In 2019, I was diagnosed with a grade 3, stage 4 solitary fibrous tumor (SFT) in my brain. SFT is a rare soft tissue neoplasm with an estimated incidence of around 0.2 per 100,000 people per year. This means that roughly 1 new case of SFT occurs per million people annually.
My 2019 diagnosis followed a misdiagnoses of a benign tumor in my brain in 2006. Since being accurately diagnosed, my cancer has metastasized to my lung; rib; kidney; femur; pancreas; spine.
There is little to no research for SFT. Since doctors do not know how to treat it, “this or that is not indicated for your cancer” is what I commonly hear from doctors.
If my disease continues to metastasize, I will die waiting research to establish protocols and treatments for my cancer. A cancer that is not prioritized given its incidence of roughly 1 new case per million people annually.
I want to live.
I would use any gifts as follows:
- Travel to hospitals across the country and abroad (including airfare, hotel, transportation)
- Next generation sequencing to find my mutations/what drives my cancer
- Excess medical bills
- Surveillance not covered by insurance because it is not indicated, as the right surveillance is not yet known by the medical field
- Surveillance in other countries since research is advancing faster there, than in the U.S.
- Functional doctors. Traditional doctors tell me if they can no longer treat my metastasis through surgery, ablation or radiation, they’ll need to move to chemotherapy, which is also not indicated for my cancer. In addition to poisoning my good cells and immune system that I will need to fight my cancer, chemotherapy can cause secondary cancers.
- Supplements and off-labels
- Prostheses. My 2019 craniotomy was followed with 30 rounds of radiation. That was followed with 4 successive cranioplasties in 2019 due to my body rejecting multiple materials fashioned to serve as my skull. Those surgeries resulted in my being permanently bald on a large portion of my head.
I recently started a support group for those diagnosed with SFT. Cancer is lonely. Having a rare cancer is particularly lonely. After searching far and wide to find a SFT support group, and finding none, I started my own. My first two groups have been attended by people around the world. Each has exceeded two hours. Together, we are driving our survival. Hamsters on a wheel. Strategizing, sharing experiences, supporting each other in the face of exhaustion. Trying to find the next bit of a lifeline to survive.
If you are able to contribute to my fight, I would be eternally grateful.
I would also be grateful if you would share my GoFundMe far and wide (email, social media, anything else you can think of). In addition to raising donations for me, it may reach someone that has this awful rare cancer and is looking for peer support.
Most importantly, please cheer me on.
If you would like to learn more about my journey or support group, or prefer to send a donation in another way/format, please feel free to reach out to me directly.
Thank you,
Michelle Carter
