In our monthly patient and caregiver stories, we share our community’s stories because each GIST journey matters. Your experiences as a rare disease patient or caregiver create a tapestry of strength, resilience, and shared understanding. By sharing, you not only break the chains of isolation but become a beacon of hope for others facing similar challenges. Together, these collective narratives shape a powerful force that drives awareness, research, and advocacy. Your voice matters, and by sharing your story, you contribute to building a stronger, more connected, and empowered rare disease community. Help others realize that even though they battle a rare disease & that each GIST case is unique, they are not alone.
Our Patient of the Month for September is Megan O’Connor. Here is her GISTory:
Megan’s GISTory
Megan O’Connor, California, USA
My journey with GIST has been short but very intense with a total roller coaster of emotions. After at least 2-3 years of suffering from stomach pain or “heart burn,” a 7cm tumor was found in my stomach through an endoscopy in Feb 2025. The first doctor I saw said, “You’re lucky, you don’t have cancer.” The second doctor called it a ‘dumb cancer’ – meaning it won’t spread. This was a relief until I googled “GIST” and continued to get sent to cancer websites which contradicted everything I heard. Now, I had to face that I did, in fact, have cancer.
Through this journey, I was fortunate to find The Life Raft Group where videos, articles and support groups were invaluable to helping me understand and process this diagnosis. By April, I connected with my mentor, Caroline Ruiz who was instrumental in me getting a more precise diagnosis.
Continuing with my local doctors, I was put on imatinib and told wait at least three months. While I wanted the medicine to work, I was having physical side effects, and it made me depressed. When I spoke with Caroline, she encouraged me to talk to a GIST specialist. I was already exhausted with managing this new disease but, I forced myself to consult with Dr. Schulte at University of California San Francisco (UCSF). He noticed that I had no mutational testing done yet, so he ordered testing and arranged for my scans to be done sooner than planned.
By May, my mutational results showed that my mutation is SDHB, meaning that it is drug deficient and the CT scan confirmed that the tumor was continuing to grow. Now, not only did I have a rare cancer, now I have the rarest kind. It was confusing and discouraging.
The Life Raft Group came to my rescue again! When I updated my results in the patient database, my case manager referred me to Dr. Sicklick at University of California San Diego (UCSD), an expert on SDH GISTs. In June, I had a 10-hour surgery. Dr. Sicklick and the entire team at UCSD was amazing. The tumor was larger and more spread out than the scan showed. Six other smaller tumors were found in my liver. The result was that about 50% of my stomach, 20% of my liver and my gall bladder were removed. Recovery was tough, but three months later, I am back to full activity.
Coping with a GIST Diagnosis
Currently, I am NED (no evidence of disease) and because my mutation is drug deficient, I am not on any medication. My mutation (SDHB) is genetic so now I am focused on advocating for my extended family to get tested and be proactive for their own health. Now, my future is staying vigilant through CT scans every four months. Because my stomach is smaller, my eating habits have changed, but it is a small price to pay for my health. So, I am enjoying life to its fullest. I feel better than I have in over two years, both physically and mentally!
Her Advice for Fellow GISTers
The Life Raft Group is the best source for information and support throughout your journey. However, know that your journey will be unique. Be tenacious and continue to push for the right medical team for you. Always consult with a GIST specialist, get your mutational testing and get a mentor.
Hobbies She Enjoys
I love hiking with friends, enjoying live music with my partner, John, and playing with my dog, Scout. I have always loved cooking but am focused now more than ever on cooking healthy meals.
#GISTLife Motto
“Tough times don’t last, tough people do”
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.
If you want to be our LRG Patient of the Month or Caregiver of the Month, please see the criteria below.
Criteria for Patient of the Month
- Patient must be a member of the LRG GIST 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 GIST Patient Registry Online
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Criteria for Caregiver of the Month
Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.
Interested? Contact our Data Mgmt. & Research Team, for more information: patientregistrydepartment@liferaftgroup.org
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