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 Susan Franze. Here is her GISTory:
Susan’s GISTory
Susan Franze, New York
In April 2021, still reeling from the pandemic, we lost our beloved Shadow, my son’s 7 year old Lab/Boxer mix. He had a tumor in his abdomen (Lymphoma) that was extremely aggressive. My son, David, spent months taking care of him before Shadow could no longer fight the good fight. During that time, we both put off routine health tests that we felt could wait.
That same month David decided to catch up on his preventative care and so did I. I thought I was due for a colonoscopy and decided to see my gastrointestinal physician, Dr. Seth Gendler. The appointment was in June 2021. Dr. Gendler said the test was not necessary at this time but asked me what my main complaint was. I told him I had some bloating, and he immediately ordered a CT scan with contrast. As I pulled into the driveway my cell rang and Dr. Gendler said I was to immediately contact my gynecologist because the radiologist saw a “mass.” Long story short, after numerous tests (CT scans, MRI’s, vaginal ultrasounds) they still could not identify the location of the tumor but knew it was cancer. The thought was ovarian cancer. I was numb. I just couldn’t believe this was happening.
I was scheduled for surgery on July 15, 2021. The plan was a complete hysterectomy. During surgery, my husband Dave received a call and was told there was a “change of plans.” The mass was a GIST tumor and a different surgical team had been called in to perform the procedure. The tumor was encapsulated so it appeared to be contained. After a resection of the small intestine and removal of the tumor, I was in recovery. I feel that Dr. Gendler saved my life. He listened and heard me. He really cared!
I have a wonderful relationship with my oncologist, Dr. Joshua Raff. He started me on 100 mg of Imatinib in August and by September 11, I was up to 400 mg. I remain on the 400 mg today. I refer to this as my “new normal” because there are good days and not so good days. To date, my scans have been NED. I stay positive and am so very grateful for every day!
Coping with a GIST Diagnosis
I cope with GIST by listening to my body. When I need to rest, I do! I am a very active person. My husband, Dave and I have been personal trainers for over 40 years. I taught exercise classes for adults, along with gymnastics and movement for preschool for 20+ years.
Her Advice for Fellow GISTers
My advice to other fellow GISTers is to stay strong in mind and body; be active but listen to your body, follow its lead. Focus on your nutrition and rest (sleep is so important). Meditate and breathe. It really works.
Hobbies She Enjoys
Live by my faith; the love of my family, granddaughters; friends and the joy of my dogs! This is where I get my strength. I am truly blessed. Spending time with all of them brings me so much joy.
Motto for Life
Live, Love and Laugh often, it really is the best medicine.
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
SUPPORT THE LRG & GIST RESEARCH BY DONATING TODAY!
