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 July is Jim Mills. Here is his GISTory:
Jim’s GISTory
Jim Mills, Michigan
A long-term survivor story – My introduction to GIST took place on Memorial Day weekend 2004. I was 46 years old. I was on my third morning of a solo backpacking trip along the Michigan’s Lake Superior shoreline when I began to experience abdominal pain that slowly grew worse as I walked. It felt as if I’d been punched in the stomach. I soon realized that I needed to get off the trail and ended up walking over twenty miles back to my car. I should have gone to a doctor right away but didn’t. Instead, I delayed for three months convincing myself that I would get better. I also should have told my wife but didn’t want her to worry. Those were both bad ideas.
By the end of August, I finally told my wife that I wasn’t well and needed to see a doctor right away. Within 24 hours, I’d seen our family doctor, had my first chest to pelvis CT scan, been evaluated by another doctor, and been referred to a surgeon at St. Joseph Mercy West Hospital in Ann Arbor. There I had another CT scan, and my first endoscopic ultrasound.
On October 4, 2004, I underwent surgery to remove a “tumor of unknown origin.” At that point I felt miserable and was looking forward to the procedure. My surgeon thought the tumor was attached to my colon and told me to expect to lose a section of it. The next day, I learned that the tumor had been attached to the back of my stomach, next to my gall bladder. He had removed the tumor and only a button sized section of my stomach. He had also removed my gall bladder as a precaution, along with my appendix, since they had started the search in my colon. A ‘three for the price of one’ surgery.
When the pathology report was available, I learned that tumor had been identified as GIST. I’d never heard of GIST, and it didn’t immediately have a big impact on me. The tumor was 17 to 18 cm in diameter, and it had a mitotic rate that was described as ‘one or essentially zero.’
At that time, there was not a lot of good information on GIST that could be found on the internet. What I did find indicated that based on the tumor size, I was high risk for reoccurrence but based on the mitotic rate I was low risk. My oncologist had two other GIST patients, and I don’t think he knew any more about GIST than I did. He offered to put me on Gleevec which was a fairly new drug at the time, but I decided that I was not ready to do that yet. I eventually found The Life Raft Group website and learned that there was a local support group that met regularly. I started to attend those meetings and am grateful for the knowledge I gained from the other attendees.
My oncologist monitored me with quarterly chest to pelvis CT scans. Those were reduced to two times a year, and then once a year. He also referred me to my first colonoscopy, and that has become a once every five years event for me as well. After several more years, my doctor and I agreed to stop the scans with his advice “you know what to watch for.”
Around that time, mutational testing started to become available and The Life Raft Group was encouraging patients to have their GIST tumors tested. I completed the paperwork they provided and several months later I learned that my results reflected the PDGFRA Exon18 D842V mutation. That indicated my form of GIST was resistant to Gleevec and Sutent which I had declined. At about the same time, I learned that GIST tumors attached to the stomach were less likely to reoccur.
Life pretty much returned to normal for me. I continued to work, and, in the summers, I liked to go off on long solo backpacking or canoe trips. Two years ago, I retired, and last year at the age of 66 I decided to attempt a through hike of the 2,197 mile long Appalachian Trail (AT). I’ve wanted to do this since I was 16.
Last May I started out near the middle of the trail in Harpers Ferry, WV and headed north across Maryland, Pennsylvania, New Jersey, New York, Connecticut, Massachusetts, Vermont, and over the White Mountains in New Hampshire. I lost far too much weight and had to take a three-week break before resuming my journey across Maine.
On September 18, I summited Mount Katahdin and then flipped back to Harpers Ferry, heading south. Hurricane Helene hit while I was in the Shenandoah Mountains and the trail was shut down. After completing 1,243 miles of the AT, I had to go home. It was probably for the best as I was looking emaciated. I have 953 miles to go, I’m at a healthy weight again, my pack is ready, and I hope to restart my journey soon.
Coping with a GIST Diagnosis
After 21 years, I rarely think about GIST anymore. I certainly did experience anxiety in the first years after the 2004 surgery as I had a family that was dependent on me. I coped with this stress by focusing on fitness and kept my mind busy at my work where I dealt with a lot of distracting government contract regulations. I also liked to take my dogs for fast six-mile walks once a week and continued that for twenty years.
His Advice for Fellow GISTers
My first piece of advice is to ensure that you get mutational testing. My second bit of advice would be: Listen to and learn from others with GIST experience but understand that what works for them may not work for you.
Hobbies He Enjoys
I never really had hobbies before I had GIST. Post recovery I became interested in researching my family ancestry. I think that was sparked because I’d had a lot of time to think about my own mortality. Another hobby is bird watching in my own backyard. I have spent years encouraging the growth of a small green refuge for migrating and nesting songbirds.
#GISTLife Motto
“Do not take counsel of your fears or the fears of others.” In the case of a cancer diagnosis such as GIST, fear and anxiety are normal. Try to recognize it and then remove the emotion from your decision making. This applies to family, friends, and those around you. Listen to what they have to say if their points are valid, but don’t let their emotion or opinions overly influence you.
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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