Frequently asked questions about GIST

Understanding GIST

• What is a GIST tumor?

  GIST stands for Gastrointestinal Stromal Tumor. It’s a soft tissue sarcoma that can occur anywhere in the digestive tract (40‑60% of GIST cases happen in the stomach, 25‑35% in the small intestine, 5‑15% in the colon or rectum, and ≤1% in the esophagus). Very rarely, a GIST can happen in the abdominal cavity—this is called an eGIST.

  You can learn more about GIST from the American Cancer Society.

• What causes GIST?

  It’s not clear exactly what causes GIST. No lifestyle or environmental risk factors have been identified, though most people with GIST do have a gene mutation, which may drive tumor development. Why that mutation happens to some people has not been determined.

• How common is GIST?

  GIST is very rare. Around 4,000-6,000 cases are identified in the US each year. Only about 1% of gastrointestinal cancers are GIST. GIST can happen at any age, but is more common in people older than 50.

• What is resistant GIST?

  Doctors say that a GIST is resistant when it no longer responds to the drugs being used to treat it. When a GIST becomes resistant to one drug, a new treatment needs to be tried. There are 2 main types of resistance you may hear about that are related to GIST:

  Primary resistance means that someone really doesn’t respond to a drug at all from the start (the first 6 months of treatment). Primary resistance and intolerance to imatinib is seen in around 10‑15% of people with GIST. It is usually caused by a specific gene mutation.

  Secondary resistance happens when someone who had successfully responded to a drug for a while (6 months or longer) then stops responding. Resistance can be localized/limited to one or two areas or generalized/widespread affecting more areas.

• What are GIST mutations and do I need mutational testing?

  All cancers, including GIST, begin when one or more genes in a cell mutate. A mutation is a change that’s usually caused by damage to genes in a cell at some point during a person’s life. It’s not clear why this happens.

  Genes make proteins that control how cells work. Mutated cells can create abnormal proteins or prevent proteins from forming. Either can cause cells to multiply and become cancerous.

Treatment

• How will I know if my GIST treatment stops working? What do I do?

  Your doctor is the first person you should speak with about your GIST treatment.

  You may not be aware that your GIST treatment is no longer working, or you may develop new symptoms that signal something is wrong. Because it may be hard to tell on your own, it’s important to have a plan for regular follow-up appointments and tests with your care team.

• How do I find a GIST specialist?

  GIST Support International has a searchable database of GIST specialists by location. You can also consult The Life Raft Group.

• How do I find a GIST clinical trial?

  Some people with advanced GIST consider joining a clinical trial for the chance to try a new treatment that is not approved by the FDA for GIST yet. You can read about new trials for GIST treatments at Life Raft Group’s Clinical Trials website. The National Cancer Institute and The National Institute of Health also offer information about clinical trials.

  Also, be sure to sign up for ongoing education, support, and information about future treatments from GISTTogether.

• Why is treatment adherence important?

  For any drug to work, it's important to take it exactly as it's prescribed. This is called treatment adherence.

  In order to make sure you're staying on schedule, consider:

  • Creating a reminder on your cellphone
  • Keeping a sticky note reminding you when to take the medication on a surface you see every day, like the fridge
• What if my GIST tests/scans aren’t good?

  Unfortunately, even people with GIST who seem to be responding well to treatment sometimes get bad news from their doctors. Some tumors are slow growing and will not show much progress, sometimes for several years, but will then become more serious. Others may be effectively controlled by medication but then develop resistance. Still other people may be in remission with no detectable cancer and, at some point, it will come back (recurrence).

  GIST specialists have seen it all and will work with you to create the best plan of action possible, whether it’s different drugs, surgery, a clinical trial, and/or palliative care.

  Despite best efforts, recovery from GIST is not always possible. At some point, treatment options may run out. If this happens, it’s really important to have open and honest communication with your family and healthcare team about your feelings, preferences, and concerns. The American Society of Clinical Oncology has a free downloadable booklet, Advanced Cancer Care Planning that you may find helpful (also available in Spanish).

• How do I talk to my doctor about GIST? What should I ask?

  Asking questions about your disease is extremely important. In order to be your own advocate and make informed decisions about your treatment, you need to know what questions to ask. Check out this guide for some topics and example questions to discuss with your care team at your next visit.

• What should I think about when considering multiple treatments?

  There are a few approved treatments for GIST. Your treatment needs may change over time. Sometimes, even when you take your medication as prescribed, a GIST can still grow. This is called cancer progression. It can happen because the tumor is or becomes resistant to the drug (the drug won’t work like it’s supposed to). If this happens, your doctor may decide to switch you to another treatment.

  Here are some key factors to consider when choosing a new therapy:

  • How the treatment works
  • Does it target a specific gene mutation
  • How it can help
  • Possible side effects
  • How to take it
  • How much it costs (be sure to look out for each individual manufacturer's savings cards and financial programs)

  For some topics and examples of questions to discuss with your GIST care team during your next visit, download this discussion guide.

• How do I handle GIST symptoms and side effects?

  All the drugs used to treat GIST may have side effects. If you experience any, tell your doctor because he or she may have ways to help you handle them.

  The Life Raft Group has a guide to managing side effects and a web-based platform called SideEQ which makes them easier to track and manage. The American Cancer Society offers online help for managing cancer-related side effects including treatment side effects such as hair loss, fatigue, and skin conditions. Emotional burdens are also common among people living with GIST.

  Palliative care is a team approach aimed at improving the quality of life of people facing a life-threatening illness and that of their families. It tries to prevent and relieve suffering with ways to approach pain and other physical, emotional, and spiritual issues. Palliative treatments may include medication, nutritional changes, relaxation techniques, and emotional and spiritual support.

  The Center to Advance Palliative Care offers some guidelines for how to get palliative care and get started with your doctor and care team.

Resources to help support your GIST journey

• How can I help people living with GIST?

  Consider sharing information about your GIST treatment with the Life Raft Group Patient Registry. It’s an ongoing research study on the natural history of GIST and treatment outcomes. Your data will help researchers looking for a cure.

  GIST Support International has created GIST Listserv. It’s an online community where members support each other and exchange treatment information and tips about living with cancer.

  You can also become a Life Raft volunteer or mentor to share your experience directly with someone who could use your support.

  The American Cancer Society also has many ways you can get involved.

• Where can I find GIST support and meet other people with GIST?

  Other people with GIST and support groups can lend sympathetic ears and share practical advice and experience. You can hear from people who understand what you're going through at:

  • The Life Raft and their Facebook group
  • GIST International and their Facebook group
  • The GIST Cancer Awareness Foundation
• In addition to my doctor, who can I talk to about GIST?

  The GIST Mentor Program from The Life Raft Group helps people with GIST and their care partners navigate through diagnosis, treatment, and recovery. The free service will put you in touch with someone who understands where you’re coming from because they have been there themselves.

  Mentors can offer:

  • Assistance in daily management

    Mentors use their own experiences with diet, physical activity, and medicine to help you figure out how to manage GIST in your own life. They can also help identify key resources, such as where to buy healthy foods or go to exercise.

  • Social and emotional support

    Mentors are good listeners. They can help guide you through social or emotional issues and encourage you to stay motivated.

  • Connections to clinical care and community resources

    Mentors can help bridge the gap between you and healthcare providers, and direct you to other resources.

  • Ongoing, long-term support

    Mentors provide proactive, flexible, and continual long-term follow-up.

• I'm a care partner. How can I prioritize my own health/needs?

  It's important to remember that although you may not be the one who was diagnosed with GIST, you have needs and deserve breaks, too. In order to be a great care partner, you need to make sure your own needs are met, 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.

• Is my GIST experience normal?

  It is important to establish good communication with your doctor and care team, and to come up with a care plan based on your personal results and needs.

  Everyone’s experience with GIST is different. Some need surgery, others don’t. Some may have slow growing tumors, others fast. Some may respond well to treatment, others do not. The only GIST you need to think about is your own.

  It can be helpful to hear what other people with GIST have gone through. Support groups can listen to what’s on your mind and share practical advice and experience. You can meet other people who have been in your shoes at:

  • The Life Raft and their Facebook group
  • GIST International and their Facebook group
  • The GIST Cancer Awareness Foundation
• How can I afford my GIST medical expenses?

  Many organizations can help 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 insights into managing costs and medical information, including information on Medicare and Medicaid.

• What should I be eating / how should my diet change with GIST?

  Making healthy lifestyle choices is important for everyone—especially those who are being treated for cancer. While it is not clear if proper nutrition, exercise, maintaining a healthy weight, or quitting smoking will reduce the risk of your tumor growing or returning, these types of changes can definitely have a positive effect on your overall physical and emotional health.

Additional information

• Where can I learn more about GIST?

  There is a lot of information about GIST online. The American Cancer Society (cancer.org), The American Society of Clinical Oncology (cancer.net), the National Cancer Institute (cancer.gov), and the GIST page from the Dana-Farber Institute.

  The Life Raft Group and GIST Support International focus just on GIST.

• How can I keep up to date on GIST and other treatments?

  Your doctor or GIST specialist is always the first person to consult about the latest developments in treating GIST.

  In addition to your doctor or GIST specialist, the Life Raft Group and GIST Support International are both good sources for the latest developments in treating GIST. You can also join Life Raft's online community to receive regular GIST newsletters and more information.

  You can attend live events or watch webcasts. You can also join a GIST Facebook group or support group, and follow #GIST on Twitter. While chat rooms and other forums can be helpful in alerting you to new developments, you also have to approach what you find there with caution. Often, it has not been reviewed by medical professionals.

  Sign up to receive free ongoing education, support, and information about future treatments from GISTTogether.