
chemo can make your body cold. The chemo room may have blankets and
pillows available if you need them. My sister made me a beautiful quilt that I
took with me to my treatments.
Many chemo drugs make you sunburn easier so be extra careful.
Get up and keep moving. I noticed that I felt a lot better when I made myself
get up and move as much as possible. I felt worse when I stayed in bed for
several days after chemo. Give your body the rest that it needs but try to keep
moving and keep life as normal as possible. If I got up and did something it
took my mind off of how I was feeling and helped the symptoms pass quicker.
TOP 10 REASONS TO DO CHEMOTHERAPY
This is my list of the positive things about going through chemotherapy.
1. Good things about loosing your hair - It saves water and time. When you don't have to
wash and condition your hair it is possible to shower in 3 minutes or less. I also don't have to
shave my underarms (I hope that NEVER grows back, it hasn’t yet where I had radiation
treatments) and rarely have to shave my legs (that can stay gone too, it didn’t, it’s back). Now I
understand why my boys like their hair very short. It saves a lot of time in the morning when
you don't have to blow dry or style your hair.
2. Good for your complexion - My face has never felt softer. It's like a chemical peel from the
inside out. I also don't have any zits.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
24
3. Good for your self esteem - People are constantly telling me how good I look which is great
considering I am bald, white as a ghost, and only wear makeup on Sundays. My eyes are still
watering so much that it isn't worth the trouble putting makeup on because it is usually gone in a
few minutes anyway. If I look so good now I will probably look gorgeous when I get my hair
back and start wearing makeup again. (My hair is back, although it is still very short, and people
still keep telling me how great I look.)
3. Lots of beauty sleep - You can sleep all you want and no one complains. I can take the kids
to school in the morning, come home and go back to bed and sleep until 11 or 12 and I don't
have to feel guilty about it. I can take a nap any day of the week, not just on Sundays. I also get
to lie in bed and watch TV or read a book whenever I feel like "resting".
4. Good for your social life - No matter where you go complete strangers often come up to you
and wish you luck, tell you they are a survivor of __ number of years, tell you their story or just
give you words of encouragement. I have made several new friends, reconnected with old
friends & family I hadn't heard from in a while, and learned how many good friends I truly do
have. I also get to spend several hours one-on-one with friends as they take me to my
chemotherapy treatments.
5. Educational - You learn more than you ever wanted to know about chemo drugs and their
side effects, drugs to deal with the side effects of chemo drugs, insurance, doctors, the latest in
medical procedures, etc.
6. Make a fashion statement - You get to wear colorful hats and scarves.
7. Saves money – (As long as you don’t include medical bills) You have no appetite so you eat
less. You would think that by eating less you would also have the benefit of loosing weight but
that hasn't been the case for me (probably the steroids). Also you don’t have to pay for shampoo,
conditioner, and haircuts.
8. Less housework - People offer to do laundry and housework for you.
9. Cook less - Friends and family want to do it for you.
10. I am finally taking the time to keep a journal (my blog, www.candytatton.blogspot.com).
I guess there is also the added benefit that it is supposed to shrink the tumor.
5. UTAH CANCER FOUNDATION
“Utah Cancer Foundation provides programs and services that support and assist cancer
patients and their caregivers. Because we understand that a cancer diagnosis can be both
financially and emotionally overwhelming, all of our programs & services are offered at
no cost. For more information, please call 801-270-2232”
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
25
Some of the free services they offer are:







Chemotherapy Class – “An informational class for patients beginning chemotherapy
treatment.”
Housekeeping Helpers – “free house cleaning services to patients receiving
chemotherapy treatment.”
Massage Therapy – “Therapeutic and stress reducing seated massage with the College
of Myotherapy.”
Look Good, Feel Better – “Learn about makeup techniques, skincare, nail care, and
options related to hair loss such as wigs, turbans, and scarves. Each participant will
receive a free kit of cosmetics for use during and after the workshop.”
Various support groups
Reiki Therapy – “Stress reduction and relaxation with Reiki, a Japanese technique
that also promotes healing with energy balancing.”
Centered City Yoga – “Quality of Life Class – A truly uplifting class for cancer
patients and survivors and their caregivers.”
Another place that offers free housekeeping is called www.cleaningforareason.org and they help
clean on scheduled days through out anyone's treatment. The application process seems a little
difficult but well worth it to get some help cleaning.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
26
V.
SURGERY
Because of the size of my tumor, my surgeon recommended that I have neo-adjuvant therapy,
chemotherapy before surgery to shrink the tumor. I ended up having 8 chemo treatments,
surgery, and then because there was still cancer in my lymph nodes, I had 4 more chemo
treatments. Because I did chemo first, I had to have a separate surgery to insert my port. If you
are having a mastectomy or lumpectomy surgery first they will probably put in the port at that
time.
A. BEFORE SURGERY
1. BUY
Buy a camisole or sports bra, shirts, and PJs that button up in the front.
After surgery it will be very hard to lift your arms over
your head or to get into anything that is tight. A normal
bra would be very uncomfortable. This is the camisole
that I bought. I was not able to use it for about a week
after surgery because it had to be pulled over my head and
was too hard to get on. One thing I liked about it is that it
had two “pouches” for the drains that attached to the
camisole with Velcro. There was a strip of soft Velcro
sewn onto the camisole that the stiffer Velcro sewn on the
pouch could attach to. Since I couldn’t get the camisole
on over my head during the first week, I ended up just
attaching the pouches to whatever I was wearing.
When I had my first reconstruction surgery my plastic
surgeon gave me a long piece of elastic with Velcro at
each end. She also gave me 4 pockets like the one
pictured below that had a loop on them that slid onto the
elastic. I would put the elastic around my waste to help
manage the drains.. This was easier to wear than the
camisole.
After surgery you will have between one to four drains. There
will be a long tube coming out of your body which has a small
ball at the end to collect the fluids that drain. The pouches are
just a 4 inch square pocket that you can put the ball inside then
pin or use Velcro to attach the pouch to your bandages,
camisole or shirt. This makes it easier to deal with the tubes
and drains.
2. Tissue Expander
If you are planning on having reconstruction done you may want to consider having a
tissue expander put in at the time of your mastectomy. The tissue expander is
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
27
“designed for use in two-stage breast reconstruction. As the tissue expander fills, the
tissues over the expander begin to stretch, similar to the gradual expansion of a
woman’s abdomen during pregnancy. The tissue expander creates a new breastshaped pocket for a breast implant.”
http://www.mentorcorp.com/breastsurgery/reconstruction/tissue-expanders.htm
Tissue expanders can also be used to stretch the skin that will be used in non-implant
reconstruction such as a tram flap or DIEP flap. It also helps women who are nervous
about waking up without a “breast.” My plastic surgeon strongly recommends this for
women with large chests to make it easier to wear a prosthesis during radiation and
while you are healing before reconstruction. A tissue expander does not interfere
with radiation treatments. The larger the size of prosthesis, the heavier it will be. If a
tissue expander is used, a smaller, lighter weight, balance form prosthesis can be
worn. A plastic surgeon can insert the tissue expander during the same surgery as the
mastectomy. This saves having to come back for an additional surgery later. You
will probably want to talk with a Plastic Surgeon before your surgery. Your General
Surgeon can give you names of people that he/she operates with at the same hospital.
3. Pain Medicine
Ask your surgeon if he/she will give you a prescription for pain medicine BEFORE
surgery so that you can pick it up ahead of time. That will save a trip to the pharmacy
on the way home from the hospital or after you have been dropped off at home. Due
to the increased abuse of pain medication your doctor may not be willing to do this so
you will need to plan on having someone available to stay with you at home while
someone else goes to pick up the prescription.
4. In-patient vs Out-patient
Insurance companies are pushing to have mastectomy surgery as an outpatient
surgery, mine was. I did not think this would be a big deal for me until I had the
surgery. I was sent home approximately 2 hours after my surgery was completed.
The drive should have taken 45 minutes but do to bad traffic it took almost 1 ½ hours,
every minute was miserable. I was still nauseous from the anesthesia and in and out
of sleep. If I had developed any problems I would have had to go the closest hospital
for help. The next morning I had to turn around and drive back for my post-operative
check-up with my surgeon. If your insurance and doctor will let you, I strongly
recommend that you stay overnight at the hospital.
5. Heart Pillow
I received this cute heart pillow after I finished radiation.
I wish they had given it to me before I started, even before
surgery. It is not only cute but functional. It is
approximately 8”x8”. It is perfect for putting inside my
shirt, under my arm to hold the arm slightly away from
my side. This would help after surgery to ease the pain of
healing incisions and during radiation to ease the tight
skin and keep the burned skin under your arm from
sticking to burned skin on your chest/side.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
28
B. AFTER SURGERY
1. Move Arm
Talk with your surgeon about how much you should be using your arms. You do not
want to be over protective in not moving them because this can lead to problems with
mobility after you have healed. Muscles that are not used tend to stiffen up or
atrophy. By moving and using your arms, within the guidelines that your surgeon
gives you, you will stretch the muscles and skin so that you can get the range of
motion back that you had before surgery. If you will be having radiation treatments
you will need to be able to lift your arms over your head. Some women need physical
therapy before radiation in order to be able to raise their arms.
2. Lymphedema
“Secondary lymphedema is a medical condition where damage occurs to the
lymphatic system. The most common injury is surgical whereby lymph nodes are
removed for the treatment for a variety of cancers. To further complicate the
situation, many of these patients undergo irradiation therapy that can worsen the
condition.
Conventional treatment for lymphedema includes manual lymphatic massage and the
use of compression bandages and garments. This approach is designed to minimize
the accumulation of lymphatic fluid within the soft tissue of the affected limb.
Uncontrolled collections of lymphedema fluid can be painful and can be a set up for
recurrent soft tissue infections. Profound, chronic lymphedema, commonly referred
to as elephantiasis, can result in open, non-healing ulcers and a woody appearance of
extremity skin, the effects of which are irreversible.”
www.drmarga.com/whatlymphedema.html
Many women develop lymphedema to varying extents after their lymph nodes are
removed during either a lumpectomy or a mastectomy. There is no way to know if or
when you will be affected by this. For some women their lymphedema sets in right
after surgery and for others it does not start until a few years later. One thing that can
help prevent lymphedema from setting in or keep it from getting worse is wearing a
compression sleeve on the arm that has had the lymph nodes removed. Wear it
whenever you are doing any exercise or heavy lifting, when driving in a car for long
periods of time, or whenever you traveling on a plane. The compression sleeve helps
keep the fluid from building up in the arm and causing it to swell or be painful. You
can purchase a compression sleeve at a post-mastectomy store. They will measure
your arm and help you determine which type of compression sleeve you will need. A
compression glove may also be necessary if you already have lymphedema.
I have been very lucky in that my lymphedema is mild. I do not have the severe
swelling that requires treatment or compression bandages or sleeves. I have noticed
that my arm doesn’t feel quite right all the time. Sometimes I have the feeling that
my arm is asleep and won’t wake up. A friend of mine calls this her “dead arm
feeling.” I also occasionally have some pain from my elbow to my wrist. I notice it
mostly when I try to lift something.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
29
For women who have lymphedema that is not helped by conventional treatment there
is a new option. “Vascularized Lymph Node Transfer (VLNTx) is a microsurgical
procedure where lymph nodes are transferred from a low-risk lymph node basin to a
limb with symptomatic lymphedema.” For more information on this new procedure
go to www.drmarga.com/whatvlntx.htm
3. MASSAGE
Many people enjoy a massage but that is something that you have to be careful of if
you had all of the lymph nodes removed under your arm along with a lumpectomy or
mastectomy. Lymph nodes help to drain the fluids out of your arms. Having a
massage on an arm without lymph nodes may cause fluid to build up and add to
lymphedema. If you want to have a massage you may want to ask the massage
therapist if they are trained in oncology massage therapy. Also having a full-body
massage the day of or the day after a chemo infusion can make you very ill. A
massage done incorrectly can actually create lymphedema, mobilize a blood clot,
compromise your immuno-suppressed state, send the chemotherapy through your
body more quickly than intended, or over-tax your already exhausted body.
4. Oncotype DX
Talk to your doctor about the pathology report from your surgery. Was an Oncotype
DX test performed? “Oncotype DX is a test that examines a breast cancer patient’s
tumor tissue at a molecular level, and gives information about her individual disease.
This information can help tailor treatment for her breast cancer. Oncotype DX is a
unique diagnostic test that looks at the genomic profile of a breast tumor to predict
the likelihood that early stage, estrogen receptor positive, lymph node –negative
breast cancer will return or recur (distant recurrence). This test also provides
information about a woman’s likelihood of benefiting from chemotherapy to
hormonal treatment.” (www.genomichealth.com)
5. My massage therapist recommended rubbing my scars to minimize the build up of
scar tissue. Rub them length wise as well as across. It is the massaging that keeps the
scar tissue from building up more that what type of lotion or cream you rub onto it.
6. If you are concerned about using an anti-perspirant under your arm that no longer has
lymph nodes you can buy an aluminum-free deodorant stick called “Tom’s Natural
Care” at Walmart or other drug store.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
30
RADIATION TREATMENT
Radiation works by basically damaging all the
cells that it comes in contact with. Normal cells
when hit with a small amount of radiation are
able to repair themselves. Cancer cells are a
mutant or abnormal mutation of the original cell
that never fully matured so it can’t repair itself
very easily. These immature cells are hopefully
destroyed when they can’t repair themselves
after receiving radiation. Radiation only affects
the cells in the area of the body that it is targeted
at whereas chemotherapy goes through the entire
body.
“External and Internal Radiation
You may be treated with external or internal radiation, depending on which method will be most
effective. External radiation is also called whole-breast radiation, and is usually given daily for 5
to 7 weeks, in a clinic that specializes in radiology for cancer.” Everyone’s radiation treatment
plan is designed specifically for them based on their body and the location of the cancer. My
external radiation treatment was 5 days a week for 6 weeks for a total of 30 treatments.
Recently I heard of a study that was done where higher doses of external radiation were given
over 3 weeks instead of 6 weeks. This treatment may be approved by the time you do your
radiation treatment. (I think this is now the standard treatment for most women.)
“Internal radiation ("brachytherapy") is also referred to as partial-breast radiation. It involves
placing small radioactive seeds into catheters inside your breast, where the tumor used to be. The
radioactive seeds emit the proper treatment dose of energy to the tumor cavity as well as the
surrounding tissue.
Balloon Catheter Radiation
The Food and Drug Administration (FDA) approved a new technology for brachytherapy called
balloon catheter radiation in 2002. For breast radiation, some methods use a balloon, and others
use a device that expands like a balloon, once it is placed inside your breast. These methods of
partial-breast radiation are gaining acceptance among oncologists, and may be an option for you.
Treatment is given for 5 to 7 days, after which the catheter is removed. Because this method of
radiation takes less time than external beam radiation, it is also called accelerated partial breast
irradiation.” http://breastcancer.about.com/od/treatments/tp/balloon_cath_radiation.htm
Another new form of treatment is called TomoTherapy®. “Conventional radiation therapy
machines deliver a wide abeam of radiation from only a few angles. The Hi-Art treatment
system uses its unique CT scanner design to deliver radiation continuously from all angles
around the patient. And, it features patented beam-modulating technology that divides a single
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
31
beam into many smaller, narrow “beamlets.” More angles and more precise modulation result in
dose distributions that conform to tumors like never before. This, in turn, minimizes damage to
surrounding healthy tissue. Through a partnership with Gamma West Cancer Services, the
TomoTherapy® treatment system is now available at Davis Hospital, making it the only cancer
treatment facility in Utah to offer this leading edge technology. To learn more about
TomoTherapy and its benefits, please visit www.davishospital.com.”
I started radiation 3 ½ weeks after my 12th chemo treatment. A week before I was scheduled to
start I went to Ogden Regional Hospital where I was going to have my treatments to have a CT
scan. They drew five dots on my body with a permanent marker in an upside down T shape,
three down my sternum and one on each side about half way down my ribs. These dots were
used to line up the machine before they did the CT scan and so they could line it up the same
way the following week. They covered the dots with waterproof Band-Aids so they wouldn’t
rub off until the next week when the dots would be replaced with permanent tattoos.
The first actual radiation treatment appointment took longer than the rest because they had to
repeatedly adjust my position, take x-rays, show the doctor the x-rays, then come back and
actually do the radiation treatment. I had treatments in 5 different areas, two in the front, one on
the side, one under my arm where the lymph nodes were removed from and one on my back
directly across from my collar bone. After I had the treatment they gave me seven dot tattoos
that would be used to line the machines up for the rest of my treatments. The whole process took
about 45 minutes. The treatment time for the remaining 29 treatments was between five and ten
minutes. I would visit with my Radiation Oncologist once a week.
I couldn’t feel anything different while they were doing the radiation treatments. I could hear the
machine making noise. The uncomfortable part about the treatments was having to hold my
hands above my head while I was laying on the table. There were two posts that I could hold
onto but the position was still awkward because it pulled on the scar tissue under my arm. Once
the skin becomes burned and started to tighten up, it was even more uncomfortable to hold my
arms up.
Every other day they would treat the tissue closer to the surface with the radiation. In order to do
this they had to fool the machine into thinking the tissue was thicker than it actually was. They
did this by placing a wet towel or piece of thick rubber on top of the area they were treating
before they administered the dose of radiation. The wet towel always got my hospital gown wet.
After a few days of this I decided to take the gown off completely while I was on the table so
that I didn’t have to walk back to the dressing room with a cold, wet gown sticking to me.
I was told that I would not start to notice any changes to my skin until approximately two weeks
after my first treatment and that the side effects would continue to worsen for approximately two
weeks after I completed my treatment. The main side effects of radiation are fatigue and burns
to the skin and underlying tissue.
A. Fatigue
There isn’t much you can do for the fatigue but to get as much rest as you can and take
care of yourself. Most of the women I have talked to say it took them at least six months
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
32
to a year after completing radiation before the fatigue had gone away. For me the fatigue
from the radiation wore me down more than it did with chemo. I’m not sure if this was
because the radiation treatments were five days of the week so my body didn’t have time
to recover from a treatment like it did with chemo or whether it was because I was worn
down from the 11 months of combined treatments. Either way I found that I needed to
rest a lot more. It has been three months since I finished radiation and I still need more
sleep than I used to and I still get tired easily. Also my skin in the treatment area is still
darker than the non-treated skin.
B. Skin and tissue burns.
I tried several different things to help with the radiation burns.
1. 99% Aloe Vera Gel – Make sure that the aloe vera gel does not have any fragrance or
alcohol in it. I bought mine at a health food store. The aloe vera worked okay for a
while until the burns started to get pretty bad. The draw back to aloe vera gel was
that when it dried it left a crusty feeling on my skin.
2. Aquaphor Healing Ointment – My radiation therapist gave me the Aquaphor to try
next. I didn’t like this because it was very greasy and didn’t absorb well. It also
made my skin stick together which hurt when I moved my arm and it pulled apart.
3. Silvadene (Silver sulfadiazine topical) – I met a woman with breast cancer who said
that she used a prescription for Silvadene from the beginning of her radiation
treatments and she never developed a burn. My Radiation Oncologist said my burns
were not bad enough yet for a prescription. A friend had some and she gave it to me
to try. I only used it a few times before I tried something else. “Silver sulfadiazine
(brand name Silvadene) is an antibacterial and antifungal agent. Silver sulfadiazine
topical is used to prevent and treat skin infections on areas of burned skin.”
http://health.yahoo.com/other-other/silver-sulfadiazine-topical/healthwise-d01259a1.html.
4. First Aid Burn Cream – This didn’t help much either.
5. By my fourth week of radiation the burns were getting pretty bad. I found myself
walking around with my hand on my hip so that I didn’t have to put my arm down.
As the burns got worse the skin seemed to shrink making it tight and sore. The
tightness eased after the skin started to crack. Around week five of my radiation
treatment my massage therapist recommended a combination of Aqua Vivos
Enzymatic Water Enhancer, Aloe Propolis Crème, and 99% aloe vera. After the
first day of using them my nurse said that she thought the swelling was going down.
After the second day she said the redness was getting better. By then I could feel the
difference. My burns continue to get better after that even though they should have
continued to worsen for three weeks after that. I wish I had had this combination
from the start. It would have prevented a lot of discomfort and pain. If you are
interested in trying these you can buy them on their websites, possibly at a health
food store, or you can buy them from my massage therapist, Judy Smith LMT, 801529-8777, and save money on shipping. (I have since used this crème for sunburns
and when I burned my hand with boiling water. It was fine the next day.)
a) Aqua Vivos Enzymatic Water Enhancer by Mother Earth Minerals Inc.
– I put a few drops on a cotton ball and rubbed it all over the burned skin.
Aqua Vivos is “a proprietary concentration of vegetable polyphenols and
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
33
lysosymes exhibiting powerful broad –spectrum antibiotic, antiviral, and
antifungal activity. Vegetable based polyphenols have demonstrated
extreme anti-oxidant, anti-inflammatory, and anti-allergenic properties.”
http://www.meminerals.com/
b) Aloe Propolis Crème by Forever Living –I used this crème mixed with
the 99% aloe vera. The two combined together made a soothing mixture
that moistened the skin without leaving a crust on top. Aloe Propolis
Crème is a “thick, rich, creamy blend of stabilized aloe vera gel and bee
propolis. To this we added chamomile and comfrey, two of nature’s best
skin care herbs, along with vitamins A and E.”
http://www.foreverliving.com
V.
HORMONE TREATMENT
There are additional treatment options available to women who’s tumor is estrogen positive. The
treatments that I know of are administered in a pill form daily for approximately 5 years. My
hormone treatment started shortly after I finished my radiation treatments. When I refer to
hormone treatments I am actually referring to hormone blocking treatments. If you are estrogen
positive or progesterone positive this means that your cancer uses these hormones to feed off of
and grow. Because of this we can never have hormone replacement therapies. The hormone
blocking pills bind up the estrogen in our bodies keeping it from being available to any cancer
cells that were not destroyed by surgery, chemotherapy, or radiation. To my knowledge there
currently are not any similar treatments available for progesterone positive tumors. Premenopausal women generally take a pill called Tamoxifen. That is what I am currently taking.
A. Tamoxifen
Tamoxifen (marketed as Nolvadex) is a pill that has been used for 25 years to treat breast
cancer. Tamoxifen decreases the chance that some early-stage breast cancers will recur and
can prevent the development of cancer in the unaffected breast. Tamoxifen also slows or stops
the growth of cancer cells present in the body.
In addition, tamoxifen may offer an alternative to watchful waiting or prophylactic (preventative)
mastectomy to women at high risk for developing breast cancer.
Tamoxifen is a type of drug called a selective estrogen-receptor modulator (SERM). At the
breast, it' functions as an anti-estrogen. Estrogen promotes the growth of breast cancer cells and
tamoxifen blocks estrogen from attaching to estrogen receptors on these cells. By doing this, it is
believed that the growth of the breast cancer cells will be halted.
B. Other Hormone Therapies: Arimidex and Femara and Aromasin
Aromatase inhibitors block the effect of an enzyme that helps the body produce the hormone
estrogen. They include Arimidex and Femara.
Another drug, Aromasin (exemestane), is similar to the aromatase inhibitors but is an aromatase
inactivator. Instead of blocking the aromatase enzyme, aromatase inactivators actually destroy it.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
34
Aromatase inhibitors delay the progression of breast cancer longer than tamoxifen in women with
advanced breast cancer whose tumors rely on estrogen to grow. Specifically, Femara and Arimidex
are used as part of the initial or follow-up treatment of hormone-sensitive breast cancer (even those
that have spread to other parts of the body) in women who have gone through menopause. They are
pills that are taken once a day.
Aromasin is currently used to treat postmenopausal women with breast cancer that has spread
outside of the breast that was not responsive to tamoxifen. It's a pill taken once a day after meals.
Zoladex
Zoladex is a drug that stops the production of estrogen. It is used in premenopausal women for the
treatment of estrogen sensitive breast cancer.
http://www.webmd.com/breast-cancer/hormone-therapy-overview
The side effects of Tamoxifen are very similar to what a women experiences when she goes
through menopause because the symptoms might be caused from the decrease or lack of estrogen
in her body as much as from the actual pill.
1. Hot flashes – mine were actually worse during chemo. (See hot flashes under
Taxotere.)
2. Night Sweats – One minute I am hot the next minute I am cold. This is very
frustrating at night. I have the hardest time with it while I am trying to get to sleep
but it does occasionally wake me up.
3. Moody – I think I am doing okay with this but I have noticed that I do get upset over
some things that may not have bothered me before.
4. Sex Drive – decreased sex drive is a side effect of low estrogen.
5. Depression – I have noticed some mild depression. I am having a harder time getting
up and moving in the morning.
6. Foggy thinking – whether this is from chemo brain or lack of estrogen this is
definitely a problem. Some days I have a really hard time focusing on what I need to
get done.
7. Insomnia – I normally have a hard time getting to sleep and sleeping through the
night. I take medication for this. I am noticing now that even with the medicine I am
having even more insomnia problems. I have never been a morning person but now
it’s worse. Some nights it takes forever to get to sleep and I wake up several times.
Other nights I end up sleeping for over twelve hours straight.
8. Other possible side effects are anxiety, irregular menstrual periods, nausea and/or
vomiting, skin rash, fluid retention and/or weight gain, thinning hair (just when it is
finally coming back in), painful joints, vaginal dryness, to name a few.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
35
VI. RECONSTRUCTION
Whether or not to do reconstruction is a very personal and individual decision. Every woman
is different in what they feel comfortable doing a mastectomy. There are no right or wrong
answers as long as you are happy with your final outcome.
A. Prosthesis
I started with a prosthesis which I purchased at Debra Lynn’s in Ogden. Debra and her
daughters are such sweet, wonderful people and they have helped me a lot. With prosthesis’
there are basically two types.
1. Contact Forms have a sticky back that sticks directly to your skin and can be worn
with either a regular or a mastectomy bra . They stick really well and stay in place
without shifting. These also come with a cover for the sticky side so that they can be
put inside the pocket of a mastectomy bra. This is what I use.
2. Non-Contact forms are worn by inserting it into the pocket of a mastectomy bra. I
have used my prosthesis like this but I don’t like it because my bra felt like it was
shifting around too much. I was too self conscious about if everything was staying
where it was supposed to be.
The prosthesis’ are very easy to care for. If you clean them daily they can last for up
to two years for the contact forms and longer for the others. The contact forms are
cleaned with a special liquid soap and warm water. Depending on what brand you
purchase some of them have special material to make them cooler when worn against
the skin. This helps to keep sweat from building up. For women who have had a
lumpectomy that left their breast misshaped, have a tissue expander, or any other
need to have a little extra added on there are “balance” forms to help balance out both
sides. This type of form can fit easily over the top of the existing tissue. There are
also special forms and swim suits available for swimming. The draw backs to
prosthesis’s are they can be hot and larger sizes can be quite heavy. Mastectomy bras
are more expensive than regular bras. Mine were about $50 each. Insurance
companies should cover the prosthesis’ and a couple of bras a year.
B. Insurance
The Women’s Health and Cancer Rights Act (WHCRA) took effect in 1998. This federal
law requires group health plans to pay for the following services after mastectomy:

Breast prostheses.

Breast reconstruction.

Surgery to the other breast to achieve a symmetrical appearance.

Treatment for complications from mastectomy or reconstruction.
Despite the law your initial request for reconstruction may be denied. If you belong to a
managed care plan, your insurer will most likely approve your request for procedures
performed in-network (with surgeons already contracted by the insurance company).
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
36
You’ll have to prove why you want to go out-of-network; you may only have sufficient
tissue for a GAP procedure, for example, which may not be performed in-network.
Your insurance company won’t pay for procedures it considers “medically unnecessary”.
Unfortunately, some companies still consider prophylactic mastectomy to be medically
unnecessary and routinely deny such requests, even for women with high hereditary risk
for developing the disease. Denials may occur when a woman decides to remove both
healthy breasts to reduce her breast cancer risk, or when a woman who is having
unilateral mastectomy to treat breast cancer wants to have the opposite healthy breast
removed also. If your request for prophylactic mastectomy and reconstruction is denied,
ask your primary care physician, oncologist, and medical geneticist to write supportive
letters explaining your high-risk status. As management of hereditary breast cancer risk
matures, more insurers understand preventative mastectomies reduce risk as well as
potential future costs of treating the disease.
http://www.facingourrisk.org/risk_management/breast_reconstruction.html
C. Surgical Reconstruction Options
When I was researching what type of reconstruction that I want to do I visited with two
different Plastic Surgeons. The first one said that I could start reconstruction 6 weeks after
finishing radiation. The second one said that she would not start reconstruction until at least
6 months after radiation. She said that your skin and tissue is still changing and healing from
radiation until then. In her opinion, reconstruction done any earlier than 6 months, just
doesn’t turn out as well as those that wait.
The first step of reconstruction for many women is having a tissue expander inserted during
the same surgery as the mastectomy. I chose not to do this because I tend to have bad
reactions to everything and I did not feel comfortable having anything foreign in my body.
(Refer to the section on “Surgery” for more information about tissue expanders.)
Listed below are most of the reconstruction options. Go to
www.drmarga.com/procedures.html for a very extensive explanation of the following
reconstruction options. The quotes in this section are all from this website.
Talk with other women in your support group to get referrals to Plastic Surgeons that they
were happy with and who to avoid. Discuss ALL the options with your plastic surgeon
before you make your final decision. Your plastic surgeon should be willing to provide you
with information on ALL the available procedures not just the ones that he/she generally
performs. Ask for a list of former patients that you can speak with so that you can get a feel
of their satisfaction with the surgeon. Most plastic surgeons should be able to perform
implant or TRAM flap procedures. Only a plastic surgeon trained in micro surgery can
perform a free flap procedure. Make sure that if you choose a free flap procedure that the
plastic surgeon has performed a lot of them. You don’t want to be the person that they are
learning on.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
37
1. Silicone-Filled Implants
One thing that I don’t think most women know is that “Silicone breast implants are NOT
life-long devices and you will likely require additional surgical procedures to the breast if
you elect to have a silicone breast implant placed in your body – the national unplanned
re-operation rate at 7 years for implants used in breast reconstruction approaches
50% for non-irradiated patients and may be higher for patients requiring
irradiation in the treatment of their cancer.” www.drmarga.com This fact alone is a
major reason why I didaqa not consider silicone-filled or any other type of implants for
me although they may be a good option for someone else. One benefit of implants is that
the recovery is easier than other procedures.
I have talked with breast cancer survivors who were happy with their implants at first but
as the remaining, “natural” breast aged or they gained/lost weight the two sides no longer
matched. They ended up feeling like they needed additional work done only a few years
after the initial surgery. Once I complete my reconstruction I don’t want to have breast
surgery ever again.
2. TRAM Flap (Transverse Rectus Abdominus Myocutaneous Flap)
“A TRAM flap is a rotational flap composed of skin, fat, muscle and the associated blood
vessels that keep it alive that is transferred from the abdomen to the chest wall in order to
reconstruct the breast. TRAM flap breast reconstruction has been associated with
weakness of the abdominal wall, abdominal wall buldging, hernias and back pain.” The
“donor” tissue from the abdomen is fed under the skin with the blood vessels still
attached, to the chest wall where it is used to form the new breast. This is the most
common, non-implant, breast reconstruction surgery performed here in Utah. Many
women are happy with this surgery. I did not feel that it was an option for me because I
did not feel comfortable using muscle that is needed for its original purpose. A side effect
of taking some muscle with the donor tissue is the possibility of a hernia at the donor site.
A plastic surgeon must be trained and experienced in microsurgery to perform the rest of
the surgeries listed below. Even if they say they can perform a DIEP flap or one of the
other surgeries, be sure to check on how many of these surgeries they have actually
performed before and what their success rate is. It also takes two plastic surgeons
operating simultaneously to perform bilateral (both breast) reconstruction.
3. Free-TRAM Flap (Free-Transverse Rectus Abdominus Myocutaneous Flap)
microsurgical breast reconstruction where skin, fat, muscle and the associated blood
vessels that keep it alive are transplanted to the chest wall from the lower abdomen.
The donor tissue is the same as in the regular TRAM Flap. The difference is that the
tissue is removed from the body before it is transplanted to the chest instead of feeding it
up under the skin.
4. TUG Myocutaneous Flap (Transverse Upper Gracillis Myocutaneous Flap)
Donor site is medial thigh that includes skin, fat, a portion of the gracillis muscle
and the blood vessels associated with it to keep it alive.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
38
The remainder of the surgeries listed below use only fat, not muscle, to reconstruct the
breast. When your own body fat is used for reconstruction the “new” breast has a more
natural appearance and will grow and shrink as your body weight increases and decreases.
Each is named after the area of the body that is the “donor” site. All of these procedures are
considered free flap reconstruction.
These forms of reconstruction require limited activity for six weeks following the surgery to prevent
the separation of the grafted blood vessels. One of the limitations is that you cannot lift
ANYTHING over 5 pounds during the six week period of time. The success of the transplanted
tissue and the length of your recovery time will greatly depend on how strictly you follow the
limited activities.
Some women do not choose a free flap procedure due to the longer, more difficult recovery than for
implants and that they require more than one operation. The definite advantage is the natural look
and feel of the transplanted tissue and that generally no future surgeries will be required once the
reconstruction has been completed.
5. DIEP Flap (Deep Inferior Epigastric Perforator Flap)
Donor site is from the abdomen. “DIEP total flap failure can be seen in less than 1% of
cases.”
6. SIEA Flap (Superficial Inferior Epigastric Artery Flap)
Donor site is from the abdomen. “SIEA total flap failure can be seen in less than 2% of
cases.”
7. S-GAP Flap (Superior Gluteal Artery Perforator Flap)
Donor site is from the upper buttock. “S-GAP total flap failure can be seen in less than
2% of cases.” This is what I had done. I think the recovery from a S-Gap surgery is
easier than the I-Gap because you are not sitting on the incision.
8. I-GAP Flap (Inferior Gluteal Artery Perforator Flap) or “In-the-Crease" GAP Flap
Donor site is from the lower buttock. “I-GAP total flap failure can be seen in less than
2% of cases.”
9. TUG Perforator Flap (Transverse Upper Gracillis PERFORATOR flap)
Donor site is a medial thigh perforator flap based on blood vessels that supply the
gracillis muscle. As a perforator flap, it is a flap made of skin and fat only (no muscle).
There are a few other procedures available but the ones listed above are the most common. A detailed
description of these and all the other procedures is available at
http://www.drmarga.com/procedures.html.
D. Steps of Breast Reconstruction With Natural Tissue
Breast reconstruction after a mastectomy isn’t a one step process. Your steps may vary depending
on which procedure you choose and other variables during surgery.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
39
1. The first step of the reconstruction process is deciding on a Plastic Surgeon and what procedure
you want to do. If possible, meet with the plastic surgeon before your mastectomy so that he/she
can put in a tissue expander during that operation or the general surgeon can do a skin sparing
mastectomy so there is skin available for reconstruction later. A tissue expander may be optional
if tissue from the donor site can be used during the reconstruction.
2. Actual Procedure – This is when the tissue is moved from the donor site to the chest area.
Depending on the type of reconstruction you choose the actual procedure time may vary between
4 to 12 hours and is done on an in-patient basis. My surgery lasted 11 hours which included a
prophylactic mastectomy on the non-cancerous side and I was in the hospital five days. For free
gap reconstruction this is considered Stage 1.
3. Aesthetic Shaping – “Involves the aesthetic shaping of the breast reconstruction flap and the
completion of any counterbalancing procedures of the remaining breast (breast reduction, breast
lift or breast augmentation). Excess skin from the flap previously placed for perioperative
monitoring will be removed. Revisions to the donor site include liposuction and scar revisions.
Nipple reconstruction is completed at this stage.” http://www.drmarga.com/procedures.html
This is Stage 2.
4. Areola Reconstruction – This step is done in the office using a local anesthesia. The areola is
reconstructed using a tattoo technique. This is Stage 3.
One drawback to a mastectomy and breast reconstruction is that there is no feeling or sensation in the
breast that has been worked on. If you only need work done on one breast, you will still have normal
sensations in the remaining breast. Some women I have talked to chose to have a voluntary
(prophylactic) mastectomy on the unaffected breast and bilateral reconstruction, both breasts. They did
this to prevent getting cancer in the opposite side and for their own peace of mind. These women
mentioned that they miss the feeling and sensations in the breast but that they do not regret having the
bilateral reconstruction done. I chose to have my right, non-cancerous breast removed during my first
surgery for S-Gap reconstruction. I was surprised to find that I still have some feeling in the skin of that
breast. This may not be normal.
E. My Reconstruction Experience
I started my reconstruction process while I was still going through chemo, before I had my
mastectomy. I met with two different plastic surgeons to help me decide what I wanted to do
and when. I decided not to have a tissue expander put in during my mastectomy because I was
worried about the discomfort and my body possibly rejecting the tissue expander. One of my
friends said that her tissue expander was very uncomfortable and felt hard as a rock. She said
that if she bumped into anything the tissue expander didn’t have any give. Another friend’s body
actually rejected the tissue expanders (this is rare). She had to have them removed. The plastic
surgeon I decided to go with, Dr. Marga Massey, said that removing the tissue expander would
actually be more work for her than it would be to use skin from the donor site for my
reconstruction. That helped me decide that a tissue expander wasn’t worth the discomfort. I am
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
40
very glad that I didn’t have one because my reconstruction ended up being 12 months after my
original mastectomy.
After my first eight chemo treatments, in July 2008, I had my mastectomy on my left breast.
Because there was still cancer in my lymph nodes, six weeks after surgery I started four more
chemo treatments which I finished in October 2008. In November I started 30 radiation
treatments, finishing on December 10, 2008. After finishing radiation I needed to wait at least
six months before my actual reconstruction process started. At this point I was still positive that
I wanted Dr. Marga Massey to do my reconstruction. At that time Dr. Massey operated in Salt
Lake City, Utah, Chicago, Illinois, and Charleston, South Carolina, as well as France and Egypt.
Because I had decided to have a prophylactic mastectomy on my right side I needed two
surgeons trained in micro-surgery, operating at the same time in order to have bilateral (both
sides) reconstruction. Unfortunately, Dr. Massey could not perform Stage 1 bilateral
reconstruction in Salt Lake because the hospital she operates at, Alta View Hospital, does not
have the necessary surgical microscope and they don’t accept my insurance. Also a second
surgeon trained in micro-surgery is not available in Utah. Because of this I was scheduled to go
to Charleston, South Carolina for my Stage 1 reconstruction. In June 2009, Dr. Massey called
me to tell me that she was moving her primary practice to New Orleans, Louisiana, where a new
private hospital dedicated to breast reconstruction was located.
So on Monday, July 20, 2009, I had my first reconstruction surgery at the St. Charles Surgical
Center in New Orleans, Louisiana. First a general surgeon removed my right breast. Next, they
turned me onto my stomach to remove the donor tissue from my upper buttocks. Finally, they
turned me over again onto my back to transplant the donor tissue. The entire operation took
approximately 11 1/2 hours. I remained at the hospital until Friday. My post operative check-up
was the following Monday and we flew home on Tuesday. Because we were there for two
weekend, we were there a total of 12 days. The same week I was in New Orleans, Dr. Massey
performed the first lymph node transplant in Louisiana.
Originally I was scheduled to have an I-Gap using the fat from my lower buttocks. That is the
procedure that a few of my friends had already had. When I had my pre-operative appointment
with Dr. Massey she used a special machine to listen to the blood flow around the donor tissue.
That was when we decided that the blood flow was better up higher in the S-Gap area. Looking
back I am glad that we went with the S-Gap rather than the I-Gap because the recovery was so
much easier. The incision for an S-Gap is located higher than for an I-Gap. As it is healing I
could use a pillow to keep from leaning on the incision. With an I-Gap you have pressure on the
donor incision while you are sitting and lying down. Because of the delicate donor tissue you
cannot lay on your stomach or side for 6-8 weeks following surgery. I’m not going to sugar coat
it, the recovery from a free flap surgery is not easy but then again nothing involved with breast
cancer is easy, but the final results are worth it. I don’t regret for a minute having had this type
of reconstruction.
I went to New Orleans for my stage 2 operation because Alta View hospital would not take my
insurance. I was there a total of 5 days. This surgery took 6 ½ hours. My breasts were adjusted
slightly to be more uniform. I had a little liposuction to my donor site and a tummy tuck to give
me a more overall balanced appearance With the tummy tuck I received a new belly button
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
41
because my belly button was removed along with the extra skin from my abdomen. Nipples
were constructed out of my own skin on both breasts. They were very “perky” at first.
Gradually over a few months they calmed down. The nipple on the side that had cancer has
shrunk more than I would like, probably due to the lower blood flow due to radiation treatments.
I have not had the tattooing of the areolas because it is now a new insurance year and I have not
met my deductible yet. I don’t want the tattoos enough to pay for them out of pocket.
Although my breasts are not “perfect” I am very happy with the results that I have. Dr. Massey
has offered to redo the left nipple and make some more adjustments to the donor site but I am
tired of having surgeries and I am not sure I want to have another surgery to make some minor
adjustments when I am happy with where I am at now.
F. Travel Recommendations
Traveling for reconstruction can get very expensive. Not only the surgery (which insurance is
required to cover if they covered your mastectomy), but a hotel room, rental car, airfare, and
food while you are gone. There are several things that you can do to lessen these expenses.
The first thing you need to do is call the National Cancer Information Center – 1-8002345 – will provide patients with an ACS ID # required by some other agencies to qualify
for assistance.
1. Airfare – There are several non-profit organizations that can help if you need to travel for
medical treatment for your cancer.
a) Mercy Medical Airlift – 1-888-675-1405 – They will donate round trip
tickets for you and a companion for one flight a year. People donate their
frequent flier miles which are used to purchase the tickets with a major
airline like United and Continental. An ACS ID # is required. They will
not actually book the flights until 2-4 weeks prior to the departure date but
you need to call and get registered as soon as possible. The flight is free
but you will still need to pay the taxes and a small fee, between $100-$200
dollars total.
b) Corporate Angel Network – 1-866-328-1313 –
www.corpangelnetwork.org – They will arrange for you to fly on a
corporate jet if they have a sponsoring corporation that flies to your
destination.
c) Continental Care Force – 281-261-6626
d) Air Care Alliance – 888-260-9707
e) Lifeline Pilots – 1-800-822-7972
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
42
f) Airfare can be quite expensive so if you can schedule your surgery then wait for a
sale to actually book a flight you can save a lot of money. Right now most
airlines charge around $30 per bag, each way, for checked baggage. This can add
a lot to your trip if you can’t pack light. You can take one carry on and one
personal item like a purse or computer bag. South West airlines currently does
not charge for the first two checked bags.
2. Hotel –
a) Hope Lodge – The American Cancer Society has several Hope Lodges around the
country where cancer patients can stay for free while they are receiving treatment.
The number of rooms varies depending on the location. Check out their website
for locations and for an application. The application needs to be submitted by
your doctor’s office. The Hope Lodge in New Orleans has 36 rooms, a kitchen
where you can cook your own meals, laundry facilities, internet access, and a
community room with tvs. Other Hope Lodges should be similar.
b) National Association of Hospital Hospitality Houses, Inc
NAHHH is a service organization of hospital hospitality houses (HHH).
Member houses provide a variety of services - primarily no-cost or lowcost housing for families and patients requiring hospital treatment or care
away from their homes. At present, there are approx. 150 HHH-type
facilities in the U.S. and Canada.
http://www.nahhh.org
c) Joe’s House - Joe's House is a nonprofit organization providing a nationwide online service that helps cancer patients and their families find
lodging near treatment centers. www.joeshouse.org
d) Your doctor’s office may also be able to recommend hotels in the area
who offer discounts to patients during treatment.
3. Food – If you stay at the Hope Lodge you can cook your food there. You may also want
to purchase a discount coupon book online if you are going to be in the area for several
days.
4. Rental Car –
a) If you are having surgery with Dr. Massey in New Orleans, the hospital offers a
free car service that will pick up/drop you off at the airport and take you to your
appointments. This can save several hundred dollars if you are going to be there
for a week or two (stage 1).
b) www.priceline.com and www.hotline.com are good websites to get discounts on
rental cars. Priceline lets you make an offer on what you want to pay and then
they let you know if one of five major car rental agencies is willing to accept that
offer. If they won’t accept it then you can try again the next day so try early and
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
43
start offering low then increase your bid until your bid is accepted. Hotline shows
you prices but does not tell you with what car agency it is. These sites are also
good for hotels. We used Priceline for our trip to Florida and got a minivan for
$20 per day. We used Hoteline for our condo. It was $50 per day just outside of
downtown Disney.
5. Caution – Be careful when you are traveling so you do not become a victim of crime.
NEVER leave your bags even a few feet away from you. I left my bag 5 feet from us at
the rental car check in desk and in the lobby while we were getting a tour of the Hope
Lodge. My expensive sunglasses were stolen out of my bag sometime during the few
minutes I wasn’t watching them.
G. Traveling After Surgery - There are several things that you can do to make traveling after
surgery easier.
a. When you book your flight check into special arrangements that they have for people
flying who need assistance. If the airline has reserved seating they may upgrade you to
the seats closer towards the front of the plane for free. These seats may have more leg
room. They may also let you board before the standard boarding. When we came home
on our first trip the early-boarding allowed us to be able to put our carry on bags in the
front of the plane near our reserved seats. If we had had to wait to board until our
assigned time we would have had to take our carry on bags towards the back of the plane.
When we needed to transfer planes we would have had to wait until the plane emptied to
get to our bags. This extra time would have made us miss our connecting flight home.
For airlines like SouthWest that does not have reserved seats they have pre-boarding for
people needing assistance and families with young children. Once again this gets you
seats in the front of the plane so you don’t have to wait in line while everyone else is
boarding ahead of you.
b. Request a wheelchair for your return trip. You may think that you will be okay to walk
but even in small airports you have to walk a lot. When I was coming home from my two
trips to New Orleans, both times the person from the airlines that was pushing my
wheelchair took us both to the front of the line at the security checkpoint. This saved us a
lot of time and standing in line when you have just had surgery is VERY hard. Make
sure that you take some cash with you to tip this attendant.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
44
VII. NON-TRADITIONAL THERAPIES
I tried several alternative therapies along with my conventional treatments. Talk with your doctors
before trying any alternative therapies.
A. Nutritional Supplements
1. Max GXL glutathione supplement
According to their website “glutathione is the most powerful, prevalent antioxidant in
your body? Increasing your glutathione level will naturally increase your energy,
detoxify your body and strengthen your immune system.” Refer to www.maxgxl.com
for more information or to purchase. When I first found out that I had cancer my
uncle gave me the Max GXL glutathione supplements to take. A healthy person takes
one packet a day (three pills), I took three packets a day. I feel like that is one of the
reasons why my immune system was never compromised and why I did so well while
going through all of my treatments.
2. Immu-Cell
According to their website Immu-Cell is “an all natural specific aid for the immune
system. Based on a special blend of Chinese herbs, this cell developed specific
formula also contains micro-nutrients essential for proper immune function. Support
Indications: Severe immune issues, cancer or radiation therapy, abnormal cell
activity.” www.ProfessionalBotanicals.com or purchase from Dr. Allan Millet at
Natural Health & Spine 801-621-0270
3. Cell Detox
According to their website Cell Detox is a “strong cell detoxifier used for extreme
toxicity and unusual cell and tissue growth or activity. Support Indications: Blood
detoxification, or extreme toxicity.” www.ProfessionalBotanicals.com or purchase
from Dr. Allan Millet at Natural Health & Spine 801-621-0270.
I took both Immu-Cell and Cell Detox during chemotherapy and radiation. I feel like they
helped me.
B. Alternative Therapies
1. Reflexology
A good friend of mine did reflexology on my feet each night after I had
chemotherapy.
2. Foot Detox or IonCleanse®
I started doing foot detoxing a week after my second chemotherapy treatment. At
that point I had been throwing up each night for a week. In desperation I called my
chiropractor and asked him if it was safe to try a IonCleanse® foot bath to see if it
made me feel better. I went to his office and did a 15 minute foot detox. That night
was the first night in 7 days that I did not throw up. That was a Thursday. On Friday
I felt well enough to get up and do some things around my house. On Saturday I
went to my parent’s house to help them pack up to leave on their mission. My Mom
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
45
kept telling me to take breaks but I didn’t feel tired, I felt fine. After that I continued
to do a foot detox on the following Monday and Wednesday after my Thursday
chemo treatments.
How The IonCleanse® Works
“An ion is a charged atom that has gained or lost an electron which creates a magnetic
field capable of attaching to and neutralizing oppositely charged particles. These
neutralized particles are extracted from the body through the process called osmosis.
Osmosis is a scientific term that is used to describe the movement of particles through
a membrane from an area of lower concentration to an area of higher concentration.
In this case, the higher concentration refers to the ion field that is set up by placing
the array into the water while running the unit.”
“The array is placed into the water alongside the hands, feet, or body while the power
supply delivers a low level direct current to the array. This causes the metals within
the array in combination with water and salt to generate positively and negatively
charged ions by separating oxygen and hydrogen in the water. We speculate that ions
generated by the IonCleanse® travel through the body attaching themselves to a
multitude of toxic substances, thereby neutralizing their positive or negative charges.”
http://ioncleansedetoxfootbath.com/ The toxins are then drawn out of the body
through the pores of the feet.
IonCleanse® is just one form of foot detox. That is the brand that my chiropractor
uses. I have since purchased a version called CellSpa FOOT BATH ION SPA MP3
IONIC DETOX MACHINE. I purchased mine on Amazon.com but it is also
available on EBay. Call me if you would like to try my machine before you buy one.
You will need to get your Oncologist’s approval before trying a foot detox.
Before
After
3. TENS Machine (Transcutaneous Electronic Nerve Stimulation)
One of my physicians prescribed the use of the TENS machine for leg pain I was
experiencing during chemotherapy. The bone pain was most likely caused by the
Nulasta shot I was receiving to boost my immune system. It gave me temporary
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
46
relief from the pain so that I was able to rest at night. A TENS machine is a small
electronic device that is prescribed by a physician “for the symptomatic relief and
management of chronic (long-term) intractable pain and as an adjunctive treatment in
the management of post surgical and post traumatic acute pain problems.”
“How Does TENS Work? TENS or Transcutaneous Electronic Nerve Stimulation,
refers to the transmission of small electrical pulses through the skin to the underlying
peripheral nerves. The theory of TENS suggests two different modes or operation.
1) Conventional (high frequency) TENS, is based on the theory that
continuous mild electrical activity may block the pain signal traveling to
the brain. If the pain signal does not get through to the brain, the pain is
not “felt.”
2) The second way that TENS is thought to work is by stimulating the body’s
own natural pain-control mechanism. “Low frequency” or short bursts of
electrical activity may cause the body to release its own pain relieving
substances, called endorphins.” Instruction manual for TENS-2500.
4. Acupuncture
Although I did not try it myself, I have heard that acupuncture can help relieve some
of the side effects of chemotherapy.
5. Prayer
I am a firm believer in the power of faith, prayers, and priesthood blessings.
There is no medical proof that any of these things work but I feel like they helped me. Be sure to
check with your Oncologist before trying any of these non-traditional therapies.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
47
VII. WHAT NOW?
Now that you have finished your chemotherapy, surgery, and radiation treatments, now that the
adrenaline rush that comes with fighting for your life is gone, what do you do now? Getting
your life back to “normal” can be hard to do after finishing treatment. You aren’t going to
suddenly feel good again. It is going to take time for your body to recover. What was normal
before just doesn’t apply to us anymore. If you are doing hormone treatments like I am, you may
still have some things to deal with on a daily basis. So, how do you get back to normal? I am
still trying to figure that out. I am trying to help myself by helping ease the journey for others. I
am trying to loose myself in service.
Many women, myself included, worry about how we will know if the cancer has come back. If
breast cancer comes back the most common place that it returns is in the bones, liver, and lungs.
If you notice a change in your health in any of these areas be sure to report it to your Oncologist
ASAP. It is probably nothing but it could be a sign that your cancer has returned.
A. Mammogram
Continue with your annual mammograms. Your doctor may recommend more frequent
mammograms.
B. Check-Ups
Go to your regular check ups with your Oncologist. You will probably have an
appointment every 2-3 months at first, then every 6 months after that. Your Oncologist
will most likely want you to have blood tests done a few days prior to these
appointments.
C. PET scans
Discuss with your Oncologist as to whether he/she thinks that you might benefit from a
PET scan after treatment. You most likely had a PET scan after your initial diagnosis.
“PET can help physicians effectively pinpoint the source of cancer. This is possible
because many cancer cells are highly metabolic and therefore synthesize the radioactive
glucose (sugar) that is injected in the patient prior to the exam. The areas of high glucose
uptake are dramatically displayed in the scan imagery, as opposed to the anatomical
imagery of CT or MRI, which cannot detect active, viable tumors.”
http://www.petscaninfo.com/zportal/portals/pat/cancer/breast/followup
D. Tumor Markers
Tumor markers are substances that show up in your blood, urine, or tumor. These are
hormones, proteins, or parts of proteins that are made by the tumor or by your body, in
response to the tumor, or particular benign conditions. Some tumor markers are specific
to one type of cancer, and some are for general oncology use.
Use of Tumor Marker Tests: Oncologists use tumor marker tests to detect, diagnose,
and monitor cancer. These test results are used together with other data, such as biopsy
results, to get a clear picture of the stage of your cancer, what type of treatment will be
most effective, and to measure your progress during treatment. You may have a tumor
marker test before starting treatment, to get a baseline level. This score will be used to
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
48
compare with later tumor marker tests. Ask for a copy of your tumor marker tests, and
keep these with your health records.
Uses for Tumor Marker Test Results: Your test levels will show how well your
treatment is working. If your tumor marker levels decrease, that is a good sign that the
cancer is responding to the therapy. An increased level indicates that the cancer is
resisting the treatment, and a change may be required. After you have finished treatment,
another tumor marker test may be done to check for any return of the cancer. During your
follow-up visits after initial treatment, tumor marker tests may be done to monitor for
recurrence.
Tumor Marker Tests Do Not Screen for Breast Cancer: Mammograms, ultrasound,
and breast MRIs are imaging tools that can screen for breast cancer. These tests are
highly sensitive and specific enough to detect breast cancer before there are symptoms. A
tumor marker test alone does not provide enough information to screen for breast cancer.
Help! My Tumor Marker Levels Went Up!: Rising levels on your test results can be,
but are not always worrisome. Although changes in tumor marker levels may give you
cause for alarm, other non-cancerous diseases can cause test results to vary. Conditions in
the lab that processes your test may also throw off the results. Always talk to your
oncologist about your test results and keep asking questions until you understand how
these results will impact your prognosis and treatment plan.
Breast Cancer Tumor Marker Tests:
 Urokinase Plasminogen Activator (uPA)
 Plasminogen Activator Inhibitor (PAI-1)
These are measured with one test, called the uPA + PAI-1 Tumor Marker Test.
You Won't Need Every Tumor Marker Test:
These tumor marker tests are useful for only a small fraction of patients. Your doctor will
recommend these only if you need them.
 Cancer Antigen 15-3 (CA 15-3)
 Cancer Antigen 27.29 (CA 27.29) (This is the test I had done on March 2nd)
 Ki-67 Labeling Index
 Carcinoembryonic Antigen (CEA)
Other Diagnostic and Prognostic Tests:
These are not tumor marker tests, but are important in making decisions about treatment.

Estrogen (ER) and Progesterone Receptors (PR)

Human Epidural Growth Factor 2 (HER2/neu)
http://breastcancer.about.com/od/diagnosis/p/tumor_mkr_ov.htm
According to my Oncologist, the tests for tumor markers for breast cancer are not as effective as
tumor marker tests for other cancers. He also said that studies have shown that for breast cancer
patients, symptoms are more effective at signaling a recurrence than any diagnostic test currently
available.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
49
ARTICLE ABOUT GLUTAMINE
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
50
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
51
DOOR SIGN
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
52
Hormone Therapy for Breast Cancer
About two-thirds of women with breast cancer have tumors that contain estrogen
receptors (called ER-positive). This type of cancer depends on the female hormone to
grow. Hormone therapy is given to block the body's naturally occurring estrogen and
fight the cancer's growth. Women who are ER-positive are more likely to respond to
hormone treatment than women who are ER-negative.
Tamoxifen for Breast Cancer
Tamoxifen is a pill taken daily and has been used consistently for the past decade to
treat breast cancer. Tamoxifen can be used in women of any age, regardless of whether
they've gone through menopause. Long-term (five-year) use of this anti-estrogen drug
has been found to reduce the chance of breast cancer recurrence and new breast
cancers in women with ER-positive or ER-unknown breast tumors. Doctors also use
tamoxifen to treat metastatic breast cancer. There is no advantage in taking tamoxifen
for more than five years.
Women taking tamoxifen are more likely to develop cancer of the uterus (endometrial
cancer) than other women. Therefore, they should have regular pelvic exams and tell
their doctor about any abnormal uterine bleeding. Other risks include deep-vein
thrombosis, blood clots in the lungs, and benign ovarian cysts. Minor side effects
include hot flashes, mood swings, and cataracts.
Aromatase Blockers and Breast Cancer
Aromatase blockers are pills that appear to be more effective in treating breast cancer
than tamoxifen, according to new studies. But they are effective only in women who are
past menopause. Aromatase blockers - used in both early and advanced breast cancer
- prevent estrogen from being produced in the first place. They inhibit or inactivate the
aromatase enzyme, which is involved in the production of estrogen.
Arimidex (anastrozole) and Femara (letrozole) are aromatase blockers used to treat
estrogen receptor positive breast cancer in postmenopausal women, either following
tamoxifen treatment or as first line therapy. A 2008 study showed that women taking
Femara reduced their risk of their cancer returning by 63%. That's several years after
completing the recommended five years on tamoxifen.
Positive results have also been demonstrated with Arimidex. One study found that
switching to Arimidex after 2 to 3 years of tamoxifen was linked to better survival without
disease recurrence at the 5-year mark compared with staying on tamoxifen for 5 years.
A third pill, Aromasin (exemestane), is used for women with early breast cancer after 2
to 3 years of tamoxifen treatment. In clinical research, compared to women that
continued tamoxifen for 5 years, women who switched to Aromasin after 2 to 3 years of
tamoxifen had a 31% lower risk of breast cancer recurrence and a 14% decrease in
mortality.
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
53
Aromasin is also used for women with advanced breast cancer when tamoxifen stops
working. It is only used in women after menopause.
Side Effects of Aromatase Blockers
Side effects of the aromatase blockers Armidex and Femara are rare. A serious side
effect is the possible development of osteoporosis. Bone density tests are used to
monitor for this condition.
If you have any of these side effects, contact your doctor right away:

Nausea; vomiting; muscle or bone pain; fatigue; headache;
dizziness; muscle weakness; swelling of the hands, feet, or
lower legs; loss of appetite; constipation; diarrhea;
abdominal pain; hot flashes; and cough.
Side effects of Aromasin include:

Hot flashes, upset stomach, sweating, and feeling tired or
hungry.
Ovarian Ablation for Breast Cancer
Studies have shown that some women with breast cancer may benefit from ovarian
ablation, if they have not yet gone through menopause and their cancer is estrogenreceptor positive (ER positive.) Ovarian ablation is a procedure that stops the ovaries
from producing the estrogen that helps the cancer cells grow. This can be done by:

Using radiation therapy aimed at the ovaries

Surgically removing the ovaries

Giving the woman LHRH (luteinizing hormone-releasing
hormone agonists), which goes by the name goserelin
(brand name Zoladex). This stops the functioning of the
ovaries temporarily. Early studies have shown that giving
women goserelin alone or with tamoxifen has been at least
as effective as the chemotherapy combination used in
hormone-sensitive, early breast cancer.
Ovarian ablation can also be done in combination with tamoxifen therapy.
Before treatment begins, before you begin treatment, print out Questions to Ask before
your first appointment.
Recognizing a Breast Cancer Emergency
Call your nurse or doctor about your breast cancer if you have:
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
54

A temperature greater than 100 F. If you experience any
fever and chills, notify your doctor immediately. If you are
unable to contact your doctor, go to the emergency room.

If you notice in your mouth new sores, patches, swollen
tongue, or bleeding gums

If you experience a dry, burning, scratchy, or "swollen" throat

A cough that is new or persistent and produces mucus

Changes in bladder function, including increased frequency
or urgency to go; burning during urination; or blood in your
urine

Changes in gastrointestinal function, including heart burn;
nausea, vomiting, constipation, or diarrhea that lasts longer
than two or three days; or blood in stools
At no time should the content in this document be construed as medical advice or recommended treatment.
Only your personal medical practitioner can appropriately make recommendations about your care.
55