To encourage a sense of community and help create a forum on this page for GIST patients and their families or friends, we encourage you to submit your story in the form below. After review, your submission will be published here. We highly value your perspective and, by hearing your stories, we feel motivated to work harder to find a cure. Please share your experiences and know that you have our enduring support.
Submitted by Cathy Sherman Freeman
April 21, 2016
"When I turned 50 my family begged me see my gp. I thought living from bed to sofa and eating three bites was “normal”. My family saw major symptoms. I didn’t. Losing weight was good. I was 40 years anorexic. Who needs to eat? An endoscope found a 5 cm tumor with a bleeding ulcer on it. Surgery was performed at my local hospital. The bottom stomach valve was removed with the tumor and resulted in an even harder time eating. But no worries, doctor and surgeon said my tumor was “benign.” My father died in 1974 of “benign” paraganglioma tumors that started in his abdomen. I asked for a copy of my path report to see if there was any chance my tumor was related to my father’s and his sister’s. I found a pub med that said an SDHB mutation could be responsible for both paragangliomas and gist tumors. I started searching for a DNA lab that would test me for this mutation. Two years later I got a confirmation I had an SDHB mutated gene that I was born with. A tumor suppressor gene of the Kreb’s Cycle, Complex II which is now food is turned into energy. At this moment I knew I needed a Gist Specialist and felt lucky there was one in my own state. I emailed Dr. Heinrich and asked if he’d take me as a patient. “Gist” tumors are rare enough. SDHB mutation Gists are even more rare. I’ve only “met” three others with my mutation and gist tumors. For the following six years I’ve been in Dr. Heinrich’s care. I’ve had tumors metastasize three times. First to liver which Dr. Billingsley cut out 2/3rds (right lobe) and the liver grew back in 4 months. I am on an every three month CT scan schedule. We watch tumors grow to approximately 5 cm when I then insist on surgery. I’ve had 4 surgeries in 8 years. At this moment I have five small tumors back in my liver. SDHB deficient Gist is a complicated diagnosis. Too few patients to do definitive phase trials. No medications/chemos that are currently known to work. Yet I feel I am in good hands even without a “Gleevec” to help with tumor growth. I had to accept I will always have tumors. This cancer isn’t going away. Monitoring every three months with PET/CT scans and blood tests to catch the next set of growing tumors is my reality. Dr. Heinrich is “the” doctor to see for regular “gist” and together we are learning slowly about SDHB gene mutated gists. I love the fact I can drive 5 hours from Ashland, get a CT scan, see a specialist and drive home all in one very long day with CT scan results already discussed in the same day. No waiting for results. Dr. Corless has developed a list of gene mutations associated with gist and DNA testing I feel is essential. Dr. Billingsley has made two major surgeries feel easy. Because my cancer is so rare and I lost my father to it when I was a teenager I’ve become a mentor to other’s who are newly diagnosed and an advocate for rare cancer research. My father was Head of Publications and Foreign Relations at Walt Disney Studios in the 1960s where he wrote comic books and travelled the world to book conferences. When I was 8 years old “us” kids were asked to join him on a six week Disney PR business trip to Europe. My father’s cancer pulled the rug out of an ideal childhood. I can’t say living with a currently uncurable disease is always easy. There are days I cry easily. Then I find someone more scared than I am and try to help guide them to a Gist Specialist in their state or if they don’t have one then to NIH researchers and Dr. Heinrich. It is vastly important to have a specialist in one’s corner. If I’d listened to my local surgeon and gp 8 years ago we would not have caught the liver tumors when surgery was still possible. I’ve been given the gift of extra time which has enabled me to met and help teach my now two year old granddaughter to fight imaginary monsters, and stop to smell the flowers. I’ve been blessed."
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