Our theme for 2023 is Thriving Together and we are going to illustrate that concept throughout the year by sharing the celebrations, triumphs, and milestones that our community is experiencing while living with GIST. See more exciting highlights from #thrivingtogether.
Simon Yeung, Hong Kong
In March 2023, I was diagnosed with lower rectal GIST. It was an unexpected discovery during a routine colonoscopy. An MRI showed that the tumor measured 3.9cm and was situated just above the anal verge. Further examinations, such as a transrectal needle biopsy and KIT gene mutation analysis, confirmed that it is indeed GIST.
As the reality sank in, my doctor explained that the current tumor was deemed unresectable. Resection would require an abdominoperineal resection (APR), but there was hope that with significant shrinkage through Imatinib mesylate (IM) treatment, a lower anterior resection (LAR) with anal sphincter preservation could be possible. Together with my surgeons and oncology doctors, we devised a plan for neoadjuvant therapy with IM for six months before surgery. Before beginning treatment, I underwent a PET-CT scan to establish a baseline for assessing the response to IM during the course of treatment.
Like most individuals faced with a daunting diagnosis, I went through the stages of denial, anger, bargaining, depression, and acceptance. However, I made a conscious effort to expedite the initial stages and arrive at acceptance sooner, acknowledging that living with GIST was now a part of my reality.
Coping With a GIST Diagnosis
Coping with GIST, especially in its lower rectal form, presented its unique challenges. I was told that rectal GISTs are typically aggressive, and the rarity of this specific type added to the uncertainty. Initially, it was quite intimidating, but I recognized that my fear stemmed from a lack of knowledge. Determined to equip myself with information, I took it upon myself to become my own GIST advocate. I prepared a list of questions for every doctor visit and diligently researched, through various channels, to understand my condition better. In my quest for knowledge, I was fortunate enough to stumble upon the Life Raft Group and joined the global GIST Patient Registry. This invaluable resource provided me with a wealth of information about GIST and connected me with fellow patients who generously shared their experiences with me.
Advice for Fellow GISTers
To my fellow GISTers, I offer a simple piece of advice: choose to face our diseases with a positive attitude. Embrace each day, regardless of the challenges that come our way. Stay connected with our loved ones and friends as they become our pillars of strength on this journey.
Hobbies I Enjoy
In terms of hobbies, I find solace and joy in activities such as swimming, canoeing, golfing, and hiking. These pursuits allow me to appreciate the beauty of nature and embrace moments of serenity.
As for the motto that resonates with me, it comes from the movie “About Time.” Tim Lake, states, “I just try to live every day as if it was the final day of my extraordinary ordinary life.” This quote reminds me that making the most of life doesn’t necessarily require time travel or extraordinary circumstances. It’s about giving our best, cherishing every moment, and embracing the people and surroundings with no regrets.
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 Sahibjeet Parmar, Director of Data Mgmt. & Research, for more information: firstname.lastname@example.org
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