After Treatment for Gastrointestinal Stromal Tumors

For some people with a gastrointestinal stromal tumor (GIST), treatment can remove or destroy the cancer. You might be relieved to finish treatment, but it can be hard not to worry about cancer coming back. This is very common if you’ve had cancer.

For other people, the cancer might never go away completely. Some people might still get regular treatments to try to control the cancer for as long as possible. Learning to live with cancer that does not go away can be difficult, but many people find ways to manage their health and maintain a good quality of life.

No matter what your situation is, there are steps you can take to live well, both physically and emotionally.

Follow-up care

During and after treatment, it’s very important to go to all your follow-up appointments. During these visits, your cancer care team will watch for signs of a GIST coming back (recurrence), as well as any side effects of the treatments you’ve had.

Talk with your doctor about developing a survivorship care plan for you. This plan can guide your next steps after treatment, including follow-up appointments and ways to stay healthy.

What’s usually in a survivorship care plan

A survivorship care plan might include:

• A summary of the diagnosis, tests done, and treatments given
• A suggested schedule for follow-up exams and tests
• A schedule for other tests you might need in the future, such as 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 health care team
• Diet and physical activity suggestions
• Reminders to see your primary care provider (PCP) for routine health care and cancer screening

What to expect during follow-up appointments

Follow-up visits often include careful physical exams and tests such as blood work or imaging, especially if you remain on targeted drugs in the years after a GIST is diagnosed. How often you follow up with your care team will depend on your cancer, its response to treatment, and other factors.

For example, almost any cancer treatment can have side effects. Some might last only a short time, but others can last longer or might not show up until months or years later. It’s important to report any new symptoms to your cancer care team right away, so that they can find a cause and treat it, if needed.

If the cancer comes back

If a GIST does recur, your treatment options will depend on:

• Where the cancer is located
• What treatments you’ve had before
• Your overall health
• Your treatment preferences

For more information on how recurrent cancer is treated, see Treating Gastrointestinal Stromal Tumors. For more general information on dealing with a recurrence, see What Is Cancer Recurrence?

Social and emotional health after cancer

Once treatment is finished, a number of emotional concerns can come up.

Some of these might last a long time and can include:

• Dealing with any physical changes that happen because of treatment
• Worrying about the GIST returning or new health problems developing
• Being treated differently or discriminated against by friends, classmates, coworkers, employers, and others

You might also feel:

• Resentful for having had a GIST
• Resentful for going through treatment when others didn’t have to
• Guilty for surviving cancer when other friends with cancer did not

It’s normal to have some anxiety or other strong emotions after treatment, but feeling overly worried, depressed, or angry can get in the way of relationships, work, and other aspects of life.

With support from family, friends, other survivors, mental health professionals, and others, many people who have been treated for GISTs can thrive despite the challenges they’ve faced.

If your feelings are getting in the way of your daily life, consider reaching out for support. The American Cancer Society is here to help:

• The National Cancer Information Center is available 24/7 at 1-800-227-2345 to discuss support resources in your community.
• The Cancer Survivors Network provides a safe online connection where cancer patients and caregivers can find others with similar experiences.