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 Alisha Tokumaru.
Alisha, Hawai’i
My GISTory
In 2013, at just 15 years old, I was diagnosed with SDHA-deficient GIST, a rare form of cancer. I went to the emergency room believing that I had severe gas pains or cramps. Instead, they found a tumor about the size of a golf ball that had burst and I was losing blood fast. I underwent my first two major surgeries. Life quickly changed
I went through years of surveillance, believing for a long time that I had beaten cancer. In 2018, at age 20, routine imaging revealed three tumors along my stomach, and I learned that my cancer had returned.
I still remember walking out of that appointment alone, trying to hold myself together. I made it to the parking garage before completely falling apart. After nearly five years of believing I was cancer-free, hearing that tumors had returned felt like my life had been pulled backward. I was suddenly facing more scans, procedures, treatment decisions, and the possibility of losing a significant portion of my stomach.
Because SDHA-deficient GIST is extremely rare, my treatment options were limited. I ultimately enrolled in a clinical trial through the National Institutes of Health, traveling repeatedly from Hawaiʻi to Maryland beginning in October 2018. Over the years, I underwent countless scans, procedures, blood draws, hospitalizations, and multiple systemic treatments while continuing to live with the uncertainty of a rare cancer.
In 2026, I learned I was never cancer free. There were spots they had been watching the whole time and no one told me. After years of advocating for surgery, I finally found a surgeon at the GIST Clinic who was willing to take on my case. On August 14, 2026, I underwent my third major surgery: an exploratory laparotomy, lysis of adhesions, distal gastrectomy with Roux-en-Y gastrojejunostomy, and cytoreductive surgery.
We expected to find around three tumors and three involved lymph nodes. Instead, 20 tumors and involved areas were discovered and addressed during surgery.
How I cope with GIST
After 13 years of living with cancer, I finally heard the words I had been waiting for:
NED — No Evidence of Disease.
I am home, healing, and learning how to live with my new stomach and my new normal. Cancer has taken pieces of my childhood, changed the course of my life, and challenged me in ways I never imagined. But it has also taught me to advocate for myself, ask for help, and keep fighting for answers.
For 13 years, I learned how to survive.
Now, I get to learn how to live.
I cope with GIST by sharing my story online, attending regular therapy sessions and connecting with other GIST patients. This cancer is a really lonely disease, so a sense of community is important.
My advice to fellow GISTers
My advice to other GISTers is first find a specialist and mutational testing and to reach out to other patients. If you’re hesitant don’t be. Having a support system and feeling not so alone in the world is really important.
Hobbies I enjoy
I enjoy streaming video games, making YouTube videos and animal rescue. Animal rescue has been put on hold for a few years, but I am hoping to get back into it.
My #GISTLife Motto
I live by two quotes:
“You have to fight through some bad days to earn the best days of your life”
“Taking it one day at a time”
Learn more about the LRG Patient Registry!
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
