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 August is Paul Britton. Here is his GISTory:
Paul’s GISTory
Paul & Mim Britton, Switzerland
Our GISTory started when my family and I were on our 2019 Christmas family vacation in Australia. After a few days in Australia, with no prior symptoms, I had some abdominal pain, similar to appendicitis symptoms. After consulting a doctor and running a few tests, the doctor sent me to the ER. They immediately did a CT scan which revealed a large mass in my abdomen. Investigational surgery was necessary. On Christmas Day, and at the age of 51, I had my first-ever surgery and first extended hospital stay. The GI surgeon removed a 16 cm mass that was attached to the small intestine. I was very lucky with the surgery as the GIST tumor had minimal impact on my organs. A few weeks later while I was recovering from surgery in Australia, the surgeon confirmed that I had GIST cancer. He also informed me that my tumor had ruptured and had a mitotic rate of 30/50 which put me in the GIST high risk category. On receiving this information I searched online and found The Life Raft Group website where I read a number of presentations and articles. One key piece of advice from the readings was to conduct a genetic mutation test. I did so and organized myself a test to find out my GIST mutation, which I learned is exon 11.
On returning to Switzerland, where we live, we needed to find an oncologist to manage my treatment. Although the first oncologist we were recommended to was very nice, we soon realized she had little knowledge about GIST as she had only treated three GIST patients prior to my case. As a result we endeavored to find a GIST specialist and luckily for me as a result of Mim’s perseverance, we were able to get an appointment, in a relatively short time, with Dr. Antonia Digklia at the University Hospital of Lausanne (CHUV). Dr Digklia specializes in research and treatment of sarcoma cancers. She currently heads the sarcoma unit at the CHUV. Due to my high risk of recurrence and an exon 11 mutation, she prescribed me 400 mg imatinib daily for life.
Since 2020, I religiously take my 400 mg imatinib tablet, and continue to be NED and have MRIs on a regular basis. Initially, the doctor scheduled them on a monthly basis to monitor for any recurrence. As results remain clear, she spaced out the appointments. Now after four and a half years, I moved to a six-month frequency. The main symptoms I have had to manage since taking imatinib are fatigue (which has reduced somewhat over time), intense cramps, and a very mild skin rash. I have been very lucky as to date as I tolerate imatinib quite well. In addition to having GIST I also have hemochromatosis (iron overload) which requires regular blood removal.
The biggest GIST challenge is linked to mental health. GIST disrupted how I think about the future. I was used to planning for the long term. It took me a while to adapt to my life with GIST. What really helped me was seeing a life coach which enabled me to focus more on the important things in life, while balancing my disease and working approx 50 hours a week in a large corporate office.
Coping with a GIST Diagnosis
My family, especially my wife, Mim, has been a great support and I do not know what I would have done without them. Mim comes to all my appointments and tests, is always there for me and is so positive. She has spent numerous hours connecting with people, supporting us in our journey, adjusting the family schedule to my needs, and often reminding me to make sure I take my medication.
Additionally I had adjustments to do mentally as I like to make plans for the longer term future. Once diagnosed with GIST, this type of planning is not always possible. Now I have managed to focus much more on the near term, a year or less, and enjoying doing things today and building memories with Mim and our two sons, Louis (21) and Jake (17).
Also, sports have been and continue to play a very important role in my life, both physically and mentally. Carpe Diem! Enjoy Life!
His Advice for Fellow GISTers
While Mim and I read a number of articles and watch videos to try to keep us up to date as much as possible, we are far from GIST experts. Further, everyone’s GISTory may be different with its own unique challenges.
Considering this, the things that helped us in our journey are:
- Make sure that you are being treated & monitored by a GIST specialist
- Know your mutation to get the right treatment
- Advocate for yourself
- Having a strong support network
- Seek support, especially for mental health challenges
Hobbies He Enjoys
As mentioned above, sports has been and continues to be very important in my life. Luckily I live in beautiful Switzerland which offers a wide variety of outdoor activities. I like to be quite active and ride at least three times a week, row on Lake Geneva when I get the chance, play golf every few weeks, and of course, ski during winter. When I have time I also like to read historical fiction novels, hike, go to the theater and concerts, and travel, especially in Europe.
Motto for Life
Just do it, as there is no better time than now.
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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