Living With Uncertainty: The Fear of Cancer Recurrence

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Preparing for recurrence

While no one wants to think about it, every cancer survivor needs to be prepared for the possibility 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. Here are some things you can do and things you should know that will help you deal with the uncertainty of cancer recurrence. You don’t have to think about them every day, but knowing about them can help you if cancer does show up again.

Keep your health insurance

You already know that having cancer is very expensive. Your cancer tests and treatment probably cost a lot of money. You might have had to change your work schedule or job status because of the side effects of certain treatments. 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 follow-up care for many years. Unless you are over 65 and can get Medicare, it can be hard to get medical insurance, especially if the cancer comes back. Insurance costs a lot, 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 and they’re expensive. There are no “free” government programs to pay for cancer care.

For some people, going back to work after 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 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 Financial Guidance for Cancer Survivors and Their Families: Off Treatment, which you can read online or get by calling our toll-free number. It also helps to know what rules the employer must follow. You may want to read our documents about the Americans With Disabilities Act, HIPAA, and COBRA. They are listed in the “To learn more” section.

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’s also reassuring to know that your doctor is watching you closely 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.

For example, if you have prostate cancer treated with surgery or radiation therapy, follow-up tests might include a digital rectal exam (DRE) and prostate-specific antigen (PSA) test every 6 months for the first 5 years. Testing is often done at least yearly after that, and extra tests would be done any time it looked like the cancer might be 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 type of cancer. Talk to your healthcare 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’s 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’s 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’s 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

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

Last Medical Review: 06/19/2013
Last Revised: 06/19/2013