Living as an Adrenal Cancer Survivor

For some people with adrenal cancer, the end of treatment can be both stressful and exciting. You may be relieved to finish treatment, but it’s hard not to worry about cancer coming back. This is very common if you’ve had cancer.

But sometimes, the cancer never goes away completely. Some people may get chemotherapy or other treatments to try and help keep the cancer in check. Learning to live with cancer that does not go away can be difficult and very stressful.

Life after adrenal cancer means returning to some familiar things and making some new choices.

Follow-up care

Follow-up care will be very important after treatment for adrenal cancer. One reason for this is that the cancer can come back (recur), even after treatment for early-stage disease. Your doctor will want to see you frequently in the first months and years after treatment, but this might become less often as time goes on. This is a good time for you to talk to your cancer care team about any changes or problems you notice and ask any questions you have.

If you are still taking mitotane, you might need more frequent follow-up appointments to check for its levels in your blood   and if there are any side effects from this drug. Remember that mitotane will also suppress the usual steroid hormone production from your other, normal adrenal gland. As a result, you will need to take hormone replacement tablets to protect you against cortisol deficiency.

CT (computed tomography) scans may be done periodically to see if the cancer has returned or is continuing to grow. Your blood and urine hormone levels may be tested regularly to see how successful the drugs have been in suppressing hormone production by the cancer.

Ask your doctor for a survivorship care plan

Talk with your doctor about developing a survivorship care plan. This plan might include:

• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment
• A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
• Diet and physical activity suggestions
• Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care

Nutrition

Eating right can be hard for anyone and can get tougher during cancer treatment. The cancer, varying hormone levels, and your treatment can all affect how you eat and absorb nutrition. Nausea can be a problem during and after some treatments, and you may have lost your appetite and some weight.

If you have lost or are losing weight, or if you are having trouble eating, do the best you can. Eat what appeals to you. Eat what you can, when you can. You might find it helps to eat small portions every 2 to 3 hours until you feel better. Now is not the time to restrict your diet. Try to keep in mind that these problems usually improve over time. Your cancer team may refer you to a dietitian, an expert in nutrition who can give you ideas on how to handle some of the side effects of your treatment.

Keeping health insurance and copies of your medical records

Even after treatment, it’s very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.

At some point after your cancer treatment, you might find yourself seeing a new doctor who doesn’t know your medical history. It’s important to keep copies of your medical records or keep a patient app current on your smart phone to be able to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.

Can I lower my risk of adrenal cancer progressing or coming back?

If you have (or have had) adrenal cancer, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, since there are no known preventable risk factors for this cancer, it is not yet clear if there are things you can do that will keep the cancer from coming back.

Tobacco use has been suggested as a risk factor for adrenal cancer by some researchers, so not smoking might help reduce your risk. We don’t know for certain if this will help, but we do know that it can help improve your appetite and overall health. It can also reduce the chance of developing other types of cancer. If you want to quit smoking and need help, call the American Cancer Society at 1-800-227-2345. You can also learn more in our Guide to Quitting Smoking.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of cancer progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

If the cancer comes back

If the cancer does come back (recur) at some point, treatment options will depend on where it is, what treatments you’ve had before, and your overall health. For more information on how recurrent cancer is treated, see Treatment Choices, by Stage of Adrenal Cancer.

For more general information on recurrence, you might also want to see Understanding Recurrence.

Could I get a second cancer after treatment?

People who’ve had adrenal cancer can still get other cancers. In fact, adrenal cancer survivors are at higher risk for getting some other types of cancer. Learn more in Second Cancers After Adrenal Cancer