I just found out I have GIST.
Everyone reacts differently when they are told they have gastrointestinal stromal tumor, or GIST cancer. No matter how we handle those words, “you have cancer,” it’s a shock for every one of us. When told that GIST is a rare sarcoma, a cancer of connective tissue, it can be even scarier. The first thing I would want to tell you is, however you react is OK. If you need to cry, cry. If you feel compelled to write a will, DO IT. If you turn into a robot, clicking things off your list, one at a time—that is fine too! Feel however you need to feel, and be kind to yourself. Hopefully, there will be a few useful things for you to learn in this section of our website. Above all, remember that you are not alone. There are hundreds of us on GSI who can answer questions, listen, and support you as you begin this journey.
On the Voices of GIST page of our GIST Support International website you will find discussions and essays about the flood of feelings generated by a GIST diagnosis. Sometimes, it really helps to read how other people have coped, what they have faced, and to see that our own feelings are not unusual, but shared. We add these “voices” all the time, and if you would like to contribute, just let us know. One thing we have all learned is that you just never know when someone else’s words will be just what you need, whether it be about talking to a doctor, the nervousness of “scanziety,” or how to avoid the embarrassing “scan-gowns!”
Other People's Reactions
People may say odd things. On learning about your diagnosis, other people are liable to say some wonderful things, and some idiotic or hurtful things. If you can, just let the hurtful things go, and focus instead on the supportive, helpful, and caring people you will meet on this journey. The people who say the hurtful or stupid things (usually) just do not know what to say. If the person is important to you, you may have to tell him or her what you need from them. Tell them if they say something that hurts, and let them know that you are entitled to feel however you feel right now. The Human Side of Cancer is a wonderful book that may help you with this. Our website includes an excerpt from this book at this link.
My Friends' Reactions
Sometimes friends may avoid the issue and possibly avoid YOU because they are uncomfortable thinking or talking about cancer. Maybe in time they will grow into a new way of thinking, but meanwhile don't let it bother you. We have collected a series of comments about this issue on our GIST Support Wiki at this link.
“I never heard of this type cancer before!”
GI stromal tumor or GIST is not one of the common cancers. Most cancers are carcinomas arising from skin-like epithelial tissues, but GIST is a sarcoma. Sarcomas arise in the connective, or supportive, tissue (including fat, muscle, blood vessels, nerves, bone, cartilage). Sarcomas as a group account for only about 1% of all adult cancers. GIST is only one type of sarcoma. This fact changes your role as a patient. Your primary care physician, your local surgeon, and your local oncologist may have never had another GIST patient. They will not be up to speed on its treatment. They will not have an automatic standard protocol to follow. Reading about GIST in medical publications is not enough. GIST is a very unpredictable sarcoma, and its treatments are very new, and on the cutting edge of medicine. One GIST case is not the same as the next. The variables are numerous, even before therapies such as imatinib (Gleevec). For example, in some patients, GIST tumors can appear to “grow” on CT scans. This can be actual tumor growth, or it could be that the tumor is swelling as it dies. An expert will know this, and know how to react. A doctor who has only treated a few cases may not. This is only one example of some of the variables in GIST behavior and treatment.
Being Your Own Advocate
The patient with a rare disease has to be willing to learn more about his/her own condition and critically evaluate the quality of care offered. Many GIST patients choose to travel to expert sarcoma centers for consultations or for regular care. You may be able to find good care locally, but if you choose this course you will need to take more responsibility to participate in treatment decisions based on the realization that you have a rare disease. If your case is complicated, or if you have existing inoperable or metastatic tumors, seeing an expert as soon as possible is prudent. If nothing else, you can establish care, and have them available to consult with your local MDs. GIST tumors can grow incredibly fast at times, and weeks can make a difference. If you have already seen an expert, then that physician will already have your files, be up to speed on your case, and act quickly to save your life. You will need to ensure that those records are updated consistently.