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Living with GIST:Making adjustments

Is my GIST experience normal?

There's no denying it: A cancer diagnosis changes things. It may test roles, relationships, routines, and patience. A diagnosis is a big deal. It can happen in an instant. But adjusting to it can––and deserves to––take longer.

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. 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.

Looking for more information and resources?

Dealing with scanxiety

Whether you’re currently undergoing treatment, or you’ve been pronounced low risk or cancer free, follow-up care is going to be part of your life. You can expect regular check ins with your doctor and periodic tests that may include MRI or CT scans. For many patients, this can lead to a feeling of scanxiety, that anxious feeling that comes with always waiting for your latest test result and hoping for the best but preparing yourself for the worst.

When dealing with scanxiety, It's important to understand why your doctors are running these tests. They want to keep a close eye on your scans because every tumor is different—some tumors are slow growing and will not show much progress, sometimes for several years, but then can become more serious. Others may be effectively controlled by medication but then develop resistance.

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, or even a clinical trial. No matter what your scans show—you have options.

Being your own GIST advocate

Watch Santy and Laura talk about the importance of asking questions and staying positive.

For care partners

Caring for yourself

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 in addition to your loved ones.

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.

Looking for more information and resources for caregivers?

Coping with physical and emotional challenges

You are probably already very familiar with the effects of the disease and its treatment. Things like bleeding, fatigue, pain, nausea, loss of appetite, and weight loss are hard to miss. The emotional burdens people sometimes have to deal with may be harder to recognize, though. Uncertainty, stress, anger, depression, guilt, grief, and fear are all common among people with GIST and other cancers, and you shouldn’t suffer in silence!

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

Some people confuse palliative care with end-of-life care, but that’s not the case. You can start palliative care as soon as you learn you have cancer. Studies show that adding palliative care can improve your quality of life and help you live longer. The Center to Advance Palliative Care offers some guidelines for how to get palliative care and get started with your doctor and care team.

Making healthy choices

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.

Sign up for more information about making healthy choices.

Connecting with the GIST community

A lot of people living with GIST are very grateful to be a member of support groups that help them through their ups and downs. As a person living with GIST, you should know that there are entire communities of people who are familiar with what you're going through because they're on their own GIST journey or their loved one is. Here are some groups that offer more information and support:

  • Share 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, an online community where members support each other and exchange treatment information and tips about living with cancer.
  • You could also consider becoming a Life Raft volunteer or mentor to share your experiences directly with someone who could use your support.
  • The American Cancer Society also has many ways you can get involved. Volunteering helps people, and it feels good, too!

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.

Care Team Discussion Guide

Are you unsure of what questions to ask your GIST care team? This guide can help.

Download guide

Find a GIST Specialist

GIST is rare–not every oncologist is a GIST expert. This tool will help you find a GIST specialist who is right for you.

Search specialists

Managing GIST

Understanding the GIST treatment landscape and managing potential side effects.

Learn more