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If You’ve Been Diagnosed with Cancer: Being an Employee of (Company Name)
Who Has Cancer
If you have been diagnosed with cancer, you’re likely to have many questions and concerns. For
example, you may be asking:
 What do I need to do now? Where do I start?
 What kind of treatment will I need, and where should I get it?
 What will the impact be on my job?
 What benefits do I have that will help me?
The best approach is to take one step at a time, gathering information, considering your options and
talking to doctors, family members and others whom you trust before making decisions.
As your employer, we want to work with you and support you during this challenging time. We offer a
range of employee benefits intended to help you. [Employer: link to SPD and/or sections of benefits
below] Human resources department employees are available to answer questions about your benefits
and other programs that may help you during this time. They can discuss options with you to help you
continue working, plan for absences from work for treatment and help you return to work after an
This Cancer Benefits and Resource Guide focuses on some of the
issues you need to think about soon after your diagnosis and in
the future. It’s intended to help you find the information you
need, understand the benefits and programs that may be
available to you and point you to reliable sources of information.
We encourage you to gather information and consider what is
best for you, based on your unique concerns, needs and
preferences. The section of this Guide called “My Loved One Has
Been Diagnosed with Cancer” is a resource that you can share
with your loved ones so you can support each other.
A Note on Accessing Cancer
Information on the Internet
You should use caution when
accessing information on the
Internet, from blogs or on message
boards. Some of this information may
be misleading or incorrect.
Throughout this Guide we provide
links to quality sources that provide
accurate, evidence-based
The Guide covers the following topics:
 Understanding Your Diagnosis
 Choosing a Doctor to Treat Your Cancer
 Treatment: Deciding What’s Right for You
 Understanding Your Health Plan
 Coping with a Cancer Diagnosis: Finding Resources for Support and Guidance
 Becoming an Empowered Patient--and Why it Matters
Getting Help for Symptoms and Side Effects
Balancing Work and Your Health
Planning Ahead
Recovery and Survivorship
The Guide also has a section on cancer risk, which focuses on topics that may be of interest to you
whether or not you have cancer:
 What is Cancer?
 Your Potential Risk of Developing Cancer
 How You Can Reduce Your Risk of Cancer
Understanding Your Diagnosis
You may still be in a state of shock and confusion after hearing that you have cancer. It’s completely
normal to feel that way. This section is designed to help you take a deep breath and think about some
things that are important to deal with right from the start.
While it’s natural to be upset by a cancer diagnosis, it’s also important to remember that more and
more cancers can now be treated successfully.5 According to the National Cancer Institute, there were
an estimated 13.7 million cancer survivors in the U.S. in 2012. The best way to deal with your diagnosis
is to take charge of your health by learning more about your illness and treatment options.
It’s understandable to want to start treatment right away, but that isn’t always the best decision. It’s
important to know that, for most kinds of cancer, it’s safe to take some time to think things through.
You’ll want to talk to your doctor about a reasonable time frame for making sure:
 Your diagnosis is correct;
 You’ve chosen a doctor who has a lot of experience in treating your kind of cancer; and
 You’ve thought through your options and decided on the treatment that's best for you.
First, make sure you’ve been given an accurate diagnosis. Without the right diagnosis, it will be
impossible to get the right treatment. Therefore, it is critical that you talk with your doctor about the
value of getting a second opinion on the procedures that were done to make your diagnosis. Procedures
may have included review of tissue or blood by a pathologist and imaging studies such as X-rays, CT
scans or an MRI. If a second opinion makes sense for you, you should talk about how the second
opinion can be done quickly to avoid delaying the start of your treatment.
Your diagnosis will be made by a pathologist, a doctor who examines tissue or blood to determine if
cancer is present and if so, what type of cancer. Some pathologists specialize in identifying specific kinds
of cancer, such as breast cancer or brain tumors. Because these pathologists are specialists, they are
more likely to make an accurate diagnosis.
Some types of cancer are rare and can be difficult to identify accurately. If your doctor suspects that you
have one of these rare cancers, it is especially important that a pathologist who specializes in that type
of cancer makes the diagnosis. An accurate diagnosis means that you will get treatment that is most
likely to be effective. Pathologists who specialize are most often found in large cancer centers. If your
cancer wasn’t diagnosed by a specialist the first time, you can ask your doctor to send your tissue or
blood to a specialist for a second opinion.
[Employer: Provide information here about programs you offer that could help employees and their
dependents decide on a second opinion, find a doctor or cancer center and get more information about
cancer. This may include a cancer center of excellence or care management program or a program that
specializes in ensuring that people receive an accurate diagnosis and appropriate treatment.]
Choosing a Doctor to Treat Your Cancer
Choosing your doctor is also one of the most important decisions you’ll make, and the place to begin is
with the doctor who found your cancer. Ask questions such as the following: “If you found out that you
or someone close to you had this cancer, which doctor would you see for treatment?” or “If you had this
kind of cancer, how would you go about deciding where to be treated?” If your doctor thinks you may
have cancer but isn’t sure, you can ask, “If you were in my place, which doctor would you see? Whom
would you see to find out if you had cancer or to identify what kind?”6
It’s important for you to feel that you can have open, honest discussions with your doctor. You’ll want to
choose a doctor who regularly treats people with your kind of cancer. Your doctor should be willing and
able to tell you about his or her experience in treating your type of cancer or performing the type of
surgery you need. If the doctor acts angry or defensive when you ask questions, you may want to find
another doctor.
Here are some questions you may want to ask the doctor who diagnosed you. Keep in mind that there
are no right-or-wrong answers to these questions that will tell you which doctor is “the best.” However,
it’s worth finding out about a doctor’s experience as long as it doesn’t delay the start of treatment for
too long.
1. “If I wanted to get a second opinion about my treatment, where would you suggest I go?”
2. “Can you recommend someone who sees a lot of patients with my type of cancer (or does a
lot of surgeries like the one I need)?”
3. “Who would you see if you were in my position?”
You can also try to find out the answers to these questions:
 Is the doctor Board certified? Doctors who treat people with cancer can choose to receive
additional training and take exams to receive Board certification in specialties such as medical
oncology (cancer), hematology (cancers and other diseases of the blood), gynecologic oncology
(cancers of the female reproductive tract) or surgery.
 Does the doctor have experience with the kind of cancer you have? How many patients with
your kind of cancer does the doctor treat each year?
Does the doctor refer to evidence-based guidelines in deciding which treatment to recommend?
The source that most doctors who treat cancer use are the NCCN Clinical Practice Guidelines in
Oncology (NCCN Guidelines®).
If you need surgery, how often does the surgeon perform the kind of surgery you need? How
many surgeries like yours has the surgeon performed during the past year?
How often is this type of surgery performed at the hospital where your surgery will be done?
The surgeon’s experience is important, and so is the experience of the patient care team at the
hospital. Hospital Safety Score provides information on hospital safety measures.
Is the doctor “in network” – that is, part of your health plan’s network? By using a doctor in
your health plan network, you'll reduce the amount that you have to pay out of pocket. It’s
important to know this about all the doctors that treat you, including anesthesiologists and
Can the doctor admit patients to a hospital that’s in your health plan network and that you are
willing to go to?
It’s also important to ask yourself if you feel comfortable with the doctor. Is he or she someone who
listens to you and answers your questions in a way that you can understand? If not, you should feel free
to consider finding another doctor.
Some health plans offer information about which doctors and hospitals have documented expertise in
treating specific kinds of conditions. You can call your health plan and see if representatives can provide
any recommendations.
Most people prefer to receive treatment close to home. Fortunately, most people can get excellent care
in their local community. But if you have a rare cancer or require complex treatment, it can be
important to be evaluated at a large cancer center and receive part or all of your treatment there. Large
cancer centers – especially those that have received designation from the National Cancer Institute (NCI)
– have teams of doctors who specialize in specific types of cancer and work together to evaluate and
treat patients. These teams will include specialists who work together and treat people with your kind of
cancer every day.
Depending on where you live, there may be a large cancer center or teaching hospital nearby that offers
specialized cancer programs. If there isn’t a large cancer center in your area, are you willing and able to
travel to a cancer center that specializes in your type of cancer or treatment? Check with your health
plan to find out if it includes specialists in treating your type of cancer. Coordination between doctors at
large cancer centers and doctors in the community is very common. So even if you begin with surgery or
other specialized treatment at a large cancer center, you can probably receive most of your other
treatment (such as chemotherapy and radiation therapy) and follow-up care in your local community.
If you travel to another city to receive care at a large cancer center, your out-of-pocket costs (except for
traveling and lodging) should be about the same as they would be if you were treated in your
community. In any case, it’s important that you find out what your expenses will be upfront. To do so,
call your health plan’s customer service number. For more information on this issue, go to
“Understanding Your Health Plan.”
Many cancer centers have special housing options available, such as a Hope Lodge or arrangements for
discounted lodging at nearby hotels and motels. If the patient is a child, you may want to explore
housing options through Ronald McDonald Houses near many hospitals.
(Employer: Add information here regarding coverage of travel and other travel expenses, if offered.)
The American Cancer Society website-- a great deal of
information about determining the best course of treatment. The site has questions to ask in choosing a
doctor, as well as a worksheet to help you gather and use that information.
Although it’s important to be open to accepting help and support, sometimes people offer help
that you don’t want or need. Although you’ll want to thank them for their concern, feel free to
tell them that you’ll let them know if you need anything.
People may also offer unwanted advice, often because they don’t know what else to say. It’s up
to you to decide how to deal with this. It’s up to you to decide how to deal with this. You don’t
have to respond at all. Otherwise, say thank you and let it go.2
Below are other sources of information on many kinds of cancer and on choosing a provider:
American Society of Clinical Oncology:
Cancer Support Community:
LIVESTRONG Foundation:
National Cancer Institute (part of the National Institutes of Health):
Treatment: Deciding What’s Right for You
Depending on the type of cancer you have, you may be offered one or several treatment options. It’s
important to understand all of your options, the advantages and the likely side effects of each one. You
should take the time to gather information, consider recommendations from the doctors you’ve seen
and then decide what makes the most sense for you.
As you look at your treatment options, make sure you are clear about what you can realistically expect
from treatment. Talk with your doctor to better understand your type and stage [LINK to information
below, in text box] of cancer, as well as what your doctor believes is best for you. Share your feelings,
hopes, fears and concerns with your doctor. You are a unique individual; what’s right for someone else
may not be the right choice for you.
First, understand the goal of your treatment. It may be to cure your cancer, slow or control its growth,
or extend your life. Some treatments are for the purpose of controlling pain and other symptoms.
Surgery, chemotherapy and radiation can have difficult side effects, so it's important for you to weigh
the pros and cons and make a decision that you’re comfortable with. In some cases, the best choice may
be to have no treatment beyond what is needed to manage your symptoms.
Cancer Staging
Getting an accurate diagnosis, including stage
and grade when applicable, is essential in
selecting the treatment best suited to a
particular cancer.
The system used most often to describe the
extent of a cancer is called the TNM staging
system. Most, but not all, types of cancer are
classified by stage. In this system, each of the
letters – T, N and M – describes the growth of
the cancer. The T category describes the size
of the tumor (a cluster of abnormal cells)
measured in centimeters (1 inch = 2.54
centimeters) and the tumor’s growth into
nearby tissues. The N category describes the
extent of the cancer in nearby lymph nodes.
The M category indicates if the cancer has
spread to distant organs (for example, from
the lung to the brain).
The information from each of these three
categories is combined to assign a stage to the
cancer. The stages identify tumor types that
have a similar outlook, or prognosis, for cure
or control and are treated in a similar way.
Some cancers are grouped by grade, which
indicates how much the cancer cells look like
normal cells. The grade helps to predict how
aggressive the cancer is likely to be. The more
abnormal the cells are, the more aggressive
the cancer.
If you are in a position to do so, choose your
treatment with the hope that you will live for many
years. In that case, be aware that some treatments
have side effects that may have a major impact on
your life. For example, some treatments affect a
woman's ability to bear children or a man’s ability
to father a child. If you want to have children in the
future, talk to your doctor about what can be done
to ensure that this can happen down the road. It’s
critical to do this before you start treatment.
Some chemotherapy drugs cause nerve damage
that can cause loss of feeling in your hands and
feet. If activities that involve using your hands, such
as playing a musical instrument, painting, or
woodworking are important to you, talk with your
doctor about treatment options that will minimize
[For online version, consider including video clips of
patient-oncologist discussions.]
The right treatment choices will depend on your
diagnosis, other health conditions you may have
and your personal preferences. Some treatments
may allow you to continue working or take less
time off and continue with other activities that are
important to you. Cancer treatments today have
come a long way from years ago. Many
medications that reduce side effects are available,
making it possible to continue working and
maintain your usual schedule and activities.7
Getting a Second Opinion
To help you with the decision-making process, the Cancer Support Community has developed a decisionsupport program called Open to OptionsTM. The program is designed to help individuals develop a list of
questions focused on their personal goals and objectives for treatment and to improve communication
between patients and their doctors about treatment decisions. You may find the information provided
by this program especially valuable as you discuss your options with your doctors.
As discussed earlier, after receiving a cancer diagnosis, it's best to slow down, consider your options,
and, if it makes sense, get a second opinion. Getting a second opinion is an especially good idea if you’re
uncertain about your doctor’s expertise or the proposed treatment. Consider getting a second opinion
You want to be sure you’ve explored all options.
You think your doctor underestimates how serious your illness is.
Your doctor doesn’t know exactly what’s wrong with you.
You have a rare or unusual cancer.
You want to know if there may be other treatment options.
Your insurance plan requires it.
You just aren’t comfortable with your current doctor or the proposed treatment.
If you decide to get a second opinion, ask to have your medical records, original X-rays, pathology slides
and test results sent to this doctor. In some instances, you may be able to take copies of your records to
the new doctor yourself. Often, the results of tests you have already had can be sent to the second
doctor, so you won’t have to repeat them.6
[Employers: Provide information about any programs you offer that can help people decide whether to
get a second opinion and where to go for care.]
The National Comprehensive Cancer Network (NCCN) has developed cancer treatment guidelines for
doctors that cover most cancers. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®)
describe treatment options that are based on scientific evidence and the consensus of experts in that
type of cancer.
The Guidelines for doctors can be found at Several of these Guidelines
are available in a format that makes the information easy for patients and their families to understand.
NCCN Guidelines for Patients® can be found at You can use these
Guidelines to better understand your diagnosis and discuss your treatment options with your doctor.
Reliable information about treatment for specific kinds of cancer can be found on these websites:
American Cancer Society:
American Society of Clinical Oncology:
Cancer Support Community:
or call 1-888-793-9355.
National Cancer Institute (part of the National Institutes of Health):
National Comprehensive Cancer Network:
Clinical Trials
Your oncologist may suggest that you receive treatment by being part of a clinical trial. In a
clinical trial, a new treatment is compared to the best current treatment to find out if the new
treatment might be better.1 New, more effective cancer treatments are available because
people like you have been willing to take part in clinical trials. You can ask your doctor about
clinical trials that might be available to treat your condition. Your health plan covers the costs
of your participation in a clinical trial [with these limitations, etc. – employer should
Resources on Clinical Trials
National Cancer Institute:
Coalition of Cancer Cooperative Groups:
Understanding Your Health Plan
Your health plan will cover most of the costs of your cancer treatment. With that said, it’s important to
know which doctors and hospitals are in your health plan network. If you choose to receive care from
doctors or hospitals that aren’t in the network, you’ll probably have to pay more of the costs, and
potentially a great deal more. Therefore, before you choose a provider outside the plan’s network, it’s
worth calling the health plan to find out what it may cost you. The extra cost may run into thousands of
dollars or more. More expensive care is not necessarily better care.
How much you will be responsible for paying is just one aspect of your care that you need to consider.
Finding out which treatments, physicians or hospitals are and are not covered by the health plan will
give you a sense of how much the treatment will cost and whether you can afford it. Even during this
difficult time, it’s all right to think about what you can afford. In fact, it’s necessary and important to
consider cost and be realistic when making treatment decisions. [Employer should customize this to
describe their benefits and link to the SPD and applicable sections of copayments and coinsurance.
Include information on how employees and their dependents can get answers to questions about their
coverage and financial responsibilities. ]
As you review your health plan benefits, look for information about the following:
 Deductible: The amount you’ll have to pay toward medical expenses before your plan starts to
pick up the costs.
 Copayment: A fixed amount you pay for a service, such as $20 for each office visit or $100 when
you go to the emergency room.
 Coinsurance: A percent of the costs you’ll have to pay, such as 20% of eligible charges. Note
that you may have to pay a larger portion of the cost if you choose to receive care from
physicians or hospitals that are not in your network.
Out-of-pocket maximum: The highest amount you will need to pay, annually, before your plan
covers your costs in full. You may have a higher out-of-pocket maximum if you use doctors and
hospitals that are not in your network.
Exclusions: Medical treatments or medications that your plan doesn’t cover.
Notification or prior authorization requirements: Specific services – such as hospital admissions,
certain tests and drugs – that require you, your doctor or hospital to notify the plan before you
receive the services. Some services, such as transplants, may require that you be treated by a
“preferred provider” or at a “center of excellence” in order to receive the highest level of
Coping with a Cancer Diagnosis: Finding Resources for Support and Guidance
Most people feel upset, scared and distressed when they find out they have cancer. Some people
experience depression as well. It can be helpful and reassuring to share your feelings with others who
are “in the same boat” and find out if they have similar reactions, feelings and concerns. Being open to
accepting support from others – family, friends and strangers going through a similar experience – can
help you cope. Providing support to others can also make you feel better.
As part of your employee benefits, we offer programs that can help you find the information and
support you need while dealing with cancer. [Employer can list the programs it offers, such as a
nurseline service, care management program, EAP, etc.]
Many resources are available to help you find information and access to others being treated for the
same kind of cancer. For example, many cancer centers and hospitals offer cancer support groups. The
American Cancer Society can connect you to resources in your community. If you don’t live near these
resources, or if you’re uncomfortable attending a support group in person, there are many online
resources and support groups available as well.
The following organizations offer a wealth of information online and by phone and can connect you
with reliable resources, support groups and other types of assistance in your community.
American Cancer Society at or call 1-800-227-2345
Cancer Care at or call 800-813-HOPE (4673)
LIVESTRONG Foundation at or call 1-855-220-7777
The Cancer Support Community at or call 1-888-7939355
Your Employee Assistance Program (EAP) is another important source of information. Most EAPs can
help with issues you could face when dealing with cancer, including:
 Help with coping strategies, anxiety and depression;
 Finding support resources in your community and online;
 Referral to legal services;
Referral to financial counselors;
Information on sources that may be able to assist with paying for your medical treatment or
prescriptions if they aren’t fully covered by your health plan, such as Patient Advocate
Foundation (PAF); and
 Help with workplace issues.
[Employer: Insert any additional employer-specific information as well as contact information]
Becoming an Empowered Patient--and Why it Matters
Not so long ago, being a patient meant passively accepting what your doctors told you and not asking
too many questions. Thankfully, this has changed. Being an empowered patient means that you actively
participate in making choices with your health care team. That means that you do what you can to take
more control over your situation. You can begin by doing your best to understand what your diagnosis
means, what treatment options are available and what you can do to feel as well as possible during
treatment and recovery.
The following list includes a number of practical things you can do to make the most of appointments
with your doctors and other members of the health care team.
1. Write down all the questions you want to ask your doctors so you won’t forget any during the
appointment. You might want to ask a family member or trusted friend to help you keep track
and get organized so you can make the best use of the time you have with your doctors.
2. Take a family member or friend with you to appointments. This person can make sure you get
answers to all of your questions. He or she can write down the answers so you can concentrate
on listening. Also, you may find it easier to discuss your options and feelings with that person if
he or she has heard the same information. You can also ask your doctor if you can record the
discussion so you can listen to it later.
3. When you talk with your doctor about your treatment options, think about what will be
important to you during treatment and after you've completed it. This may include thinking
about financial issues. Consider treatment options and their side effects in light of the work and
personal activities that are important to you.
4. If you plan to have children, talk about what can be done to help ensure that you can do so.
5. Keep track of information you receive. Use a notebook, folders or a three-ring binder to organize
information about your diagnosis, treatments and other issues. Keep a notebook or calendar to
track your appointments, what treatments are scheduled and received and whom you can
contact with questions or problems between appointments.
6. Find out when you should call your doctor right away, such as for a high fever, and what you
should do if a problem occurs after regular office hours. More important, find out what you can
do to help prevent emergency situations.
7. Be honest with yourself and your doctor about how you feel, both physically and emotionally.
If you’re in pain, tired or experiencing other symptoms, don’t suffer in silence. More
often than not your doctors can treat symptoms and side effects and help you find ways
to control or reduce them.
 If you’re feeling anxious or depressed, it’s important to tell your doctor so you get the
care you need. If you’re depressed, it can be harder for you to follow your treatment
plan and recover.
Be sure to tell your doctor about all the medications you’re taking. This includes prescription
drugs, over-the-counter medications, supplements, herbal products and vitamins. Some of these
products can interfere with your treatment.
Make sure you understand and follow instructions for taking medications. In addition, go to all
your scheduled appointments and use recommended self-care techniques.
Tell your doctor about any family history of cancer or other diseases. Information about family
history and cancer risk can be found in the “Cancer Risk” section of this Guide.
Take advantage of support programs and services. Support from family members, friends and
others who have had similar experiences can help you feel more in control. You may also find
support within your faith community.
Consider setting up a page on a website such as to allow people to
follow your progress and leave messages. This will reduce calls and questions you and your
family may not be up to handling.
Ask family members and friends for help with practical tasks, such as transportation, preparing
meals, doing laundry, or helping with children or adult family members that you care for. This
isn’t the time to try to do everything yourself. This is a good time to let go of some
responsibilities and let others help!
If you have young children, you may be interested in practical tips on how to help your children
cope. Raising an Emotionally Healthy Child When a Parent is Sick by Paula K. Rauch, MD, is
available online and in some bookstores.
More information and suggestions about being an empowered patient can be found at the following
 American Cancer Society at or call 1-800-2272345
 LIVESTRONG Foundation at or call 1-855-220-7777
 Cancer Care at or call 1-800-813-HOPE (4673)
 The Cancer Support Community at or call 1-888-7939355
 Caring Bridge at
 Information about managing pain and other symptoms and side effects is also found in NCCN
Guidelines for Patients:
 Your Employee Assistance Program (EAP)
 [List any other programs offered, such as a cancer support program offered by your health plan
or another vendor]
Questions for Your Doctor
1. What kind of cancer do I have?
2. What stage is my cancer? What does the stage mean for the treatment I’ll need and my prognosis
(how am I likely to do)?
What are my treatment options? What are the pros and cons of the different options?
Will this treatment make it difficult or impossible for me to have children (if this is relevant for you)?
If so, what can be done to give me the best chance of being able to have children after completing
Are there treatment options that will allow me to have a good quality of life, continue working and
participate in other activities that are important to me?
These activities are important for my work or personal satisfaction both during treatment and after
treatment ends. (Identify what is important for you to be successful in your work and what activities
you enjoy outside work.) Will the proposed treatment make it difficult or impossible for me to do
these activities? If so, are there other treatment options available? Will choosing a different
treatment change my outcome?
Should I consider being treated as part of a clinical trial?
What changes do I need to make in my life (work, activities, diet, etc.) because of my cancer and
cancer treatments?
What can I do to feel as well as possible during treatment and recovery?
Other resources for helping you prepare a list of questions to ask your doctor and/or others:
 American Cancer Society: (search on "Questions to Ask Your Doctor’)
 American Society of Clinical Oncology (ASCO): (search on "Questions
to Ask Your Doctor")
 National Comprehensive Cancer Network® (NCCN):
 WebMD: (search on "Questions to Ask Your Doctor")
Getting Help for Symptoms and Side Effects
The term “palliative care” is not always well understood. The goal of palliative care is to improve quality
of life and have an extra layer of support from a team of physicians, nurses and others committed to
focusing on your care whenever you have symptoms such as pain, shortness of breath, fatigue or
depression. Your quality of life can often be improved by involving a palliative care specialist, a doctor
who specializes in treatment of these and other symptoms.
Receiving palliative care is sometimes perceived as a sign that there is nothing more that can be done to
treat your cancer, but that is not the case. You can -- and should -- receive palliative care at the same
time as you receive treatment intended to cure your cancer or extend your life. In fact, recent studies
have shown that patients with cancer who receive palliative care live longer than other patients like
them who do not receive palliative care services.
If your cancer has advanced and cannot be cured, you should still receive aggressive care, but of a
different kind. The care should shift to controlling symptoms aggressively and maintaining quality of life.
If it appears that your treatment is no longer controlling your cancer, it’s important to know about all
available options so that you can make decisions that are right for you.
The first step is to have a conversation with your doctor about hospice. If your physician hasn't broached
the subject, you can bring it up. At this point, when time has become limited, knowing what hospice is
and what a hospice program can do to help you and your family is important. In particular, being
knowledgeable about hospice before you need it and before
“Palliative care is specialized medical
you’re ready to enroll will give you a chance to think
care for people with serious illnesses.
through all your options and to discuss them with your loved
This type of care is focused on
providing patients with relief from
Hospice usually is not a place you go to. Rather, hospice
the symptoms, pain, and stress of a
provides specially trained nurses and others who can help
serious illness -- whatever the
you stay in your own home as long as possible. If you have a
diagnosis. The goal is to improve
limited life expectancy, you can enroll in hospice when your
quality of life for both the patient and
doctor certifies that you have an estimated 6 months or less
the family. Palliative care is provided
to live (in some cases, 12 months or less to live). The hospice
by a team of doctors, nurses, and
team typically includes a doctor, a nurse, a home health
other specialists who work with a
aide, a social worker, a chaplain and a volunteer. They will
patient's other doctors to provide an
come to your home to keep your pain and other symptoms
extra layer of support. Palliative care
under control and help you to have a good quality of life.
is appropriate at any age and at any
stage in a serious illness, and can be
Hospice doesn’t mean that you give up hope. It doesn’t
provided together with curative
mean that you will be abandoned by the doctors who have
been caring for you. The doctor who has been treating your
--Diane Meier, MD, Director, Center
cancer can still be involved in your care. The goal of hospice
to Advance Palliative Care (2011)
is to help you to have as good a quality of life as possible. A
team of care providers will focus on you and your family’s
unique needs for care and support. Recent studies have
shown that patients with cancer who receive palliative care
and hospice services live longer than other patients at this stage who do not receive these services.
Hospice care can be provided wherever you call home -- your house or a loved one’s residence, a
nursing home or an assisted living facility. Hospice services are available on call 24 hours a day, seven
days a week, but around the clock care usually is not provided. In some communities, however,
residential hospice programs are available, and they do provide around-the-clock care. Check your
health plan to find out what type of hospice program (in home and/or residential) it covers and what the
eligibility requirements are. For more information about hospice, talk to your doctor, ask for a hospice
consultation and look at some of the resources listed below.
American Cancer Society:
Hospice Foundation of America:
National Cancer Institute:
National Hospice and Palliative Care Organization:
Planning Ahead
Although many cancers can be successfully treated, it is always a good idea to start planning ahead. This
is important for everyone – whether they have cancer or not. Planning provides comfort in knowing
that you have thought about and documented your choices and wishes in case you become
incapacitated and are unable to speak for yourself. By doing this, you have made it easier for your loved
ones to honor your wishes.
Part of planning ahead is designating one or more individuals (your “health care agent” or “proxy”) who
can speak on your behalf if you can no longer speak for yourself. This is done by creating an advance
health care directive (advance directive, or “living will”) and/or a durable power of attorney for health
care and talking about your wishes with your doctor and your loved ones. It’s important to review these
forms from time to time and make changes if your circumstances or preferences change.
Advance Directive
An advance directive spells out the kind of medical treatment you would or would not want if you were
incapacitated or terminally ill and were unable to speak for yourself. This is helpful for the doctors
treating you; if they know what your wishes are, they can honor them. An advance directive is also
valuable because it spells out for your family members what care you want and don’t want. This will
reduce the chances that your loved ones will disagree or not know how to act if you can’t speak for
The accepted format of an advance directive depends on the state where you live. You can obtain a
form that is valid in your state from your clinic or hospital. It's not necessary to have a lawyer involved,
although you may do so if you wish. Some states require that a notary public sign the form, while other
states only require witnesses – who can be anyone you choose. If a notary public is required in your
state, there may be someone available at your clinic or hospital.
An advance directive form that is easy to complete, provides helpful guidance and is valid in most states
can be obtained at Five Wishes (click on the Five Wishes links for information, to download or order a
copy of the form). Another resource to help with this process can be found on the website, The
Conversation Project. This site includes resources to help you talk about your wishes for end-of-life care.
It's designed to make the process easier by helping you pull together your thoughts and introduce the
subject to your loved ones.
Durable Power of Attorney and Wills
You may also want to see a lawyer and create a durable power of attorney and a will. Your EAP may be
able to provide a referral for a legal consultation that is free or at a discount. [Link to information if
employer offers assistance through the EAP or other resource to prepare a will.] By designating
someone as your proxy decision-maker by means of a durable power of attorney form, you'll l be able to
specify whom you want to be responsible for making decisions on your behalf in case you're
incapacitated. This individual, called an “attorney-in-fact” or “proxy,” can speak for you on a range of
health care decisions, not just decisions regarding life-prolonging treatment.
A regular durable power of attorney form typically covers only financial matters. The designation of a
power of attorney on health care and financial issues can be combined into one document.
Once you complete your advance directive and/or durable power of attorney form, be sure that the
person (or persons) you’ve designated as your health care agent has a copy of the form. You should also
discuss your wishes with your doctors and make sure they have a copy of the advance directive in your
medical records.
A will can include as much information as you wish to specify about how you want your assets
distributed upon your death. You will need to specify someone to be the executor of your estate -- the
person who will implement your wishes after your death. Having these forms in place will greatly
simplify the process for your heirs (your spouse, partner, children or others) in the event of your death.
This is a good time to put your financial house in order as well. As a result of your diagnosis and
treatment, your personal and household finances may have taken a hit. Your EAP may be able to help by
connecting you with a financial advisor.
Aging with Dignity at (search for “advance directive”)
AARP at (search for “advance directive”)
Help Guide at (search for “advance directive”)
Caring Connections at (click on the “Planning Ahead” link)
Recovery and Survivorship
All cancer patients look forward to the day when their treatment is complete. The end of active
treatment means the start of a new phase of life as a cancer survivor. As a cancer survivor, you have
special concerns, many related to the treatments you’ve received. By working with your doctors to
develop a Survivorship Care Plan, you can be prepared to deal with both physical and emotional issues
that many people experience. The care plan will ensure that you get the follow-up care you need and
help you lead a healthy, productive life.
The care plan should include recommendations for future cancer screenings and other follow-up care. It
should also include information on prevention and healthy living – what you can do to make the most of
your life going forward.
The Survivorship Care Plan should also include a cancer treatment summary, important information that
you, your primary care doctor and other doctors will need to know. Ask the doctor who provided most
of your cancer treatment to give you this summary, which you should share with your primary care
doctor and other doctors you see. The summary will help you coordinate your care between your
primary care doctor and other specialists to ensure that your needs are being met. To make it easy to
find this information, several cancer organizations have developed templates that list the information
you’re likely to need in the future.
The cancer treatment summary should include information such as:
 Names and contact information of the doctors who treated you for cancer;
 Background information about you, your risk factors and your cancer diagnosis;
 The treatments you received, dates of treatment, names of doctors who provided the different
treatments and their contact information;
 Information on follow-up care you should schedule in the future, and who should provide the
 Possible effects of your cancer and treatment history
Possible long-term or late effects include:3, 4
that you may experience months or years after
 Fatigue
treatment, including both physical and emotional
 Problems fighting infections
 Lymphedema, or swelling of arms or
 When to call your doctor and which doctor to call
(i.e., your oncologist or your primary care doctor);
 Memory loss or difficulty
 Things you should do to be as healthy as possible;
concentrating (sometimes referred to
as “chemo brain”)
 Support resources available to you; and
 Any special issues you may experience.
 Changes in sexual functioning
 Pain
 Numbness or tingling due to nerve
Physical Issues of Cancer Survivorship
Your need for care doesn’t end with active treatment of your
 Bone and joint problems
cancer. Your future health care needs will have changed as a
 Muscle weakness
result of your cancer treatments, and you may face new
 Lung or heart problems
challenges in the years ahead. Some--but not all--cancer
 Another cancer
 Sensitivity to sun exposure
survivors experience long-term or late physical effects of
their treatment. It can be difficult to predict if you will
experience late effects and when they might occur. Your experience will depend on the type of cancer
and treatments you had and other health conditions you may have. The effects may be mild or serious;
they may improve or eventually go away. Your doctors may be able to tell you which side effects you are
likely to experience, how to manage them and when to seek medical help.
Some individuals – such as many women with breast cancer -- will continue to receive ongoing
treatment. These individuals will receive drugs that may have side effects that will need to be monitored
over the long term. They also may experience some of the late effects listed in the text box.
Emotional Issues of Cancer Survivorship
Cancer survivors can experience a variety of emotions when treatment ends. There is the positive
feeling of having gotten through a difficult time and knowing you will no longer be going in for
treatment. You may have found strengths you didn’t know you had. You may have found new friends
and seen your relationships with family and friends grow. You may find yourself experiencing a renewed
enthusiasm for getting the most out of each day.
You may also have other, sometimes confusing feelings. Some cancer survivors suddenly feel lost,
abandoned and vulnerable now that they aren’t seeing the doctors and nurses who cared for them
during treatment. Friends and families may drift away once the critical treatment period is over. They
may not understand that you still have concerns about how cancer has changed your life. Life can return
to what used to be normal, but you don’t feel like the same person, and normal doesn’t feel the same
either. If you’ve taken leave from your job, returning to work can be difficult. You may have concerns
about the future and face the challenge of adjusting to the new normal.
Acknowledging your feelings and concerns is an important first step. Since you may not want to burden
your family, friends and co-workers, it can be very helpful to join a cancer survivors group that meets in
person or online. If you’re feeling anxious or depressed, you can consider seeing a counselor or
therapist. You can ask your doctor for a referral, contact your EAP or contact organizations that assist
cancer survivors with referrals to resources in your community.
For examples of a cancer treatment summary and Survivorship Care Plan, as well as information about
staying healthy after cancer treatment, go to these sources:
 American Society of Clinical Oncology at
 The Cancer Support Community at
 National Coalition for Cancer Survivorship at
 Journey Forward at
 LIVESTRONG Foundation at (search for "cancer survivorship").
 The LIVESTRONG Care Plan is a free online tool to help you develop a personalized plan for posttreatment care. You can use it to work with your oncologist and primary health care provider.
Go to:
Balancing Work and Your Health
The Meaning of Work
Work plays an important role in most people’s lives. Not only does it provide income and benefits, it also
is a way for people to use their talents, skills and knowledge.
With a cancer diagnosis, the role of work in your life is likely to change. This is a good time to think
about where work fits into your priorities. Work may become a lower priority as you and your family
shifts your focus to dealing with your illness. But even during these difficult times, don't underestimate
the value of work. For many people, work continues to be an important source of meaning, sense of
self-worth and social support. Remaining at work during cancer treatment, or returning to work after
treatment, can provide an important sense that life is normal. You’re not just a cancer patient, you’re
the same person you were before who happens to have cancer.
Whether you remain at work with only occasional absences, cut back your hours, work from home or
take a disability leave will depend on many things. You may even decide you don’t want to continue
working or return to work.
First, it’s important to know what your options are. [Information to be customized by the employer. If
employer doesn’t provide STD, this section can be deleted or modified].
For occasional absences, you may be able to take paid time off (PTO) [or sick leave or vacation -employer should customize this].
If you need a longer absence from work, you may qualify for short-term disability leave, which
can replace part or all of your salary [link to section describing the employer’s STD leave policy
and additional information, such as who to contact if want to request leave]. Your doctor will be
asked to provide information to your employer or the disability management company so they
can determine if you qualify for disability leave. They will also work with you to plan for your
eventual return to work.
If you find you’re unable to return to work after short-term disability leave, you may qualify for
long term disability [link to information] and/or Social Security disability [link to information].
If you need time off before qualifying for disability leave you can take Family Medical Leave. In
most states, you won’t receive your salary or wages when taking Family Medical leave, but this
mandated benefit allows you to keep your job and health insurance. [Employer should change
wording here if they have employees in states that require employees to be paid when on FML.]
[link to specific information].
If you’re able to return to work but find yourself unable to handle all of your usual
responsibilities, your employer may be able to provide workplace accommodations, such as
adjusting your hours, your responsibilities or your place of work. You should become familiar
with your rights and options under the Americans with Disabilities Act (ADA). Keep in mind that
taking disability leave may protect your job and be a better option than trying to continue
working and having your work performance or your health suffer.8
Talking with your Doctor about Working during Cancer Treatment
One of the topics you and your doctor should discuss is how your treatment will affect your ability to
continue working or taking part in other activities that are important to you. You may want to involve
your spouse, partner or others in these discussions.9
1) Tell your doctor what your job involves, including the mental, physical and emotional demands.
2) Let your doctor know if continuing to work is a priority for you.
3) If you need surgery that will require you to take time off to recover, how quickly can you expect
to recover? Can you return to work earlier if your employer will provide accommodations, such
as working fewer hours, working from home or modifying your duties?
4) How are you likely to be affected by your cancer, your treatments and medications? Will you
experience fatigue, difficulty concentrating, nausea or other side effects? How well can the side
effects be managed?
5) Will your treatments increase your risk of infections? Will it be safe for you to be around large
groups of people (such as when commuting or while at work)?
6) Are there effective treatment options that are likely to have fewer side effects?
7) Are there ways you can schedule treatments to minimize the time you need to be away from
8) If you are experiencing depression or anxiety, where can you go to get treatment?
Once you have a good idea of what treatments you’ll receive and what their impact is likely to be on
your ability to work, you should talk to your doctor about whether you want to continue working or take
time off. If you expect to take time off, you should talk with your supervisor, providing as much advance
notice as possible. Contact your company’s human resources department at [insert phone number]
about your situation and explain how it’s likely to affect your work schedule. It’s not necessary to
provide your supervisor or HR person with details about your diagnosis or treatment plan. What you do
need to discuss are options that may make it possible for you to continue working part- or full-time.
You may be required to provide documentation that you qualify for work accommodations under the
ADA.8 Your doctor will be asked to provide information to your employer or the disability management
company so they can best determine with you what work schedule and responsibilities are in your best
What to Say to Your Co-workers
What you say to your co-workers is a very personal decision. Not everyone feels comfortable talking
about their illness with their supervisor and co-workers. You are not required to tell anyone at work
about your diagnosis, except for specific individuals when requesting leave or workplace
Whether or not you tell others depends on your desire for privacy, your relationship with your
supervisor and co-workers and other considerations. Your right to privacy is protected by the federal law
known as HIPAA.
You may not be able to control your cancer, but you do have complete control over what you say, how
much you say and whom you tell. Some patients fear that co-workers will be uncomfortable talking
about cancer, or may treat them differently.1, 8 But some co-workers will be reassured when they are
told why you're absent from work or don’t seem to feel well. They may be more willing to take on
additional responsibilities when you have to be away from work or reduce your hours.
Your co-workers also may be able to provide support and assistance. Finding out that a co-worker has
cancer may remind them of a cancer experience in their own lives, or remind them of their own
mortality. They may have incorrect information about cancer and would be more comfortable and
accepting if they knew more. If you do share information, remember that it’s up to you to decide how
much to say. If co-workers ask intrusive questions, you can respond by saying that you’d rather not talk
about your cancer, your treatments or your prognosis at this time.
Returning to Work after Leave
When you decide to take medical leave, you have to consider your specific situation – the type of work
you do, the type of cancer you have, the treatments you’ll be receiving, the likely side effects and other
issues. Deciding when to return to work after taking leave is also a very personal decision. You may need
to return to work for financial reasons. You also may be anxious to return to work so you can get back to
your usual routine. It may be possible to arrange for a return-to-work trial to see if it feels right.
You should talk to your doctor about how you feel physically, emotionally and mentally, and how your
status affects your ability to return to work and perform your job well. You should talk about ways you
may be able to manage your fatigue or other symptoms. This may include taking medications and
returning to work on a gradual schedule. It also may include steps you can take, such as eating well,
exercising, taking rest breaks and getting help at work or at home. Be sure to talk to your doctor before
making major changes in your diet or beginning or resuming a vigorous exercise program.
There are many important reasons to return to work. But it’s also important to avoid returning to work
too soon, when you may experience symptoms that could make it difficult for you to do your job well.
Remember, the most important thing is for you to take care of yourself!
Your disability case manager and EAP professionals have resources to help you make these decisions.
They can also work with your supervisor to evaluate possible workplace accommodations, including
working shorter or different hours, change in duties, physical changes to your workplace or working
from home.
Where You Can Go if You Have Concerns
[Include a text box that lists who to contact for specific issues or questions.]
There may be times when you have questions or concerns about your short-term disability leave, returnto-work or work accommodations that are being considered or have been proposed. It’s important for
you to understand and be comfortable with decisions affecting you, your recovery and your work.
A short-term disability case manager will help you, your supervisor, and human resources staff members
ensure a smooth transition back to work. Disability and return-to-work decisions are based on medical
and treatment information provided by the doctors who are treating you. During your time off, your
disability case manager will follow the progress of your treatment and gather information from your
doctor. Once your doctor states that you have recovered sufficiently to return to work, you and your
supervisor will be notified about your date of return.
However, there are steps you can take if you aren’t comfortable with the disability or accommodations
decisions, or don’t agree with them.
Short-term Disability Decision
1. Make sure that the short-term disability case manager has the most recent, complete and
accurate information about your illness, how it's affecting you and the course of treatment your
doctors and treatment team are pursuing.
2. Discuss your situation with your disability case manager.
If these steps don’t resolve your concerns, you may want to make a formal appeal. The process for
making an appeal is described in your Short-Term Disability Summary Plan Description [link]. When
making a decision to file an appeal, you may want to seek guidance from your human resources
department, including labor relations/employee relations. [Link to employer’s information or other
relevant resources.]
Dealing with cancer and work disability involves major life changes. With cancer and other serious
illnesses, making the transition from disability to work involves changing your focus from illness and
treatment to returning to your normal activities. You may want to consider talking with your EAP
professional for support in making these changes.
Work Accommodation Decisions
The transition from disability to work may involve accommodations that take into account limitations
related to your illness. Decisions about a possible work accommodation will be made jointly by you, your
doctor, your employer and the disability case manager. The ADA states that an accommodation is any
modification or adjustment to a job or work environment that enables a qualified person with a
disability (whether temporary or permanent) to perform a job. Providing accommodations does not
1) Removing or eliminating an essential function from a job;
2) Lowering productivity standards; or
3) Providing personal use items such as a prosthetic limb, a wheelchair, eyeglasses, hearing aids or
similar devices if they are also needed away from your job.
Most accommodations are relatively simple and straightforward, with little or no extra expense incurred
by you or your employer. The accommodation may involve a flexible work schedule, working from home
or taking a rest period while at work. Other accommodations may require more creative approaches,
where you, your supervisor and representatives from HR make decisions based on your particular needs.
Before meeting with your supervisor, it’s recommended that you follow these steps:
1) Identify what accommodation(s) you need to perform your usual job activities;
2) Define approximately how long the accommodation(s) will be needed;
3) Review your organization’s policies and procedures about accommodations; and
4) Discuss your needs with a human resources staff member who has administrative responsibility
for the ADA, which includes accommodations.
To help guide you, the Department of Labor has established the Jobs Accommodations Network (JAN).
JAN provides both employers and employees with resources for structuring work accommodations.10 It
also provides guidance for developing accommodations by occupation and type of organization; for
example, manufacturing, service, etc.
You may also be eligible for Social Security Disability if you become permanently disabled. The definition
of disability under Social Security is different than it is for other programs. Social Security pays only for
total disability. No benefits are payable for partial disability or for short-term disability.
"Disability" under Social Security is based on your inability to work. You are considered disabled under
Social Security rules if:
You cannot do work that you did before;
The Social Security Administration decides that you cannot adjust to other work because of your
medical condition(s); and
Your disability has lasted or is expected to last for at least one year or to result in death.
This is a strict definition of disability. Social Security program rules assume that working families have
access to other resources to provide support during periods of short-term disabilities, including workers'
compensation, insurance, savings and investments.
The Social Security Compassionate Allowances program is available for individuals with many types of
cancer. This program offers a way to quickly identify diseases and other medical conditions that are very
likely to qualify based on medical information that can be obtained easily. This is not a separate program
from social security, but it may provide a faster way of qualifying for social security disability payments.
More information is available here.
 The Jobs Accommodations Network (JAN) at
 Cancer and Careers at
American Cancer Society at (Search for "Returning to work after cancer
Americans with Disabilities Act at
Department of Labor at benefitsclaim.html
Understanding Health Information Privacy at
Social Security Administration at
Support Resources
 American Cancer Society: (search for "survivorship") or call 1-800-2272345
 The Cancer Support Community at or call 1-888-7939355
 LIVESTRONG Foundation: (search for "cancer survivorship") or call
 Cancer Care at or call 800-813-HOPE (4673)
 Other cancer organizations, online or in your community
 Your Employee Assistance Program
National Comprehensive Cancer Network. What are clinical trials? NCCN Patient Guidelines:
Colon Cancer Guidelines.
Accessed May 29, 2013.
National Cancer Institute. Who is a caregiver? Accessed March 30,
National Coalition for Cancer Survivorship. Long-term and late effects.
Accessed May 30, 2013.
LIVESTRONG Foundation. Cancer survivorship after treatment. Accessed May 30, 2013.
Thiboldeaux K, Golant M. Reclaiming Your Life After Diagnosis. Washington, DC: Cancer Support
Community; 2012:13.
American Cancer Society. Find support and treatment.
Accessed May 29, 2013.
Cancer Support Community. Open to Options. Accessed July 19, 2012.
American Cancer Society. Working during cancer treatment.
duringandaftertreatment/working-during-cancer-treatment. Accessed May 29, 2013.
Cancer and Careers. Creating an action plan. Accessed May 29, 2013.
Job Accommodation Network. JAN for individuals.
Accessed September 12, 2012.