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Living with Uncertainty

While no one wants to think about it, every cancer survivor needs to be prepared for the chance that their cancer may come back some day. This is very hard to think about, especially right after successful cancer treatment. But not being aware of this possibility could be dangerous to your long-term health. There are some things you can do and things you should know that will help you deal with the uncertainty of cancer recurrence.

Keep your health insurance
You already know that having cancer is very expensive. Your first cancer experience probably cost a lot of money. You may have had to change your work schedule or job status because of the side effects of a certain treatment. Your partner may have had to take time off work to help you. These changes affect your finances.

Though money may be tight, keep your health insurance if at all possible after you have finished your first cancer treatment. You will need regular followup care for many years. Unless you are over 65 and can get Medicare, it can be hard to get medical insurance, especially if your cancer comes back. Insurance is expensive, but cancer treatment is even more costly. There are some options for uninsured people who need cancer treatment, but they are not easy to get or inexpensive. There are no “free” government programs to pay for cancer care.

For some people, going back to work after having had cancer is very hard to do, but they feel they cannot look for a different job because they are afraid to lose their health insurance. Although the Health Insurance Portability and Accountability Act (HIPAA) is supposed to help you to get insurance coverage when you change jobs, some people worry about the risk of having different coverage in a new job. Although employers are not legally allowed to discriminate against hiring people who have had cancer, cancer survivors are often afraid to look for a new job. They are also afraid to discuss their cancer with a new employer. For ideas on how to handle this, you may want to see our document, Off Treatment: Financial Guidance for Cancer Survivors and Their Families, which you can get by calling our toll free number (800) 227-2345. It also helps to know what rules the employer must follow. You may also want to read our documents about the Americans With Disabilities Act, HIPAA, and COBRA.

Keep your follow-up visits with your doctor
While there is no guarantee that seeing your doctor regularly will keep the cancer from coming back, it will help find any recurrence as early as possible. The earlier cancer is found, the easier it is to treat. It is also reassuring to know that your doctor is closely watching you to be sure there are no signs of cancer recurrence. Continue to talk with your health care team. Let them know how you are feeling and discuss any concerns you might have. One of the greatest benefits you will get from the follow-up visits with your doctor will be peace of mind.

Get the tests your doctor suggests
You will need to have some tests done as part of your follow-up after cancer treatment. These will help your doctor be sure that you stay in remission (without evidence of disease). The tests will vary depending on the type of cancer you had.

One of the greatest benefits you will get from the followup visits with your doctor will be peace of mind.

For example, if you have prostate cancer and were offered close follow-up but no immediate treatment (this is often called watchful waiting), follow-up tests may include a digital rectal exam (DRE) and PSA (prostate-specific antigen) test every 6 months. A needle biopsy of the prostate gland would likely be done within 6 months, be repeated within 18 months, and done any time after that if it looks like the cancer is growing.

The follow-up for certain early-stage bladder cancers after treatment includes a visit to your doctor every 3 months for the first year, then at regular intervals after that. During these visits, your doctor will likely do a cystoscopy (look at the inside of your bladder with a cystoscope – a slender tube with a lens and a light) and collect a urine sample to check for bladder cancer cells.

As you can see, each follow-up schedule is different based on the specific cancer. Talk to your health care team about what your follow-up care is going to be, what is expected of you, and what you can expect of them during this time.

It is tempting to avoid following all the steps and tests required in follow-up. By the time you have completed treatment for cancer, you may be tired of being a cancer patient – you may just want to forget about this part of your life and move on. It is understandable to want to avoid tests and doctors that make you face the possibility that your cancer has returned. This is a natural impulse, but not a wise choice.

Keep copies of your cancer treatment records and tests
As you complete your cancer treatment, talk with your doctors about getting copies of all your important cancer treatment information. Most hospitals and treatment facilities keep patient records only for a few years before destroying them. Even if your cancer doesn’t come back, your primary care doctor will need to know about your surgery, biopsies, chemo drugs, and radiation dose. And if you change doctors, it is important that you be able to give your new doctor the details of your diagnosis and treatment. Make sure you have this information handy:

• A copy of your pathology report(s) from any biopsies or surgeries
• A copy of your operative report(s) if you had surgery
• Copies of x-rays and scans (on a CD if you can get them in that format)
• A copy of the discharge summary that doctors prepare when patients are sent home, if you were hospitalized
• A copy of the treatment summary, if you had radiation therapy
• A list of your drugs, drug doses, and when you took them, if you had chemo or targeted therapy

The doctor may want copies of this information to add to your record, but always keep copies for yourself.

Talking with others who are in situations like yours can help ease loneliness. You can also get useful ideas from others that might help you.

Learning to live with uncertainty
Worrying about the cancer coming back (recurring) is normal, especially during the first year after treatment. This is one of the most common fears people have after cancer treatment. And even many years after treatment, this fear may still be in the back of your mind. As time goes by, many people say that their fear of cancer returning decreases and they find themselves thinking less often about their cancer. But even years after treatment, some events can make you worry about your health. These may include:
♦ Follow-up visits
♦ Anniversary events (like the date you were diagnosed, had surgery, or ended treatment)visits
♦ Birthdays u Illness of a family membervisits
♦ Symptoms much like the ones you had when you first found you had cancervisits
♦ The death of someone who had cancer

Here are some ideas that have helped others deal with uncertainty and fear and feel more hopeful:
♦ Be informed. Learn what you can do for your health now and about the services available to you. This can give you a greater sense of control.
♦ Be aware that you do not have control over some aspects of your cancer. It helps to accept this rather than fight it.
♦ Be aware of your fears, but don’t judge them. Practice letting them go. It is normal for these thoughts to enter your mind, but you do not have to keep them there. Some people picture them floating away, or being vaporized. Others turn them over to a higher power to handle. However you do it, letting them go can free you from wasting time and energy on needless worry.
♦ Express feelings of fear or uncertainty with a trusted friend or counselor. Being open and dealing with emotions helps many people feel less worried. People have found that when they express strong feelings, like fear, they are more able to let go of these feelings. Thinking and talking about your feelings can be hard. While it is important not to let cancer rule your life, it may be hard to do. If you find cancer is taking over your life, it may be helpful to find a way to express your feelings.
♦ Take in the present moment rather than thinking of an uncertain future or a difficult past. If you can find a way to feel peaceful inside yourself, even for a few minutes a day, you can start to recall that peace when other things are happening – when life is busy and confusing.
♦ Work toward having a positive attitude, which can help you feel better about life now.
♦ Use your energy to focus on wellness and what you can do now to stay as healthy as possible. Try to make healthy diet changes. If you are a smoker, this is a good time to quit.
♦ Find ways to help yourself relax.
♦ Be as physically active as you can.
♦ Control what you can. Some people say that putting their lives back in order makes them feel less fearful. Being involved in your health care, getting back to your normal life, and making changes in your lifestyle are among the things you can control. Even setting a daily schedule can give you more power. And while no one can control every thought, some say they’ve resolved not to dwell on the fearful ones.

Get support
Emotional support can be a powerful tool for both survivors and families. Talking with others who are in situations like yours can help ease loneliness. You can also get useful ideas from others that might help you.

There are many kinds of support programs, including individual or group counseling and support groups. Some groups are formal and focus on learning about cancer or dealing with feelings. Others are informal and social. Some groups are made up of only people with cancer or only caregivers, while others include spouses, family members, or friends. Other groups focus on certain types of cancer or stages of disease. The length of time groups meet can range from a set number of weeks to an ongoing program. Some programs have closed membership and others are open to new, drop-in members.

It is very important that you gather information about any support group you are considering. Ask the group leader or facilitator what types of patients are in the group and if anyone in the group is dealing with fears about recurrence or survival.

Online support groups may be another option for support. The Cancer Survivors Network, an online support community supported by your American Cancer Society is just one example. You can visit this community at csn.cancer.org. There are many other good communities on the Internet that you can join as well.

Some people feel better having a person-to-person connection with a counselor who can give one-on-one attention and encouragement. Your doctor may be able to recommend a counselor who works with cancer survivors.

Religion can be a source of strength for some people. Some find new faith during a cancer experience. Others find that cancer strengthens their existing faith or their faith provides newfound strength. If you are a religious person, a minister, rabbi, other leader of your faith, or a trained pastoral counselor can help you identify your spiritual needs and find spiritual support. Some members of the clergy are specially trained to help minister to people with cancer and their families.

Spirituality is important to many people, even those who don’t practice a formal religion. Many people are comforted by recognizing that they are part of something greater than themselves, which helps them find meaning in life. Meditation, prayer, practicing gratitude, and spending time in nature are just a few of the many ways that people address spiritual needs.

Support in any form allows you to express your feelings and develop coping skills. Studies have found that people who take part in a support group have an improved quality of life, including better sleep and appetite. You can contact your American Cancer Society to find out about available sources of support in your area.

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