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Living with GIST:Making adjustments

Adjusting to the new normal

There’s no sugarcoating it: A cancer diagnosis changes things. It may test roles, relationships, routines, and patience. Many people say it can also strengthen connections to others and give them a better sense of themselves. Either way, a diagnosis is a big deal. It can happen in an instant. But adjusting to it can—and deserves to—take longer. Here are some things to think about.

Keeping on top of GIST

Watch Santy and Laura talk about keeping up and staying positive.

Follow-up care

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. Expect regular check ins with your doctor and periodic tests that may include MRI or CT scans. Some doctors will want people with GIST to take imatinib for years to help prevent GIST from coming back—even when tests are looking good.

Dealing with side effects

Unfortunately, side effects are possible with virtually all the treatments you may be prescribed for GIST. Drug makers usually provide information about dealing with side effects on their websites. Your doctor may also be able to offer some ideas to help reduce their impact. Sometimes, it’s hard to tell if what you’re feeling is from the treatment or from the GIST. That makes it even more important to share what you’re going through with your doctor.

In addition to speaking with your doctor, you can check out the Life Raft Group's guide to managing side effects. They also offer 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.

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.

Have a plan

Did you know that there are nearly 17 million cancer survivors living in the US? And that this number keeps going up? It’s a great group to be a part of, but it doesn’t come with directions. That’s why it’s smart to work with your doctor and care team to come up with what’s called a survivorship care plan. This is a way of keeping records of your treatment and everything you go through after treatment to help you maintain your health. Having all your information organized can help you get the follow-up care you need.

Give back to the GIST community

A lot of people living with GIST are very grateful to those who have helped them through their ups and downs. As a person living with GIST, you can help others with GIST by giving back to the community. Here are some ideas:

  • 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!

The GIST journey

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

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Who can help

How to build the right care team and be an active member of the GIST community.

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

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