Download Welcome to the Stormont

PAT I E N T
HANDBOOK
Welcome to the
Stormont-Vail Cancer Center
stormontvail.org
Table of Contents
Welcome to the Cancer Center
First Appointment: What to Expect
First Treatment: What to Expect
Directions to the Cancer Center
Topeka Campus Map
Contacting the Cancer Center
Vision/Mission/Values
About the Cancer Center
Accreditations and Honors
Providers
Adult Medical Oncologists
Pediatric Medical Oncologists/
Hematologists
Radiation Oncologists
Services at the Cancer Center
Chaplaincy Services
Clinical Research Trials
Dietitian
Educational Programs
Genetic Screening
Linear Accelerator
Mastectomy Aftercare
Meet and Greet with a Pet
Oncology Nurse Navigator
Palliative Care Program
The PET/CT
Pharmacist
Piano Music
Social Work/Counseling Support
Support Groups
Tai Chi
2
3
3
4
4
5
6
7
8
9
9-10
11
12
13
13
13
13
13
14
14
14
14
14
15
15
15
15
16
16
16
Community Resources
Chemotherapy
Radiation Therapy
Palliative Care
17
18-19
20
21-23
When the Treatment is Over 24-25
Follow-Up Care
26
Caregivers’ Support
27
Exercise
28
Glossary
29-31
Online Resources
32
1
Welcome
Welcome to the Stormont-Vail Cancer Center. We appreciate you choosing us
for your health care. Our staff is committed to providing you with the very
best care available. We want to make every experience you have with us as
comfortable and pleasant as possible.
This guide was created as a resource for you in your journey with a diagnosis
of cancer. If you have any questions, feel free to call us at (785) 354-5300.
To assist you through this journey, an oncology nurse navigator has been
assigned to you. An oncology nurse navigator is an oncology-trained RN
who helps patients, families and caregivers “navigate” the many systems
encountered with a diagnosis of cancer. Your patient navigator will help link
you to needed programs and resources. This may include information about
what to expect during treatment, side effects you may experience, support
groups, resources for financial assistance, insurance questions, transportation
issues, social or emotional needs, and other concerns.
Please be assured we are here to help and support you along the way – starting
with what you need to know about preparing for your first appointment.
2
First Appointment: What to Bring and Expect
Thank you for entrusting the Stormont-Vail Cancer Center staff with your
care. We look forward to meeting you and caring for you.
Please arrive 30 minutes before your appointment to get registered and to
complete any lab.
When you arrive at the cancer center, please park in the parking lot at the
front, or south side of the building. There is a convenient drop-off area at the
front door. Once you are inside, please come to the registration desk and we’ll
get you checked in.
Please bring the following items to your appointment:
• Personal identification (current driver’s license, state ID or envelope showing
your present/permanent address)
• Medical insurance cards and prescription drug card
• List of current medications
• Insurance referral from your primary care physicians (if your insurance
company requires one.) This may also be faxed from your physician’s office to
(785) 270-4952.
If you need to reschedule your appointment or have any questions, please
contact your patient navigator at (785) 354-5300.
First Treatment: What to Bring and Expect
• Wear comfortable clothing
• Please bring a driver (especially for your first treatment)
• Sack lunch provided for patients
• Beverages are available
• TV and WiFi are available
3
Directions to the Stormont-Vail Cancer Center
From the North
Head south on Highway 75. Take the Gage Boulevard exit. Turn right (south)
on Gage Boulevard. Go to Sixth Street. Turn left (east) on Sixth Street. Go to
Washburn Avenue. Turn right (south) on Washburn Avenue. Go to Eighth
Street. At the intersection of Eighth and Washburn, turn left or go East one
block to Lane Street. Take another left or go North on Lane, then take a left
into the Stormont-Vail Cancer Center parking lot.
From the South
Head north on Highway 75 into downtown Topeka. Turn left (west) on Tenth
Street. Go to Lane Street. Turn right (north) on Lane Street. Go to Eighth Street
and just to the North of Eighth and Lane you will see the parking lot of the
Stormont-Vail Cancer Center. Take a left turn into the parking lot.
From the East
Take the Tenth Street exit off I-70. Turn left (west) on Tenth Street. Go to Lane
Street. Turn right (north) on Lane Street. Go to Eighth Street and just to the
North of Eighth and Lane you will see the parking lot of the Stormont-Vail
Cancer Center. Take a left turn into the parking lot.
From the West
Take the MacVicar Avenue exit off I-70. Turn right (south) on MacVicar
Avenue. Go to Sixth Street. Turn left (east) on Sixth Street. Go to Washburn
Avenue. Turn right (south) on Washburn Avenue. Go to Eighth Street. At
the intersection of Eighth and Washburn, turn left or go East one block to
Lane Street. Take another left or go North on Lane, then take a left into the
Stormont-Vail Cancer Center parking lot.
4
Contacting the Stormont-Vail Cancer Center
Stormont-Vail Cancer Center:
1414 S.W. Eighth Ave., Topeka, Kan. 66604
stormontvail.org
Telephone Numbers:
(785) 354-5300 or 1-800-354-0091
Fax: (785) 354-5309
Fax: (785) 270-4952
Nurse Triage Phone:
Drs. Hashmi and Boyd: (785) 270-4967
Drs. Petrik, Salamat and Einspahr: (785) 270-4950
Health Connections’ Nurse Information Line (after hours and weekends):
(785) 354-5225
Emergency: Dial 9-1-1
Outreach Clinics:
An outreach clinic is currently available with a medical oncologist from the
Stormont-Vail Cancer Center in Sabetha.
5
Stormont-Vail Mission/Vision/Values
Mission
Working together to improve the health of our community
Vision
Stormont-Vail will be a national leader in providing compassionate, high
quality, and efficient integrated care through collaboration that results in a
healthier community.
Values
• Service to Others: We meet or exceed the needs and expectations of those
we serve.
• Quality: We create an environment of trust, comfort and confidence
brought about by a competent, compassionate and caring staff.
• Teamwork: We do together what cannot be done alone.
• Respect: We honor the dignity and creative potential of each staff member.
• Viability: We assure our mission by remaining profitable.
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About the Stormont-Vail Cancer Center
The state-of-the-art Stormont-Vail Cancer Center is among the ranks of
specialty medical centers within the Stormont-Vail HealthCare family. Opened
in December 2006, the 31,500-square-foot facility is located at 1414 S.W.
Eighth Ave., Topeka.
The center consolidates the outpatient cancer services of Stormont-Vail and
Cotton-O’Neil and has the latest in technology, including one of the few
Trilogy Image-Guided Radiotherapy linear accelerator systems in the state of
Kansas and a PET/CT.
In addition, the center houses the Cotton-O’Neil medical and radiation
oncology practices, pediatrics hematology and oncology practices, a treatment
center and a clinical research center. There are also ancillary services for
patients offered such as nutritional counseling, social work and spiritual care.
Patient-focused care and convenience is the cornerstone of the center. Parking
is nearby, and an overhead canopy for pick up and drop off is just outside the
front door. Inside, services and reception areas are within just a few steps, as
well as a resource library for patients and families.
In the treatment center, patients have a choice of traditional private rooms,
family rooms with a larger area for family and friends, or open bays.
The cancer program at Stormont-Vail has its roots back to 1969 when Dr.
Howard Ward and Dr. Maurice Cashman, both sub-specialty trained internists
in hematology and medical oncology, joined Drs. Robert Cotton and Robert
O’Neil in their internal medicine practice. That practice, Internal Medicine PA,
eventually became Cotton-O’Neil Clinic, which joined Stormont-Vail Regional
Health Center and is part of Stormont-Vail HealthCare today.
Building Name:
The Stormont-Vail Cancer Center is in the Howard N. Ward, M.D., Medical
Building. Dr. Ward, a longtime Topeka specialist in hematology and medical
oncology, retired in September 2006.
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Accreditations and Honors
• Comprehensive Cancer Program with Commendation by the Commission
on Cancer of the American College of Surgeons.
• Accreditation for Radiation Oncology Services through the American College
of Radiology.
• Accreditation for PET/CT through the American College of Radiology.
• Founding partner of the Midwest Cancer Alliance. The Midwest Cancer
Alliance is a network of cancer professionals dedicated to increasing access
to the latest advancements in cancer care throughout the Heartland. The
MCA fosters collaboration and provides support to community oncologists
in an effort to enhance care for patients across the region, including access
to cutting-edge clinical trials, innovative prevention, early detection and
survivorship techniques.
• The majority of the treatment nurses at the Stormont-Vail Cancer Center
are certified nurses by the Oncology Nursing Certification Corporation. This
certification validates an individual’s specialized knowledge in cancer nursing.
• Stormont-Vail HealthCare is a Magnet designated facility by the American
Nurses Credentialing Center. That designation, held by less than 400 health
care organizations worldwide, sets high standards for excellence in nursing
and patient care.
8
Providers
The physicians who practice at the Stormont-Vail Cancer Center include
both medical oncologists and radiation oncologists. All have offices within
the cancer center. The medical oncologists are Cotton-O’Neil physicians who
are dedicated to the evaluation and treatment of adult and pediatric patients
with known or suspected hematology and oncology disorders. The radiation
oncologists are with Radiology and Nuclear Medicine with Stormont-Vail
HealthCare medical staff privileges.
Adult Medical Oncologists
Karissa W. Boyd, D.O.
Medical Degree: University of Health Sciences College of
Osteopathic Medicine, Kansas City, Mo.
Residency: Internal Medicine, University of Mississippi
Medical Center, Jackson, Miss.
Fellowship: Hematology and Oncology, University of
Mississippi Medical Center, Jackson, Miss.
Board Certifications: Internal Medicine
Clinical Interests: General oncology and hematology, with
special interest in breast cancer
Dr. Boyd has been a Cotton-O’Neil physician
since 2009.
David E. Einspahr, M.D.
Medical Degree: University of Nebraska School of Medicine,
Omaha
Residency: University of Kansas Medical Center, Kansas City
Fellowship: Medical Oncology and Hematology; University
of Kansas Medical Center, Kansas City
Board Certifications: Internal Medicine, Medical Oncology
and Hematology
Clinical Interests: Clinical trials in medical oncology and
inherited cancer syndromes
Dr. Einspahr has been a Cotton-O’Neil physician
since 1991.
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Mehmood Hashmi, M.D.
Medical Degree: Dow Medical College, Karachi, Pakistan.
Residency: Internal Medicine, University of Oklahoma
Health Sciences Center, Oklahoma City, Okla.
Fellowship: Hematology/Oncology, University of Kansas
Medical Center, Kansas City
Clinical Interests: Diagnosis and treatment of cancer
related to the prostate, breast, lung, kidneys, bladder,
testes, head and neck, as well as myeloma and lymphoma
Dr. Hashmi has been a Cotton-O’Neil physician
since 2012.
Edwin L. Petrik, M.D.
Medical Degree: University of Kansas School of Medicine,
Kansas City; Internship at Wesley Medical Center, Wichita
Residency: University of Kansas Medical Center Clinical
Associate Professor in the Department of Medicine
Oncology at the University of Kansas School of Medicine
Clinical Interests: All forms of solid tumors and general
internal medicine
Dr. Petrik has been a Cotton-O’Neil physician
since 1988.
Muhammad A. Salamat, M.D.
Medical Degree: Rawalpindi Medical College, University of
Punjab, Pakistan
Residency: (Internal Medicine): Vanguard West Suburban
Medical Center and Rush Oak Park Hospital, Chicago, Ill.
Fellowship: Hematology/Oncology, Saint Louis University
School of Medicine, St. Louis, Mo.
Dr. Salamat has been a Cotton-O’Neil physician
since 2013.
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Pediatric Medical Oncologists/Hematologists
Youmna Othman, M.D.
Medical Degree: American University of Beirut, Beirut,
Lebanon
Internship/Residency Pediatric: Women and Children’s
Hospital of Buffalo, Buffalo, N.Y.
Fellowship Pediatric Hematology/Oncology: University
Hospitals, Case Medical Center/Rainbow Babies and
Children’s Hospital, Cleveland, Ohio
Clinical Interests: Pediatric blood disorders including
hemophilia and thrombosis; sickle cell disease; pediatric
oncology specifically leukemia and solid tumors
Dr. Othman has been a Cotton-O’Neil physician
since 2012.
Jakica Tancabelic, M.D.
Medical Degree: University of Rijeka Medical School,
Rijeka, Croatia
Internship: Ogulin General Hospital, Ogulin, Croatia
Pediatrics Residency: University of Wisconsin, Marshfield,
Wis.
Pediatric Hematology/Oncology Fellowship: Columbia
University, New York City
Board Certification: Pediatrics; Pediatric Hematology
Oncology
Clinical Interests: Pediatric blood disorders including
hemophilia and thrombosis, sickle cell disease; pediatric oncology
Dr. Tancabelic has been a Cotton-O’Neil physician
since 2010.
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Radiation Oncologists
Stephen D. Coon, M.D., DABR
Medical Degree and Internship: University of Kansas School
of Medicine, Wichita
Residency: Indiana University School of Medicine,
Indianapolis, Ind.
Board Certified ACR
Dr. Coon has been on the Stormont-Vail Medical Staff
since 1987.
Russell E. Greene, M.D., DABR
Medical Degree and Internship: University of California,
Irvine Medical Center
Residency: Harvard University Joint Radiation Center,
Boston, Mass.; and University of California Los Angeles
Medical Center
Board Certified ACR
Dr. Greene has been on the Stormont-Vail Medical Staff
since 1983.
Judith Kooser, M.D., DABR
Medical Degree: Rush Medical College, Chicago
Residency: Rush-Presbyterian-St. Luke’s Medical Center,
Chicago
Board Certified ACR
Dr. Kooser has been on the Stormont-Vail Medical Staff
since 1985.
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Services at the Cancer Center
Clinical Research Trials
The Stormont-Vail Cancer Center has a comprehensive clinical research
program, which provides new and exciting therapeutics to patients with
cancer. The medical oncologists at the cancer center have been involved in
clinical research trials for more than 30 years to bring the most advanced
cancer care to our patients, and continue to progress in those efforts. Our
physicians have actively participated in the National Cancer Institute
Cooperative Groups, Southwest Oncology Group, Midwest Cancer Alliance
and were nationally recognized by the American Society of Clinical Oncology
for their clinical research contributions. Ask your doctor if a clinical trial is
right for you. A listing of clinical trials is available at: www.clinicaltrials.gov.
Dietitian
Consultations with a dietitian are available. A registered dietitian is
available on-site for no additional charge and offers counseling for: weight
management, side effect management, individualized diet plans, and healthy
lifestyle.
Educational Programs
Chemotherapy Education Class
This class is for all new cancer patients starting chemotherapy. In this class
patients and families will learn about resources and meet some of the key
staff available to them during and after treatment. They will hear about
social work services, dietitian services, palliative care, and the role of the
triage nurse. Patients will also watch a short chemotherapy video. The class
takes place on Monday mornings and Thursday afternoons. Please call (785)
270-4905 for more information.
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Look Good, Feel Better
This is a free program from the American Cancer Society designed for
women dealing with hair loss and skin changes from chemotherapy and
radiation. Attendees will learn specific techniques to help make the most
of their appearance while undergoing treatment Participants will also take
home a makeup package valued at $200. The program is offered at the
Stormont-Vail Cancer Center on a regular basis. Call the American Cancer
Society at (785) 273-4462.
Genetic Screening
Screening for genetic susceptibility or risk of developing cancer is available
through nurse practitioners or referral.
The Linear Accelerator
The linear accelerator in the StormontVail Cancer Center is an Image-Guided
Radiotherapy (IGRT) System. This system,
known as the Trilogy, is a powerful imageguided radiation therapy system that delivers
high-dose radiation to even the smallest
tumors. The equipment can target an area
as small as a pencil point, minimizing the
damage to healthy tissue.It also delivers
radiation doses more than 60 percent faster
than conventional linear accelerators used to
treat cancer, which means that patients can
receive treatments in much less time.
Mastectomy Aftercare Program
(Breast Prothesis & Foundation Fitting)
Professional fitting information and resources for a quality breast prosthesis
and foundation are provided to women who seek that service.
Meet and Greet with a Pet
Patients and families have an opportunity to interact with a four-legged
friend. Meets Wednesdays at 10 a.m. in the lobby of the cancer center.
Oncology Nurse Navigator
An oncology nurse navigator is assigned to new patients and will assist
patients and families with coordinating care and understanding the
treatment process.
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Palliative Care Program (Outpatient)
Palliative care is a specialty in medicine that utilizes an interdisciplinary
team to provide symptom management and support for patients and
families, at any stage of a serious diagnosis.
The dedicated team at the Stormont-Vail Cancer Center includes doctors,
nurses, social workers and spiritual care. The team is available to see patients
weekly in the clinic, as needed, and
strives to provide an extra layer of
support for patients and families
during their journey.
Outpatient palliative care can assist
with:
• Pain and symptom control
• Psychosocial support
• Attention to spiritual issues
• Improved communication among
patients, families and the provider
team
The goal of the palliative care team is to make every day the best it can be
for patients, by anticipating, preventing and treating symptoms. Ask your
physician about the benefits of palliative care or call (785) 354-5300.
The PET/CT
The Stormont-Vail Cancer Center had the first PET/CT in a 13-county region
in northeast Kansas. PET stands for positron emission tomography. CT
stands for computed tomography. With PET/CT capabilities, the equipment
simultaneously images and combines the results of two state-of-the-art
scanner technologies into a single exam: the highly sensitive PET scan picks
up actively growing cancer cells, and the CT scan provides a detailed picture
of the inside of your body to reveal the size and shape of abnormal cancerous
growths. PET/CT is one of the most powerful tools in cancer diagnosis and
staging.
Pharmacist
An on-site pharmacist is available for treatment needs at the cancer center.
Piano Music
Piano music is played periodically in the lobby of the cancer center for the
enjoyment of all.
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Social Work/Counseling Support
Consultations with a social worker are available by appointment. Call the
cancer center to set up an appointment at (785) 354-5300.
Social Workers assist with:
• Emotional Support/Counseling
• Financial/Employment Concerns
• Co-Pay and Prescription Assistance for Cancer Medications
• Transportation Concerns
• Connect You with Resources
• Advanced Healthcare Directives
Spiritual Care Services
Spiritual care services are available on-site every Tuesday.
Support Groups
Cancer Support Group
Meets Mondays at 11 a.m. to noon in the library of the cancer center. Open
to all cancer patients.
Head and Neck Cancer Support Group
Meets the second Wednesday of the month, 3:30 to 4:30 p.m. in the library
of the cancer center. For patients diagnosed with head and neck cancer.
Affiliated with SPOHNC (Support for People with Head and Neck Cancer).
Loved Ones Partnering for Support
Meets Tuesdays at 2 p.m. in the library of the cancer center. For caregivers
and loved ones of people with cancer.
Parents Partnering for Support
Meets the fourth Thursday of every month at 6 p.m. Call Leigh Ann at
(785) 270-4905 for location information. The support group is for parents of
pediatric cancer patients.
Tai Chi
This is an easy way for patients and families to improve their strength and
balance during and after treatment. The Tai Chi class can be beneficial
no matter what your age or physical limitations may be. Tuesdays at the
Stormont-Vail Cancer Center (3:30 p.m. hard, and 4:30 p.m. easy). For more
information, call (785) 354-5300.
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Community Resources
American Cancer Society at www.cancer.org
• Transportation - Road to Recovery: Volunteers provide transportation to
medical appointments
• Lodging
• Support for Breast Cancer Patients - Reach for Recovery
• Look Good, Feel Batter.
For reservations, call
(785)-273-4462 or 1-800-227-2345 National Chapter
1-800-359-1025 Local Chapter
Cancer Care at www.cancercare.org
Can search by cancer diagnosis for resources and educational materials
Has online support groups for patient, family, and caregivers
Financial Support- $100 for Adults $125 for Children, some income guidelines
1-800-813-HOPE
Leukemia/Lymphoma Society at www.lls.org
Financial Aid- $100 renewal every year, no income guidelines
Co-Pay Assistance, Information Resource Center
1-800-779-2417 Local Chapter
(914) 949-5213 National Chapter
Cleaning for a Reason www.cleaningforareason.org
For female cancer patients
Four free house cleanings while receiving treatment
Apply online or call 1-877-337-3348
Wigs, Hats, and Turbans
Free - American Cancer Society office in Topeka, 1-800-359-1025
Free - Findables, 4032 S.W. Huntoon, 273-2773
Hair Secrets - Fairlawn Plaza, 272-3600
Hair Expressions -3014 S.W. 29th St. Ste. 3, (785) 272-8550. Call to set up
appointment
See Additional Online Resources on Page 32
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Chemotherapy
Chemotherapy kills cells that are fast-growing, which may include some
of your healthy cells, resulting in possible side effects caused by cancer
treatment. Some side effects are temporary, but others may be long-term. You
may have many side effects or none at all. Speak with your physician or nurse
navigator about what to expect. Prior to your chemotherapy, medications will
be given to help present side effects, and following treatment you will receive
a prescription for home medications to manage side effects as needed.
Side effects may include:
• Anemia, or a decrease in the cells that transport oxygen in your body.
• Appetite changes
• Bleeding
• Constipation
• Fatigue
• Flu-like symptoms
• Fluid retention
• Hair loss
• Infection
• Infertility
• Mouth and throat changes
• Nausea and vomiting
• Nervous system changes, such as tingling/numbness in your hands and feet
• Pain
• Sexual changes
• Skin and nail changes
• Eye and vision changes
• Urinary, kidney, and bladder changes
Symptoms to report immediately:
• Fever of 100.5 or greater
• Not being able to eat
• Rash
• Diarrhea, nausea, or vomiting not controlled by medication
• Shortness of breath
• Extreme fatigue
• Pain not controlled by medication
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Safe Home Management After Chemotherapy
These instructions should be utilized for 48 hours after receiving
chemotherapy:
Body Wastes
You may use the toilet as usual. Flush twice with the lid closed. Wash your
hands well with soap and water afterwards, and wash your skin if urine
or stool gets on it. Pregnant women should avoid direct contact with
chemotherapy or contaminated waste.
Laundry
Wash your clothing or linen normally, unless they become soiled with
bodily waste (urine, stool, vomit). If that happens, put on gloves and handle
the laundry carefully to avoid getting contaminated waste on your hands.
Immediately place the contaminated items in the washer and wash as usual.
Do not wash other items with chemotherapy soiled items.
Mouth Care
Good oral care is important. Notify physician if sores or tenderness develop.
Other Helpful Information:
• It is safe for family members to have contact with you during chemotherapy.
Eating together, enjoying favorite activities, hugging, and kissing are all safe.
• It is safe for family members to use the same toilet as you. As long as any
chemotherapy waste is cleaned from the toilet, sharing is safe.
• If you do not have control of your bladder or bowels, use a disposable
plastic-backed pad, diaper, or sheet to absorb urine or stool. Change
immediately when soiled and wash skin with soap and water. If you have an
ostomy, your caregiver should wear gloves when emptying or changing the
bags.
• If you use a bedpan, urinal, or commode your caregiver should wear gloves
when emptying waste. Rinse container with water after each use and wash it
with soap and water at least once a day.
• If you vomit, your caregiver should wear gloves when emptying the basin.
Rinse the container with water after each use, and wash it with soap and water
at least once a day.
• Special precautions may be necessary if you plan to be sexually active during
your chemotherapy treatment. It is possible that traces of chemotherapy may
be present in vaginal fluid and semen for up to 48 hours after treatment.
Discuss with you doctor or nurse the safety of sexual activity during your
treatment.
19
Radiation Therapy
Skin Changes From Radiation Therapy
Radiation therapy can cause changes in your skin in the area where you
received treatment. Consider these steps to care for your skin in the treatment
area:
•
•
•
•
•
•
•
•
•
•
•
•
•
20
Check with your doctor or nurse before you put anything on your skin.
Protect your skin.
Make sure your clothing covers the area being treated when you are
outside.
Wear clothes that are loose.
Choose clothes and bed sheets made of soft cotton.
Use an electric razor if your doctor or nurse says you can shave.
Care for your skin.
Shower or bathe with warm, not hot, water. Don’t shower more than one
time a day.
If you bathe, limit baths to two times a week. Bathe for less than 30
minutes.
Gently pat your skin dry after showers or baths.
Don’t rub off the markings your radiation therapist made on your skin.
They show where to place the radiation.
Don’t use heating pads, ice packs, or bandages on the area getting
radiation.
Don’t use tanning beds.
Palliative Care
Palliative care is specialized medical care for people with serious illnesses. This
type of care is focused on providing patients with relief from the symptoms,
pain, and stress of a serious illness-whatever the diagnosis.
The goal is to improve the quality of life for both the patient and the family.
Palliative care is provided by a team of doctors, nurses, and other specialists
who work with a patient’s other doctors to provide an extra layer of support.
Palliative care is appropriate at any age and at any stage in a serious illness,
and can be provided together with curative treatment.
-Center to Advance Palliative Care
When is palliative care used in cancer care?
Palliative care is given throughout a patient’s experience with cancer. It should
begin at diagnosis and continue through treatment, follow-up care, and the
end of life.
If a person accepts palliative care, does it mean he or she won’t get cancer
treatment?
No. Palliative care is given in addition to cancer treatment. However, when
a patient reaches a point at which treatment to destroy the cancer is no
longer helping or is making the patient sicker, palliative care becomes the
best way possible to care for the patient and family. It will continue to be
given to alleviate the symptoms and emotional issues of cancer. Palliative care
providers can help ease the transition to end-of-life care.
What is the difference between palliative care and hospice?
Palliative care is offered to any patient of any age and at any stage of a serious
illness who may be experiencing multiple symptions or need an extra layer
of support. A person’s cancer treatment continues to be administered and
assessed while he or she is receiving palliative care.
Hospice care may be provided to a person when cancer therapies are no
longer controlling the disease. When a person has a terminal diagnosis and is
approaching the end of life, he or she might be eligible to receive hospice care.
Is there any research that shows palliative care is beneficial?
Yes. Research shows that palliative care and its many components are
beneficial to patient and family health and well-being. A number of studies in
recent years have shown that patients who have their symptoms controlled
and are able to communicate their emotional needs have a better experience
21
with their medical care. Their quality of life and physical symptoms improve.
In addition, the Institute of Medicine 2007 report Cancer Care for the Whole
Patient cites many studies that show patients are less able to adhere to their
treatment and manage their illness and health when physical and emotional
problems are present.
What issues are addressed in palliative care?
Palliative care can address a broad range of issues, integrating an individual’s
specific needs into care. The physical and emotional effects of cancer and
its treatment may be very different from person to person. Comprehensive
palliative care will take the following issues into account for each patient:
* Physical. Common physical symptoms include pain, fatigue, loss of
appetite, nausea, vomiting, shortness of breath, and insomnia. Many of these
can be relieved with medicines or by using other methods, such as nutrition
therapy, physical therapy, or deep breathing techniques. Also, chemotherapy,
radiation therapy, or surgery may be used to shrink tumors that are causing
pain and other problems.
* Emotional and coping. Palliative care specialists can provide resources to
help patients and families deal with the emotions that come with a cancer
diagnosis and cancer treatment. Depression, anxiety, and fear are only a few
of the concerns that can be addressed through palliative care. Experts may
provide counseling, recommend support groups, hold family meetings, or
make referrals to mental health professionals.
* Practical. Cancer patients may have financial and legal worries, insurance
questions, employment concerns, and concerns about completing advance
directives. For many patients and families, the technical language and specific
details of laws and forms are hard to understand. To ease the burden, the
palliative care team may assist in coordinating the appropriate services. * Spiritual. With a cancer diagnosis, patients and families often look more
deeply for meaning in their lives. Some find the disease brings them more
faith, whereas others question their faith as they struggle to understand why
cancer happened to them. An expert in palliative care can help people explore
their beliefs and values so that they can find a sense of peace or reach a point
of acceptance that is appropriate for their situation.
Can a family member receive palliative care?
Yes. Family members are an important part of cancer care, and, like the
patient, they have a number of changing needs. It’s common for family
members to become overwhelmed by the extra responsibilities placed upon
them. Many find it difficult to care for a relative who is ill while trying to
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handle other obligations, such as work and caring for other family members.
Palliative care can help families and friends cope with these issues and give
them the support they need.
How is palliative care given at the end of life? Making the transition from active treatment to end-of-life care is a key part of
palliative care. A palliative care team can help patients and their loved ones
prepare for physical changes that may occur near the end of life and address
appropriate symptom management for this stage of care.
Who pays for palliative care?
Palliative care services are usually covered by health insurance. Medicare and
Medicaid also pay for palliative care, depending on the situation. If patients
do not have health insurance or are unsure about their coverage, they should
check with a social worker or their hospital’s financial counselor.
-National Cancer Institute
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When Treatment is Over
The end of cancer treatment is often a time to rejoice. You are probably
relieved to be finished with the demands of treatment and are ready to put the
experience behind you. Yet at the same time, you may feel sad and worried.
It’s common to be concerned about whether the cancer will come back and
what you should do after treatment.
When treatment ends, you may expect life to return to the way it was before
you were diagnosed with cancer. But it can take time to recover. You may have
permanent scars on your body, or you may not be able to do some things you
once did easily. Or you may even have emotional scars from going through
so much. You may find that others think of you differently now - or you may
view yourself in a different way. One of the hardest things after treatment is
not knowing what happens next.
Those who have gone through cancer treatment describe the first few months
as a time of change. It’s not so much “getting back to normal” as it is finding
out what’s normal for you now. People often say that life has new meaning
or that they look at things differently now. You can also expect things to keep
changing as you begin your recovery.
Your new “normal” may include making changes in the way you eat, the
things you do, and your sources of support.
Once you have finished your cancer treatment, you should receive a followup cancer care plan. Follow-up care means seeing a doctor for regular medical
checkups. Your follow-up care depends on the type of cancer and type of
treatment you had, along with your overall health. It is usually different for
each person who has been treated for cancer.
In general, survivors usually return to the doctor every three to four months
during the first two to three years after treatment, and once or twice a year
after that. At these visits, your doctor will look for side effects from treatment
and check if your cancer has returned (recurred) or spread (metastasized) to
another part of your body.
At these visits, your doctor will:
• Review your medical history
• Give you a physical exam
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Your doctor may run follow-up tests such as:
• Blood tests
• MRI or CT scans. These scans take detailed pictures of areas inside the body
at different angles.
• Endoscopy. This test uses a thin, lighted tube to examine inside the body.
After cancer treatment, many survivors want to find ways to reduce the
chances of their cancer coming back. Some worry that the way they eat,
the stress in their lives, or their exposure to chemicals may put them at risk.
Cancer survivors find that this is a time when they take a good look at how
they take care of themselves. This is an important start to living a healthy life.
When you meet with your doctor about follow-up care, you should also ask
about developing a wellness plan that includes ways you can take care of your
physical, emotional, social, and spiritual needs. If you find that it’s hard to talk
with your doctor about these issues, it may be helpful to know that the more
you do it, the easier it becomes. And your doctor may suggest other members
of the health care team for you to talk with, such as a social worker, clergy
member, or nurse. -National Cancer Institute
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Follow-up Care
All cancer survivors should have follow-up care. Knowing what to expect after
cancer treatment can help you and your family make plans, lifestyle changes,
and important decisions.
Some common questions you may have are:
• Should I tell the doctor about symptoms that worry me?
• Which doctors should I see after treatment?
• How often should I see my doctor?
• What tests do I need?
• What can be done to relieve pain, fatigue, or other problems after treatment?
• How long will it take for me to recover and feel more like myself?
• Is there anything I can or should be doing to keep cancer from coming back?
• Will I have trouble with health insurance?
• Are there any support groups I can go to?
Coping with these issues can be a challenge. Yet many say that getting
involved in decisions about their medical care and lifestyle was a good way for
them to regain some of the control they felt they lost during cancer treatment.
Research has shown that people who feel more in control feel and function
better than those who do not. Being an active partner with your doctor and
getting help from other members of your health care team is the first step. At
your first follow-up visit, talk with your doctor about your follow-up care plan.
-National Cancer Institute
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Caregivers’ Support
At the Stormont Vail Cancer Center, we recognize that patients aren’t the only
ones on this new journey. There are many positive experiences that come
from being a caregiver, such as discovering your own personal strength and
deepening your relationship with the patient (Haley, 2003). However, there are
many stresses involved as well.
Being a caregiver can take away time from your other duties of life, including
work, family, and taking care of your own needs. The added stress can affect
your physical and mental well being, so it is important to continue to take
good care of yourself.
The team at the Stormont Vail Cancer Center is dedicated to giving you the
support that you need when you need it. Please don’t hesitate to ask for
assistance if you have questions, or are struggling to cope.
Resources
Connecting with a group of people who are walking a similar path can be
very helpful in coping with being a caregiver. Support groups are available in
person at the cancer center on Mondays from 11 a.m. to noon in the library
(patient/family support group), and a caregiver specific group on Tuesdays
from 2 to 3 p.m. in the library at the cancer center.
Online support groups are available at www.cancercare.org.
Our social workers and nurses are also available as an extra support as needed.
Haley, W.E., 2003. Family caregivers of elderly patients with cancer: understanding
and minimizing the burden of care. J Support Oncol 1 (4 Suppl 2): 25-9.
Exercise
General Exercise Guidelines for Cancer Survivors
Here are some general guidelines for physical activity during and after cancer
treatment. Always check with your physician before starting an exercise
program.
Is it safe? Yes!
Studies show that moderate exercise (exercise that raises your heart rate, makes
you break a sweat, but not so hard that you cannot talk) is generally safe for
people with a cancer diagnosis. Start slow but try to go!
What if I don’t feel like I can exercise on some days? That’s ok!
• Adjust your daily exercise routine
• Stay as physically active as you can
• Return to your short-term goal as soon as you are able
• Stay focused on your long-term goal
For more information, see the Centers for Disease Control
website: www.cdc.gov/physicalactivity
Reprinted with permission
© 2011 C.M. Jankowski & E.E. Matthews (Oncology Nursing Society)
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Glossary
Cancer
A term for diseases in which abnormal cells divide without control and can
invade nearby tissues. Cancer cells can also spread to other parts of the body
through the blood and lymph systems. There are several main types of cancer.
Carcinoma is a cancer that begins in the skin or in tissues that line or cover
internal organs. Sarcoma is a cancer that begins in bone, cartilage, fat, muscle,
blood vessels, or other connective or supportive tissue. Leukemia is a cancer
that starts in blood-forming tissue such as the bone marrow, and causes
large numbers of abnormal blood cells to be produced and enter the blood.
Lymphoma and multiple myeloma are cancers that begin in the cells of the
immune system. Central nervous system cancers are cancers that begin in the
tissues of the brain and spinal cord. Also called malignancy.
Chemotherapy
Treatment with drugs that kill cancer cells.
Clinical trial
A type of research study that tests how well new medical approaches work in
people. These studies test new methods of screening, prevention, diagnosis, or
treatment of a disease. Also called clinical study.
Combination chemotherapy
Treatment using more than one anti-cancer drug.
Complete blood count
A test to check the number of red blood cells, white blood cells, and platelets
in a sample of blood. Also called blood cell count and CBC.
Constipation
A condition in which stool becomes hard, dry, and difficult to pass, and bowel
movements don’t happen very often. Other symptoms may include painful
bowel movements, and feeling bloated, uncomfortable, and sluggish.
CT scan
A series of detailed pictures of areas inside the body taken from different
angles. The pictures are created by a computer linked to an X-ray machine.
Also called CAT scan, computed tomography scan, computerized axial
tomography scan, and computerized tomography.
Linear accelerator
A machine that uses electricity to form a stream of fast-moving subatomic
particles. This creates high energy radiation that may be used to treat cancer.
Also called linac, mega-voltage accelerator, and MeV linear accelerator.
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Nurse practitioner
A registered nurse who has additional education and training in how to
diagnose and treat disease. Nurse practitioners are licensed at the state level
and certified by national nursing organizations. In cancer care, a nurse
practitioner may manage the primary care of patients and their families, based
on a practice agreement with a doctor. Also called advanced practice nurse,
APN, and NP.
Oncology
The study of cancer.
Ostomy
An operation to create an opening (a stoma) from an area inside the body to
the outside. Colostomy and urostomy are types of ostomies.
PET scan
A procedure in which a small amount of radioactive glucose (sugar) is injected
into a vein, and a scanner is used to make detailed, computerized pictures of
areas inside the body where the glucose is used. Because cancer cells often use
more glucose than normal cells, the pictures can be used to find cancer cells in
the body. Also called positron emission tomography scan.
Palliative care
Specialized medical care for people with serious illnesses. This type of care is
focused on providing patients with relief from the symptoms, pain, and stress
of a serious illness-whatever the diagnosis. The goal is to improve quality of
life for both the patient and the family. Palliative care is provided by a team of
doctors, nurses, and other specialists who work with a patient’s other doctors
to provide an extra layer of support.
Radiation therapy
The use of high-energy radiation from X-rays, gamma rays, neutrons, protons,
and other sources to kill cancer cells and shrink tumors. Radiation may come
from a machine outside the body (external-beam radiation therapy), or it may
come from radioactive material placed in the body near cancer cells (internal
radiation therapy). Systemic radiation therapy uses a radioactive substance,
such as a radiolabeled monoclonal antibody, that travels in the blood to
tissues throughout the body.
Staging
Performing exams and tests to learn the extent of the cancer within the body,
especially whether the disease has spread from the original site to other parts
of the body. It is important to know the stage of the disease in order to plan
the best treatment.
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Survivorship
In cancer, survivorship covers the physical, psychosocial, and economic
issues of cancer, from diagnosis until the end of life. It focuses on the health
and life of a person with cancer beyond the diagnosis and treatment phases.
Survivorship includes issues related to the ability to get health care and
follow-up treatment, late effects of treatment, second cancers, and quality of
life. Family members, friends, and caregivers are also part of the survivorship
experience.
-National Cancer Institute & Center to Advance Palliative Care
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Online Resources
American Cancer Society - www.cancer.org
American Institute of Cancer Research - www.aicr.org
National Cancer Institute - www.cancer.gov
Leukemia and Lymphoma Society - www.lls.org
Cancer Care - www.cancercare.org
Cancer Support Community - www.cancersupportcommunity.org
Gilda’s Club Kansas City - www.gildasclubkc.org
LUNGevity Foundation - www.lungevity.org
Lung Cancer Alliance - www.lungcanceralliance.org
4th Angel - www.4thangel.org
Living Beyond Breast Cancer - www.lbbc.org
I’m too Young For This! Cancer Foundation - www.stupidcancer.org
Fertile Hope - www.fertilehope.org
Locks of Love - www.locksoflove.org
Sarcoma Alliance - www.sarcomaalliance.org
Support For People With Oral and Head and Neck Cancer - www.spohnc.org
For Children:
American Childhood Cancer Organization - www.acco.org
CureSearch: National Childhood Cancer Foundation and Children’s
Oncology Group - www.curesearch.org
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1414 S.W. 8th Ave.
Topeka, Kan. 66604
stormontvail.org
Rev. 03/14