Coping with GIST diagnosis is a huge hurdle that patients have to deal with. There are many questions that go along with GIST diagnosis. The first and probably most important thing that you need to know right now is this: Whatever you are feeling at this moment is completely normal. There is no right or wrong way to feel and the sooner you accept that, the sooner you can begin coping. Do not feel ashamed or worried about your reaction to the news that you have cancer. At least one other person on this planet has reacted in a similar way.

You may have already asked yourself questions like, “Why me?” or “What did I do to deserve this?” Again, this is a normal, albeit painful part of the coping process. No, this is not your fault. No, you are not being punished for something you did in your past. And why me? We just don’t know. Cancer doesn’t pick and choose people; it’s ugly and it’s not fair, but this is the reality we live in.

You may also be asking yourself or others the question, “Am I going to die?” For most of us, this sentence represents our deepest fear. Commend yourself for facing it and articulating it.

Repeat this sentence to yourself: “Cancer is not a death sentence.” The outlook for many people diagnosed with cancer is very good. There are about 4,500 to 6,000 cases of GIST each year. This number is growing because more and more people are becoming cancer survivors in the wake of targeted GIST treatments like Gleevec. In the past ten years, doctors and scientists have made incredible strides in GIST research and treatment. Many more people are alive today with stable or no evidence of disease (NED). An important thing to remember is that many people with GIST can carry on with very little change to their lives. Just as GIST is not a death sentence, neither is it a reason to withdraw from the world. Many side-effects of common GIST treatments are mild and due to the infectivity of traditional chemotherapy, GIST patients do not carry the stigma of hair loss. Right now, you may be reading these words but not really hearing them. That’s okay. These words represent a place that you need to get to on your own. What you need to focus on now is getting together a support system that will help you through this early stage so that you can take care of your mind and body.

Find someone to accompany you to appointments and help you do research. You may be able to do this on your own, but do you really want to? Sitting in a doctor’s office while they expel words like peritoneum, exons and metastatic will probably cause your brain to operate on overload and your thoughts to go elsewhere. Feelings like helplessness and fear use up much of your mental energy. It is helpful to have someone else there to take notes for you.

At diagnosis, your mind is filled with many different facts, emotions, plans and scenarios. Here are some helpful hints that may allow you to take your first steps out of the “fog”.

Tips for Coping with GIST Diagnosis:

  • Get informed. You have taken this step already; you have found the LRG. Many people throw themselves into research when they are first diagnosed because they want to learn as much as they can about their disease. While this is a smart idea, it shouldn’t stop there. Support groups are there to offer each other support, a helpful ear to listen and resources. Where better to go for information than others like you, many who have been in the trenches longer than you have. Browse this site. Check out the information on initial treatments and understanding GIST. You can find GIST specialists here, as well as clinical trials updates. The LRG also runs a secure email community. Become a member, fill out a free application and get connected to hundreds of patients and caregivers with their own helpful hints and tips. Not sure which treatment to go with? Ask the patients.
  • Open your mouth and say it. Find a support system. This cannot be stressed enough. A parent, sibling, child, trusted friend. It doesn’t matter who as long as you can rely on them. Not only do you want someone to help you when you cannot handle it on your own, you also need someone to listen to you. Many people want to be strong and show that they can stand up to cancer. One of the ways you do that is by expressing how you feel. This is not a sign of weakness, but a way of keeping your self mentally healthy. Bottling up intense and complex emotions only weakens your judgment and your spirit.
  • Take care of yourself. This is a difficult road you are traveling on. Take time out each day to do something you enjoy. Baking, playing a game, listening to music, watching a movie and gardening are examples of uplifting activities. Right now you might be thinking that these are the last things that you would like to be doing. You might be thinking you would much rather hide under your covers until it’s all over. You might even think that you won’t be able to enjoy those things that you used to love doing. This isn’t true, when you immerse yourself in a project, you distract yourself from your worries and become focused on something other than GIST. Try starting off with something simple, like listening to music for a half-hour or watching a movie before leaping into a project. Don’t think about GIST, just allow yourself to be the person you were before diagnosis. You may find that you are still every bit that person.
  • Exercise. As long as the doctor feels you are ready and you feel up to it, exercise a little. Start off slowly if you feel uncomfortable. Do some yoga or stretching in your own living room or try walking or swimming. Exercise can make you feel better physically and mentally.
  • Keep your spirits up. This may sound like a bandaid on a much bigger problem, but it’s not. Don’t let yourself get overwhelmed with sadness and anxiety. While it’s still completely normal to feel that way, you can’t let it weigh you down. Do something that makes you happy. Talk to someone who makes you feel good. Keeping a positive attitude affects the overall quality of your life. You will need this on your journey with GIST.

Use these tools to begin walking on your path. Armed with your support system, your new knowledge and resources, you are ready to face GIST head on. Take a deep breath and remind yourself, “I can do this.”

Still feeling overwhelmed? Confused? Email us at for more information.