As part of our Faces of Courage Series, we are featuring a patient of the month on the 13th of each month.
Why is the number 13 significant? 5,000 people are diagnosed with GIST each year in the United States. That’s 13 people diagnosed each day. Read more about this at our Rare 13 site.
Our Patient of the Month for July is Santy DiSabatino. Here is his story:
“I remember the first time I heard the word GIST. I was in the recovery room after having a colonoscopy and endoscopy done due to what was perceived as a stomach issue (not truly related to the GIST) and due for a ten-year colonoscopy. I was in the recovery room and the surgeon said: “Your stomach is fine.You have an infection in your intestine which two antibiotics should clear up, and you have a 14 mm GIST. My office will call you in a few days and schedule you for a six-month endoscopy. If the GIST has grown at that time, I will remove it and your gall bladder”. I had no gall bladder pains; tests just showed it was functioning at 19%.
The surgeon turned and walked out. I thought “What is a GIST”?
I went home and immediately Googled it. I was in shock! I had no idea it was a tumor.
I also saw there was a website for GIST International and from that website found my godsend, The Life Raft Group!
I immediately registered with the LRG, and received a phone call from Laura Occhiuzzi , who set my mind at ease and made me feel cared for. Thus began a lifelong relationship with the LRG. I don’t know what I would do without Sahibjeet Kaur, the Patient Registry Associate. All staff at LRG when I call ALWAYS listen to what I have to say, what may be troubling me, or what questions I may have. They do their best to answer all of them or find someone who can. They are caring all the time
From that point, my GP sent me to a GI doctor. On February 28, 2018, he did another endoscopy and several needle biopsies which confirmed it was a spindle cell GIST. This endoscopy said it was 15 mm in size.
When the GI doctor phoned me with the biopsy results he stated “If you were my dad, I would be telling you not to wait six months, have it removed now.”
Twenty-four hours later, his nurse called and told me the doctor had discussed it with the surgeon who performed the January 22nd colonoscopy and endoscopy, and they agreed to wait a year, look at it then for growth, and possible removal.
I DID NOT take this advice and response to heart. I did not call the GI doctor and ask him why he changed his mind. Instead, I immediately went back into the LRG GIST Specialists database to look for any surgeon in my area of Greenville, SC, and there was one! I called Dr. John Rinkliff’s office immediately and scheduled an appointment for a week later.
We talked about my journey, and he said we would meet again in a week after he heard from the GI doctor as to why he told me “Take it out one day and the next day, wait a year”. When I went back to Dr. Rinkliff a week later, he said he would remove it. Because of its size, 15 mm, he did another endoscopy to tattoo it so he could see it better when he was doing the laparoscopic surgery. Surgery was performed on April 30, 2018. It was successful. The tumor was removed. It was encapsulated with clean margins. The biopsy results showed it has a mitotic rate of 7/50 and was 2.0 by 1.8 cm.
I then scheduled an appointment with an oncologist in Greenville, SC, who is also in the LRG database. Dr. Siegel and I have met twice. Through the LRG’s recommendations (thanks again to Sahibjeet I had Doctor Siegel send the tumor out for molecular testing. It came back as Exon 11.
I am now on Gleevec 400 mg once a day, began June 22, 2018, for what Dr. Siegel says will be three years. I now watch what I eat more, and have lost 18 pounds, unrelated to the disease or Gleevec, which I needed to. I have a great family and friends who care about me.
I look at my GIST tumor and disease as a case that was fortunate to be found “by accident”. My issues that I thought were stomach related, and my GP thought were gall bladder related, and my GP’s Physician Assistant’s early on commented that if tests were negative for gall bladder we would have to do an endoscopy remained in my head. When the first surgeon said he did colonoscopies and I was due in a month, I requested the endoscopy to see what the problem was in my stomach. I kept pushing and advocating for myself.
I cope with the disease by keeping busy. In my spare time I love to garden, work out at the YMCA four times a week, spend time taking my grandson to school or picking him up after school, and volunteering at our local hospital’s gift shop. When gardening and working out I also love to listen to my favorite music from the mid 60’s to early 70’s. I also spend at least 1-1/2 hours a day on the internet keeping abreast of all there is to know about GIST and articles related to it. It helps me know more about the disease that I am fighting.
If I have any advice for fellow GISTers it would be to keep fighting on, and ALWAYS remember to be your biggest advocate and supporter for your health. If you feel uneasy about a doctor’s opinion, advice, or care plan, email the LRG support group for advice. People in the group have GREAT ideas and advice. Many have been in our “shoes” before and their experiences and advice are priceless. So are their constant daily words of encouragement.
If I have a favorite quote it would be: “This too shall pass”. I seem to be using it a lot lately. I remain positive and focused each hour of each day.”
Criteria for Patient of the Month
- Patient must be a member of the LRG Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has a GIST/PRiME account
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Interested? Contact Denisse Montoya, LRG Patient Registry Director for more information: dmontoya@liferaftgroup.org
