As part of our Faces of Courage Series, we are featuring a patient story 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 on our Rare 13 site.
Our Patient of the Month for March is Cynthia Pearce. Here is her story:
Hello to All! My name is Cynthia (Cindy) Pearce. I think the most unique fact about my story is how my GIST was discovered. In a way I found it myself! Let me explain.
I have had atrial fibrillation for six years and in October 2018, my cardiologist ordered blood work and a CT scan as a routine check on my heart. I had everything done on a Friday and the following Monday I went back to the cardiologist. He said everything looked great and we would probably do another scan in 2 years or so. Off I went, happy that I had gotten a good report.
Fast forward a few days. I decided to look at my online patient portal and review the lab work that had been done. Of course, I clicked on the CT scan results too. Impression #1 was normal regarding the heart findings but wait there’s more! Impression #2 said “Pedunculated ovoid mass…of the proximal gastric body…Recommend gastroenterology consultation and EGD for further evaluation.”
Well, as you can imagine, I almost fell off my chair! After the initial shock I made an appointment with a local GI doctor and had an EGD (esophagogastroduodenoscopy*) a few days later. From the results the doctor suspected GIST and recommended a second EGD with biopsy.
We only live four hours from MD Anderson in Houston, so I decided to have all further tests and treatment there. In a nutshell, I had a second EGD which confirmed GIST, mixed type with PDGFRA D842V mutation. I had a CT scan which showed no metastasis.
I had robotic surgery by an amazing young surgeon this year at the end of January. The surgery was minimally invasive with only five small incisions in my abdomen. My 3.1 cm GIST was removed with clear margins, the mitotic rate was 2/5mm squared and I only lost 10% of my stomach. I was out of the hospital in three days and back home on the treadmill walking three miles on day eight after my surgery. Since they say I have a very low risk of recurrence, my only planned treatment going forward is a CT scan at MD Anderson every three to four months for two years.
I honestly could not have gotten a better outcome.
Through my relatively short journey so far with GIST, I actually found it fairly easy to cope. I had tremendous love and support from my family and friends.
I live with my husband of 43 years on a lake in a small town about an hour away from Austin, TX. He was my constant companion through everything. Quite often I see and babysit my three young grandchildren who live in Austin and of course, it’s hard to be anything but joyful when around them.
I am a Christian and found my faith and prayer from my family, friends and fellow Christians very comforting. Of course, no matter my good prognosis, I know there is always a chance the GIST could come back. But for now, I am just grateful and praising God for how things turned out for me. I know how incredibly fortunate I am when I read on the list serve about others continuing struggles with GIST. Just so you know, I pray daily for all GISTers.
Advice to Fellow GISTers:
I am so new to GIST that I don’t feel qualified to give anyone advice. However, I found the LRG website and the GIST Support International website to be invaluable for GIST information especially when I was first diagnosed and trying to learn all I could. Also, I learned much from other patients through the listserv.
The GIST specialist at MD Anderson said the only thing I could do going forward would be what you would do to prevent any cancer, which is to: eat healthy, exercise several times a week, and not smoke. I do try to tell EVERYONE I can to ALWAYS check their medical records and for them to pass along that advice to others.
For most of us, having online access is so easy. As you now know, my situation fell through the cracks and if I hadn’t checked my own reports, my GIST could’ve continued to grow for another 2 years, until I got another scan. Then I might have had a completely different GIST experience.
I don’t have a motto so to speak but I have many Bible verses that I live by. Also, I think staying positive is critical.
* esophagogastroduodenoscopy is a diagnostic endoscopic procedure that visualizes the upper part of the gastrointestinal tract down to the duodenum.
Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases, and each patient has a unique set of symptoms and manifestation of the disease.
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: firstname.lastname@example.org