For some people with adrenal cancer, treatment may remove or destroy the cancer. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about cancer coming back. (When cancer comes back after treatment, it’s called recurrence.) This is a very common concern in people who have had cancer.
It may take a while before your fears lessen. But it may help to know that many cancer survivors have learned to live with this uncertainty and are leading full lives. Our document, Living With Uncertainty: The Fear of Cancer Recurrence, gives more detailed information on this. It can be read online, or call us to have a free copy sent to you.
For other people, the cancer may never go away completely. These people may get regular treatments with chemotherapy, radiation therapy, or other therapies to try to help keep the cancer in check. Learning to live with cancer that does not go away can be difficult and very stressful. It has its own type of uncertainty. Our document, When Cancer Doesn’t Go Away, talks more about this (see the section called “Additional resources for adrenal cancer” for a list of some other documents you may find helpful).
When treatment ends, your doctors will still want to watch you closely. It is very important to go to all of your follow-up appointments. During these visits, your doctors will ask questions about any problems you might have and do exams and lab tests or x-rays and scans to look for signs of cancer or treatment side effects. Almost any cancer treatment can have side effects. Some may last for a few weeks to months, but others can last the rest of your life. This is the time for you to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.
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. You should see your doctor frequently after treatment and less often later on. If you are taking mitotane, your follow-up appointments may need to be more frequent to see if the mitotane levels in your blood are in a good range and if there are any side-effects from this drug. Remember that mitotane will also suppress the usual adrenal 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 scans may be done periodically to see if the cancer has returned or is continuing to grow. Periodic tests of your blood and urine hormone levels will be done to evaluate the success of drugs in suppressing hormone production by the cancer.
It is 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.
Should your cancer come back, our document When Your Cancer Comes Back: Cancer Recurrence can give you information on how to manage and cope with this phase of your treatment. You can get this document by calling 1-800-227-2345, or you can read it online.
Seeing a new doctor
At some point after your cancer diagnosis and treatment, you may find yourself seeing a new doctor who does not know anything about your medical history. It is important that you be able to give your new doctor the details of your diagnosis and treatment. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. Make sure you have the following information handy:
- A copy of your pathology report(s) from any biopsies or surgeries
- If you had surgery, a copy of your operative report(s)
- If you stayed in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home
- If you received radiation, a copy of your treatment summary
- If you had chemotherapy (including mitotane) or other drugs, a list of your drugs, drug doses, and when you took them
- Copies of your x-rays and scans (these often can be placed on a DVD)
The doctor may want copies of this information for his records, but always keep copies for yourself.
Last Revised: 02/25/2015