“Now What?”

Life After Cancer Treatment

The Cancer Resource Center of the Finger Lakes

612 West State Street ● Ithaca, NY 14850

607-277-0960 ● www.crcfl.net

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Introduction

Your cancer treatment is now over. You probably aren’t sure if you should celebrate or worry. If

you feel unsettled, you aren’t alone. This booklet is designed to help you understand what to

expect and to help you make the transition from treatment to “life after treatment.”

What is a survivor?

For the purposes of this booklet, a cancer survivor is defined as anyone who has ever been

diagnosed with cancer. Once you’ve been diagnosed, you’re a survivor for the rest of your life.

Many people aren’t quite comfortable with the term “survivor,” but it’s difficult to find a

generally accepted term to take its place. Until we do, we’ll use survivor to refer to anyone

who’s had cancer.

Know that you aren’t alone. There are an estimated 12 million cancer survivors in the United

States and some 3,000 just in Tompkins County.

“Oh, my friend, it's not what they take away from you that

counts - it's what you do with what you have left.”

Hubert Humphrey

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What is “normal?”

Many cancer survivors use the months following treatment to “get back to normal.” But

sometimes what’s normal is now different from what it used to be because of your cancer and its

treatment. It may take some months for your body to fully recover and to understand what’s your

new normal.

Ring the bells that still can ring.

Forget your perfect offering.

There is a crack in everything.

That’s how the light gets in.

Leonard Cohen

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Changes that May Occur as a Result of Cancer and its Treatment

Although treatment is over, you may experience lasting physical effects. Everyone goes through

different physical changes after treatment, but the most common ones are explained below. Be

sure to report any of these physical problems to your physician.

Fatigue

The most common complaint during the first year after treatment is fatigue. It is normal

to feel tired for some months after treatment. Typically, survivors become less tired and

begin to build up strength gradually. Light exercise is generally more helpful than either

no exercise or too much exercise.

Chemobrain

One in four people with cancer report experiencing memory and attention problems after

chemotherapy. This is sometimes called "chemobrain.” In most cases, chemobrain

improves with time.

Neuropathy

Surgery and/or chemotherapy sometimes damage nerves, resulting in numbness and

tingling. These feelings often go away when treatment ends, but sometimes persist

indefinitely.

Changes in Weight and Eating Habits

Many cancer survivors lose or gain weight as a result of treatment. You may have

difficulties chewing, swallowing, or a lack of appetite. This is especially true for people

with head and neck cancers, or cancers of the gastrointestinal system. Nutritionists can

help you design a diet that’s right for you. Contact your doctor or the Cancer Resource

Center for suggestions.

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Sexual problems

If you experience sexual problems after your cancer treatment, you're not alone. Many

people have low desire for sex or feel anxious about how sex will feel after they've been

treated for cancer. It's important to be honest with your partner about your feelings.

Certain side effects of treatment can make sexual activity difficult. For example, some

cancer drugs can cause vaginal dryness in women, even after they stop taking the drugs.

Some men experience impotence after surgery for prostate cancer. Your doctor can

suggest ways of dealing with these side effects.

Depression and Anxiety

After treatment, you may still feel angry, tense, or sad. Another common feeling is a sense of

vulnerability. Usually these feelings will go away or lessen over time. For some people though,

these emotions can become more severe after treatment has ended.

It’s common for people to say that they didn’t have time to deal with their emotions when they

were in the middle of treatment. Once treatment is over, those emotions can bubble over.

Depression and anxiety are common in people who have had cancer.

Doctors don’t always think to ask if you’re depressed or anxious, but

please report these symptoms whether they ask you or not. Effective

treatment is generally available. And sometimes it’s a medication that’s

causing the depression. Talking with your doctor is the first step to

feeling better.

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Not everyone with depression is tearful. Sometimes people describe it as having no energy. Here

are other common signs of depression:

sleeping and/or eating too much or too little

low energy

feeling irritable

mood swings

crying a lot

having trouble concentrating

withdrawing from friends and family

feeling hopeless

feeling guilty

feeling angry

not being interested in things you used to enjoy

Depression and anxiety often go hand-in-hand because they’re related to similar brain chemicals.

Depression can make anxiety worse – and anxiety can make depression worse – so think of them

as two sides of the same coin.

“The days of our lives, for all of us, are numbered. We know that. And

yes, there are certainly times when we aren't able to muster as much

strength and patience as we would like. It's called being human.”

Elizabeth Edwards

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The After-Treatment Blahs

Bob Riter

For many people the months following cancer treatment are more difficult than the treatment

itself.

During treatment, your "job" is to be in treatment. You're busy with appointments and you see

the same doctors and nurses almost every week. At the same time, friends bring you meals,

family members take on extra duties, and you're left to focus on getting better.

Then you have your last radiation therapy treatment or chemotherapy session. You get hugs and

congratulatory handshakes. There's an expectation that everything in your life will suddenly

revert back to normal.

Let me pop that bubble: everything doesn't return to normal right away. You might even wonder,

"Is my new normal the same as my old normal?" Your body is tired. Your brain is muddled.

You're worried that the cancer will come back. And you miss the safe cocoon of your chemo

nurses and radiation therapists.

What makes it especially hard is that the people around you sometimes expect you to bounce

back almost immediately. While they were happy to help you during treatment, they now see you

as recovered and expect you to carry your old load. "C'mon, Bob. You finished chemo on Friday.

We need you at linebacker against the Giants on Sunday." (Maybe I'm fantasizing just a little,

but, hey, it's my column).

The post-treatment blahs are so common that I try to prepare people for them in advance. This is

what I suggest:

Expect a post-treatment slump. Rather than being a time of celebration, the last treatment

is sometimes the beginning of a funk. If you expect that funk, it won't be so difficult.

Realize that recovery is not a straight line. You'll feel better one day but worse the next.

That's normal.

Expect recovery to take several months. Some people say that the recovery phase takes as

long as the treatment phase. It took me a full year following chemotherapy to really feel

like myself again.

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Expect to be acutely aware of every ache and pain and immediately think the worst.

Every headache is an ominous sign of a brain tumor instead of just a normal headache.

Every cough is a lung metastasis instead of a normal cold. These worries become even

more pronounced before doctor visits and tests. You scan your body for the slightest

indication of anything bad. Everyone goes through this.

Realize that cancer will continue to be front and center in your life for several more

months. It's what you think about in the morning, at night, and throughout the day. But

this fades with time. The second year after treatment is much easier than the first year

after treatment.

Expect your family and friends to have less time to sit with you and listen to your

concerns about living with cancer. They're eager to get back to normal as quickly as

possible. There's a good chance that you still want to process what you've been through.

Joining a support group or speaking with a therapist can be especially helpful during this

transition phase.

Most of all, be patient with those around you and especially with yourself.

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Reducing the risk of a recurrence

Nearly everyone who’s had cancer worries that it will return. Depending on the type of cancer,

there are various ways to lower the risk of recurrence.

1) Exercise. Regular exercise may reduce the risk of cancer recurrence. Cancer survivors are

encouraged to do at least 30 minutes of exercise five times per week. Survivors who

follow an exercise program tend to feel stronger,

experience less fatigue and anxiety, and have

stronger immune systems. Exercise also lowers

different chemicals and hormones in our bodies,

which may have a protective effect against breast,

colon, uterine, lung, prostate, and other cancers.

The Cancer Resource Center often sponsors water

exercise and other wellness programs. Call (277-

0960) or visit our website (www.crcfl.net) for the

latest schedule.

2) Eat a healthy diet.

Research suggests that eating a diet that is largely

plant-based is good for your body and reduces your risk of recurrence. The American

Institute for Cancer Research has an excellent website on the connection between

nutrition and cancer. http://www.aicr.org/

3) Maintain a healthy weight.

Excess weight is a risk factor because fat produces hormones that, in turn, increase

the risk of some cancers, e.g., breast cancer. Talk with your physician or nutritionist

about what’s a healthy weight for you and how to reach and maintain that weight.

4) Don’t smoke and drink only in moderation if you choose to drink.

“Cancer is a word, not a sentence.”

John Diamond

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Relationships

Friends and Family

When treatment ends, you may feel like your family and friends aren’t as attentive as they used

to be. This is common – they probably want to return to normal and not think about cancer now

that your treatment is over. It’s a slower process for the person with cancer. This is often a good

time to join a support group to connect with others who understand what you’re going through.

Coworkers

The response of co-workers or people at school after your cancer

treatment will vary. Some may be a real source of support, while others

may avoid you. Many people mean well, but are unsure how to offer

support and will take their cues from you. Others are just freaked out

because of their own fears about cancer.

If you find yourself hurt by a coworker's words or actions, assume that

they didn’t know better and try to talk with them to resolve the problem. If the coworker

continues to make hurtful remarks or if attitudes get in the way of doing your job, you should

seek help from your manager or human resources office.

Sometimes what’s normal now is different from

what normal used to be. But people are resilient – we adapt

and we move forward.

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Frequently Asked Questions

How long will it take to feel normal again?

This varies so much from person to person, but it’s probably longer than you expect. Some

people say that recovery takes as long as treatment. That is, if you had four months of treatment,

you should expect at least four months of recovery before feeling like yourself again. It’s not

unusual to need an entire year before feeling 100%. And keep in mind that recovery is not a

straight line – you’ll have setbacks even when you’re gradually getting better.

My daughter wants me to join a cancer support group. I don’t want to. Should I?

It’s definitely your choice and what’s right for your daughter isn’t necessarily right for you. But

we have found that survivors often benefit from connecting with others who have had cancer.

And keep in mind that trying a group doesn’t commit you to staying in the group.

Which doctor is now in charge of my care?

This differs for different types of cancer and situations. It might be your medical oncologist, your

primary care doctor, or some other physician (e.g., a urologist). And it can change over time. Ask

your doctors this question so you’ll know which doctor to call when there are concerns, and

which doctors will order follow-up tests (e.g., mammograms or PSA tests).

Will I always worry about the possibility of a recurrence?

The first year after the end of treatment is difficult. You worry about every ache and pain and

wonder if it’s the cancer coming back. Those fears gradually fade with the passage of time, but

they tend to reappear when you have check-ups and tests. That’s to be expected.

I’m stressed and worried that my stress will increase my risk for a recurrence. Is this a

reasonable fear?

Studies looking at stress and the risk of cancer have been inconclusive, but stress can clearly

affect your general well-being and quality of life (not to mention the quality of life of those

around you). Exercise, yoga, meditation, and participation in support groups are popular

methods of reducing stress.

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Should I take supplements and vitamins?

Check with your doctor first. In general, it’s better (and safer) to get nutrition from food rather

than from supplements. And some supplements may interfere with your treatment or recovery.

Overall nutrition should be the goal. A few people need specific vitamins and supplements, but

nearly everyone would benefit from switching to a healthier and more plant-based diet.

How do I help make my loved ones understand that I can’t just flip a switch and put my

cancer behind me?

This is a common feeling. Recovering from cancer and cancer treatment generally takes months,

but your loved ones may expect you to bounce back immediately. That just isn’t going to

happen. Even knowing whether to say “I had cancer” or “I have cancer” can stump you. Your

family can help by being patient with you and reading booklets like this so they’ll better

understand your feelings. And you can help by finding a source of emotional support outside of

your family – join a support group and/or connect with a therapist. You need to talk about your

cancer, but your family probably needs a break from cancer.

I have a friend who said that cancer was the best thing that ever happened to her and she’s

now happily engaged in countless cancer-related walks and fundraisers. I had cancer too,

but I thought it was just awful and my wish is to never think about it again. Who’s right?

You both are. Most of us struggle to make sense of cancer and figure out what role it should play

in our lives as we move forward, but there’s no single path that’s right for everyone. Do what’s

right for you – and remember that what you decide today might be different from what you’ll

decide next year.

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Common Questions Regarding Follow-up Care

(From the National Cancer Institute)

1. What is follow-up cancer care, and why is it important?

Follow-up cancer care involves regular medical checkups that include a review of a patient’s

medical history and a physical exam. Follow-up care may include imaging procedures

(methods of producing pictures of areas inside the body), endoscopy (the use of a thin,

lighted tube to examine the inside of the body), blood work, and other lab tests.

Follow-up care is important because its purpose is to check for recurrence (the return of

cancer in the primary site) or metastasis (the spread of cancer to another part of the body).

The visits are important to help in the prevention or early detection of other types of cancer,

address ongoing problems due to cancer or its treatment, and to check for physical and

psychosocial effects that may develop months to years after treatment ends. All cancer

survivors should have follow-up care.

2. What should patients tell their doctor during follow-up visits?

During each visit, patients should tell their doctor about:

Any symptoms that they think may be a sign that their cancer has returned.

Any pain that bothers them.

Any physical problems that interfere with daily life or are bothersome, such as fatigue;

difficulty with bladder, bowel, or sexual function; difficulty concentrating; memory

changes; trouble sleeping; and weight gain or loss.

Any medicines, vitamins, or herbs they are taking and any other treatments they are

using.

Any emotional problems they are experiencing, such as anxiety or depression.

Any changes in their family medical history, including any new cancers.

Many times, recurrences are suspected or found by patients themselves between scheduled

checkups. It is important for patients to be aware of changes in their health and report any

problems to their doctor. The doctor can determine whether the problems are related to the

cancer, the treatment the patient received, or an unrelated health issue.

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3. How are follow-up care schedules planned?

The frequency and nature of follow-up care is based on the type of cancer, the type of

treatment received, and the person’s overall health, including possible treatment-related

problems. In general, people return to the doctor for follow-up appointments every 3 to 4

months during the first 2 to 3 years after treatment, and once or twice a year after that.

4. What should patients talk to their doctor about once cancer treatment ends?

Every cancer survivor should request a comprehensive care summary and follow-up plan

from their doctor once they complete their treatment. Patients should ask their doctor the

following questions once cancer treatment ends. The answers can help inform the patient

about their care and what to expect next.

What treatments and drugs have I been given?

How often should I have a routine visit?

Which doctor should I see for my follow-up cancer care?

What are the chances that my cancer will come back or that I will get another type of

cancer?

What follow-up tests, if any, should I have?

How often will I need these tests?

What symptoms should I watch for?

If I develop any of these symptoms, whom should I call?

What are the common long-term and late effects of the treatment I received?

What should I do to maintain my health and well-being?

Will I have trouble getting health insurance or keeping a job because of my cancer?

Are there support groups I can turn to?

Many patients find it helpful to write these questions down and take notes or tape record their

discussions with the doctor to refer to at a later time. And take a family member or friend

with you to take notes.

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Local Resources

The Cancer Resource Center, located at 612 W. State Street in Ithaca, was created by and for

people affected by cancer. Please come by for a cup of coffee, meet with volunteers and staff,

take a look at the well-stocked library, and join a group or activity. Finding community is an

essential part of our healing.

Area Support Groups

Note: These groups sometimes change meeting times and frequency. Please call the Cancer

Resource Center (607-277-0960) for the latest information. Or check the website:

www.crcfl.net.

Brown Bag Lunch for Women

Noon gathering for women with any type of cancer at any stage of treatment or recovery. Meets

every Friday from Noon - 1:30 at the Cancer Resource Center (612 W. State St).

Men's Breakfast Club

For men with any type of cancer, and at any stage of treatment or recovery are welcome. Meets

every Friday. 8 - 9 am at Royal Court Restaurant, 529 S. Meadow St. (across from Wegmans).

The first time you attend, we’ll buy your breakfast.

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Living with Cancer as a Chronic Disease

For people with more advanced cancers or at a high risk of recurrence. There are two monthly

meetings - both from Noon - 1:30 at the Cancer Resource Center. The meeting on the first

Thursday of the month is for people with cancer and/or their caregivers. The meeting on the third

Thursday is just for those with cancer.

Tompkins Prostate Support Group

Meets the third Wednesday of each month from 5:00 - 6:30 pm at the Cancer Resource Center

(612 W. State St). Men with prostate cancer and their loved ones are welcome. For more

information, call Brian Wilbur (607) 277-2404.

Young Adult Group

For people 20-40ish with cancer. Partners welcome. Meets the second and fourth Tuesdays of

each month from 5:30 - 6:30 at the Cancer Resource Center.

The Book Club

Meets the fourth Friday of each month from 1:30pm - 2:30pm at the Cancer Resource Center. A

book is discussed each month on a topic related to cancer, health, or other interests. You can

come even if you haven’t read the book!

Cornell Support Group (sponsored by Cornell's Wellness Program)

For caregivers, cancer patients, and survivors. Contact Beth at bm20@cornell.edu for more

information.

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Legal, Insurance, and Disability Issues

Workforce New York's Disability Program Navigator (607-272-7570) is an excellent

resource for help with programs like Medicare, Medicaid, and Social Security Disability

Insurance.

The New York State Attorney General's Office has a Health Care Bureau that helps

consumers with insurance and other problems (800-428-9071).

The Health Insurance Information, Counseling, and Assistance Program (HIICAP) of

Lifelong (607-273-1511) provides help with Medicare, Medigap, long-term care insurance, and

other programs serving seniors.

Cancer Legal Advocacy and Services Project, a project of Legal Services of Central New

York, provides legal assistance to individuals and their families living with cancer in Central

New York (including Tompkins County). For assistance, call (315) 703-6500.

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National Resources

National Association for Cancer Survivorship

http://www.canceradvocacy.org/ -or- (877) 622-7937

The Cancer Survival Toolbox is a free, self-learning audio program that has been developed by

leading cancer organizations to help people develop important skills to better meet and

understand the challenges of their illness.

Centers for Disease Control: Cancer Survivorship http://www.cdc.gov/cancer/survivorship/

National Cancer Institute: Office of Cancer Survivorship

http://cancercontrol.cancer.gov/ocs/index.html

LiveStrong (Lance Armstrong Foundation)

http://www.livestrong.org/ -or – (877) 236-8820

American Cancer Society: Survivorship During and After Treatment

http://www.cancer.org/Treatment/SurvivorshipDuringandAfterTreatment/index

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If you don't see what you're looking for, call our office at (607) 277-0960

or email us at info@crcfl.net and we'll be happy to assist you.