February 10, 2025 — I got those words you never want to hear:
“It’s cancer.”
I was 45 years old at the time.
After multiple doctors misdiagnosed this rare form of GIST sarcoma, years of documented complaints, and finally finding an extremely compassionate, caring doctor, I got the answers I had been looking for.
Going back about five years, I raised concerns about a feeling of pressure in my pelvis, along with stabbing pains traveling from my pelvis to my lower abdomen. I also started to notice an umbilical hernia forming in my belly button.
I had been experiencing bleeding with bowel movements and was told the pelvic pressure was most likely due to a possible bladder prolapse, and the bleeding was due to hemorrhoids—both of which I was told could result from childbirth over time. I was also experiencing anemia.
So, I chalked it all up to the hernia and assumed that was the cause of my pain.
I would later find out that my anemia was due to a tumor that was chronically bleeding internally, and my symptoms were from this tumor growing in my lower pelvic/rectal area.
In 2024, I found an amazing GI doctor who performed a colonoscopy. She discovered a tumor in my pelvic/rectal area, but because of its characteristics and the risk of bleeding, she couldn’t biopsy it. She recommended a specific type of biopsy—an ultrasound-guided needle biopsy—which she did not perform.
Around that time, I learned she was leaving the South Shore of Massachusetts to go to Boston to work at Brigham & Women’s. I told her that once she was established, I would like to follow her and continue being her patient.
In the meantime, I was referred to another GI doctor and had an MRI done. That doctor told me he had never seen anything like this in that area, believed it looked benign, and advised leaving it alone due to the risks of surgery. He suggested it might be more OB/GYN-related, like a fibroid.
After learning it was on the pelvic side, I decided to see an OB/GYN in March 2024, only to receive the same response—that it appeared benign.
I raised my concerns and recommended we monitor it with an MRI. He agreed, and six months later, another MRI was done. After reviewing those results, he reassured me again that it was not cancer and said he was 98% sure, suggesting it was likely a cyst or fibroid.
About three months later, in January 2025, my original GI doctor called me out of the blue. She was now fully established at Brigham & Women’s in Boston and told me, “No one can say this isn’t cancer without a biopsy.” She had found a specialist who could perform the biopsy and asked if I could come in within a few weeks. They rearranged the schedule to fit me in.
I agreed—and two days after the biopsy, I got the call. On February 10th, I was diagnosed with GIST cancer (Gastrointestinal Stromal Tumor).
What I’ve since learned is that this type of cancer is very rare outside the GI tract, which makes it even harder to diagnose. I was told I would need lifelong oncology monitoring and possibly long-term treatment.
I was immediately referred to a GI surgeon in Boston who specializes in sarcoma to remove the tumor. I had surgery in April 2025.
A few days later, I developed a pelvic abscess, which ruptured. I was rushed to Boston—an hour away—for emergency treatment to stop the bleeding. I was then told I would need emergency colostomy surgery.
In order to do it properly, I also needed my umbilical hernia repaired at the same time.
I had surgery in May 2025 and was in the hospital for another eight days. I was so excited to be discharged on May 11th—it was Mother’s Day and my husband’s birthday. But less than a week later, I was rushed back to Boston with an intestinal infection called C. diff, which caused a flare-up of colitis I had never experienced before.
What I thought would be a few weeks to a month out of work quickly turned into four months.
At this time, I have not been able to have a colostomy reversal because I haven’t healed properly. I would need another surgery for repair, or I may have to live with the colostomy permanently. I am still undecided.
This coming April 2026 will mark one year since my diagnosis, and so far, all scans have been clear—No Evidence of Disease.
Since being diagnosed, I look at life very differently. I’ve made many lifestyle changes—from rebuilding my strength at the gym to replacing toxic chemicals in my home.
I am now a patient at Dana-Farber in Boston and have started a targeted treatment called Gleevec. I undergo scans every three months, as this is an aggressive form of GIST cancer.
I will be joining
The Race to Cure Sarcoma, In Boston with the Sarcoma Foundation this May with an army beside me!
Word of Wisdom
Prioritize your health, advocate for yourself, and trust your instincts. Focus on what brings you joy, and don’t hesitate to reach out to organizations like SFA for support.
