For some people with a gastrointestinal stromal tumor (GIST), 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 growing or coming back. (When cancer comes back after treatment, it is 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 living full lives. Our document, Living With Uncertainty: The Fear of Cancer Recurrence, gives more detailed information on this.
For other people, the GIST may never go away completely. These people may get regular treatments with targeted therapy or other therapies to help keep the cancer in check. Learning to live with cancer as a more of a chronic disease can be difficult and very stressful. It has its own type of uncertainty.
Follow-up care
Whether you have completed treatment or are still being treated, your doctors will still want to watch you closely. It is very important to go to all follow-up appointments. During these visits, your doctors will ask about symptoms, do physical exams, and may order blood tests or imaging tests like CT scans. Follow-up is needed to check for cancer recurrence or spread, as well as possible side effects of certain treatments. This is the time for you to ask your health care team any questions you need answered and to discuss any concerns you might have.
Almost any cancer treatment can have side effects. Some may last for a few weeks to several months, but others can last the rest of your life. Don't hesitate to tell your cancer care team about any symptoms or side effects that bother you so they can help you manage them.
If cancer does recur, treatment will depend on the location of the cancer and what treatments you've had before. For more information on how recurrent cancer is treated, see the section, "Treatment choices based on tumor spread." For more general information on dealing with a recurrence, you may also want to see the document called When Your Cancer Comes Back: Cancer Recurrence. You can get this document by calling us at 1-800-227-2345.
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. Make sure you have this information handy:
- A copy of your pathology report(s) from any biopsies or surgeries
- Copies of imaging tests (CT or MRI scans, etc.), which can usually be stored on a CD, DVD, etc.
- If you had surgery, a copy of your operative report(s)
- If you were in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home
- If you had targeted therapy or chemotherapy, a list of the drugs, drug doses, and when you took them
- If you had radiation therapy, a summary of the type and dose of radiation and when and where it was given
It is also 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.
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