Go to main content

Who can help:You’re not alone

Assembling the best GIST care team

Living with GIST (gastrointestinal stromal tumor) or any cancer can feel very lonely. But, taking the lead on your own well-rounded care team can help you feel more in control. It will help make sure you get the care and support that you need, too.

  • You’re in control Learn all you can about GIST and treatments. This will help you have good communication with your doctors. The Life Raft Group has a lot of educational resources. Also:
  • Read up on GIST, attend live events, or watch webcasts
  • Learn about your treatment options
  • Ask your doctor questions if you don’t understand something. The American Cancer Society has some great tips to help the doctor-patient relationship
  • Stay organized—keep track of all your medications, side effects, symptoms you’ve had (with dates), appointments, dates of tests and procedures, bills, etc. Here’s a chart that might help.
  • Consider seeing a GIST specialist Because GIST is so rare, many doctors—even cancer specialists—may not have much experience treating it. A specialist who treats people with GIST often will be more familiar with what you go through and what you may expect. He or she may also be more up to date on the latest treatment options. The Life Raft Group and GIST Support International have lists of GIST specialists that you can search.
  • Consult a dietician Cancer, surgery, and treatments can all change your nutritional needs. A dietician can help make sure you’re eating the best you can. The Academy of Nutrition and Dietetics can help you find a dietician in your area. Click on the “Find an Expert” button in the corner and search for someone with expertise in cancer/oncology nutrition. They also have suggestions for how to eat right to fight cancer.
  • Connect with other people with GIST Not only can other people with GIST and support groups lend a sympathetic ear, but they can share practical advice and experience. Check out:

Making tough decisions

Watch two people living with GIST discuss working with a specialist.

Help your loved ones be great GIST care partners

At some point, everyone can use a hand. But no one wants to be a burden on the people they care about. Being clear about your needs to your loved ones can help them feel like they’re being the best partners they can. At the same time, remember that care partners have needs and deserve breaks too.

The American Cancer Society has excellent resources for care partners and family. Cancer.net has some smart ideas to help caregivers take care of themselves. The National Cancer Institute also provides useful information for Family Caregivers in Cancer.

You have a lot of support

The links provided on this site are really just the beginning. Local, national, and international groups are all waiting to help you on your GIST journey. You can find an extensive list of resources and support information at The Life Raft Group.

Financial help for people with GIST

It’s no secret: treating cancer can be expensive. But cost should not be a barrier to receiving proper treatment. There are many organizations dedicated to helping people with GIST afford treatment. GIST Support International and The Life Raft Group both list groups providing help for everything from co-pays to travel assistance and lodging for your family.

The National Cancer Institute also offers some smart insights into managing costs and medical information, including information on Medicare and Medicaid.

The GIST journey

Living with GIST is a marathon, not a sprint. Learn about GIST, tests, and treatments.

Learn more

Living with GIST

Practical tips on adjusting to the new normal and dealing with everything that comes with GIST.

Get tips

GIST FAQs

Quick answers to some of the most common questions people have, plus links to learn more.

Find answers