My name is Michelle Cormier-Del Orbe, age 44, I live in Worcester, MA, with my husband Vladi and our dog Luna. We love nature and gardening. I currently work part-time as an ABA therapist for children with a diagnosis of autism.
My diagnosis was found accidentally but turned out to be a gift from God. My cancer was discovered in July of 2023, during the process of kidney donor evaluation at UMASS Hospital in Worcester, MA, for my brother Daniel, (who has late-stage renal failure). At the end of the donor evaluation, multiple masses were discovered in my lungs and a mass on my left psoas muscle. Further tests confirmed, a diagnosis of stage 4, Malignant PEComa, a soft tissue sarcoma which is incurable, extremely rare; with approximately one in one million cases a year around the world.
Prior to this diagnosis, I had hysterectomy for uterine fibroid tumors in April 2015. The tumors were removed, and I was diagnosed with PEComa with unknown malignant potential. At that time there was less knowledge about PEComa and no targeted drug available.
I was confused by the diagnosis, as I was not symptomatic. I asked my oncologist 3 times if I really had cancer. Initially, having cancer and starting treatment was terrifying, as there are so many “unknowns,” I was fearful of my own mortality and how my life would be affected by chemo.
I met with Dr. Matthew Hemming at UMass hospital in Worcester, MA and Dr. Andrew Wagner at Dana Farber Cancer Institute in Boston, MA, who both focus on research and treatment of sarcomas. My doctors are compassionate, generous with their time, and patient with me while I frequently ask questions. I am grateful for all the caring individuals that have brought me comfort in this process. I was given a lot of tissues at the beginning of this journey at my infusions.
Navigating this process has been difficult, but other survivors’ insights assured me that my thoughts/feelings are like their own and are valid. I’m grateful for my husband who sits with me at every chemo treatment, and for my brother Daniel, who ultimately led me to my diagnosis. We are closer than before as we both are battling serious illnesses.
Although there is no cure, the goal is to keep the tumors from further invading my body. I started chemotherapy in October 2023, with the only targeted drug available for PEComa called Fyarro, I am also the first person to be treated for PEComa at UMass Hospital. I have had 11 cycles of Fyarro, to my relief side effects have been bearable and have continued to lessen as my body has adjusted to its new lifestyle. Currently my scans show tumor stability, some shrinkage and no new growth! Sometimes I forget that I have cancer, until I’m reminded by tests and doctor appointments. I’m no longer needing boxes of tissues at my infusion appointments!
As I “Googled” everything that I could find about my condition (PEComa), it was hard to find info and research, as it is so rare. I take detailed notes about this disease and pick the brains of my doctors, they are probably tired of hearing me talk.
During my “Googling” I found SFA and got involved in the Race to Cure in Boston to support sarcoma research. When asked about my cancer, most have never heard of it, even individuals in the cancer community. Getting involved has helped me to not feel alone or helpless against cancer. In doing so my faith has increased. I talk about PEComa often to bring awareness about this disease.
Oddly enough, I’m more positive with cancer, than prior to my diagnosis. Today small inconveniences are not as important as living each day with purpose and hope. I try to enjoy each day that I wake up. SFA acknowledged donations on my behalf for RTC and asked me to share my story. I am amazed at the generosity of family and friends who raised money for sarcoma research on my behalf. My goal is to bring awareness to PEComa. I WANT EVERYONE TO KNOW WHAT PECOMA IS.
Words of Wisdom
Reaching out to others in the cancer community is a must, they are kind and wonderful people who are willing to listen and share their experiences. Be aggressive in self-advocacy; ask questions and do not give up no matter what the answers are. Do not give in to cancer! Remember, the hospitals are generous with their tissue supply in the oncology department!
What is PEComa?
Advanced malignant PEComa is a certain type of cancer known as a soft tissue sarcoma.
The “PEC” in PEComa refers to perivascular epithelioid cells, which are the type of cells that make up the tumor. Sarcomas are a rare type of cancer that forms in the bones and soft tissues, including fat, blood vessels, muscles, and nerves.
Malignant PEComas are tumors that are very aggressive and can spread to other parts of the body.
If a malignant PEComa is found in the early stages, it may be surgically removed with no further treatment.
Locally advanced or metastatic malignant PEComa refers to PEComa that cannot be removed by surgery and/or has spread (metastasized) to other parts of the body.
A very rare type of cancer
There is only about 1 case per year out of every one million people in the world. Malignant PEComas may be hard to diagnose because they are so rare, occur anywhere in the body, and often look like other types of cancer.
Sources
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8601264/pdf/jco-39-3660.pdf
https://rarediseases.org/rare-diseases/perivascular-epithelioid-cell-neoplasm/
