What happens after treatment for gastrointestinal carcinoid tumors?
For some people with gastrointestinal (GI) carcinoid tumor, 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 is called a 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 accept this uncertainty and are living full lives. Living With Uncertainty: The Fear of Cancer Recurrence gives more detailed information on this.
For other people, the cancer may never go away completely. These people may stay on drug therapy or 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. Read When Cancer Doesn't Go Away for more about this.
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 probably ask questions about any problems you may have and examine you and order 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.
Doctors often advise most people who have had their GI carcinoid tumors completely removed to return after several months for a complete physical exam and imaging tests to look for any signs of recurrence. Blood and or urine tests may be helpful for some patients. Further visits may be recommended every several months after that. For small rectal tumors, proctoscopy is often recommended 6 and 12 months after treatment. Small tumors of the appendix, when adequately treated, usually don't require close follow-up, as they are very unlikely to recur. Repeat upper endoscopy once or twice a year is usually recommended for patients with stomach carcinoids who have high gastrin levels. Your doctor may follow one of these schedules, but he or she might have reasons to recommend a different schedule as well.
It is very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think about their cancer coming back, this could happen.
Should your cancer come back, When Your Cancer Comes Back: Cancer Recurrence can give you information on how to manage and cope with this phase of your treatment.
Seeing a new doctor
At some point after your treatment, you might see a new doctor who doesn’t know anything about your medical history. It’s important to be able to give your new doctor the details of your diagnosis and treatment. Gathering these details during and 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 the doctor wrote when you were sent home
- If you were treated with radiation (including radiopharmaceuticals), a copy of your treatment summary
- Since some drugs can have long-term side effects, a list of your drugs, drug doses, and when you took them
- Copies of your imaging tests (which can often be stored digitally on a DVD, etc.)
- Contact information of the doctors who have treated your cancer
The doctor may want copies of this information for his records, but always keep copies for yourself.
Last Medical Review: 02/26/2015
Last Revised: 02/08/2016