My Sarcoma Story – Becky
Right around 4 years ago, I began noticing some significant changes in my menstrual cycle. What were once manageable and fairly short cycles shape-shifted into days of agony every month. Three or 4 days a month would be spent in bed, taking OTC pain meds around the clock with a heating pad on constantly.
After maybe 6 months of worsening issues, I finally decided enough was enough. I went to see our family doctor who immediately sent me to an OBGYN to address my issues.
After testing including ultrasounds and endometrial biopsies (none of which were positive for cancer), we scheduled my hysterectomy for November of 2020. Just before my scheduled surgery, my husband was exposed to COVID, and because I didn’t want to put anyone at risk, my surgery was rescheduled for January.
Because my bleeding had been almost constant for several months, my OBGYN prescribed me a double dose of birth control to try to get the bleeding to stop. Instead, I developed 2 DVTs in my legs, and surgery was put off, yet again. I also discovered at this point I am a homogeneous carrier of Factor V Leiden clotting disorder.
Because I was on blood thinners, my bleeding worsened. My hemoglobin level dropped to 8.2 by April, and it became clear that waiting was no longer possible.
After my hysterectomy, my OBGYN told me my surgery took over an hour longer than expected because I had an 8 cm mass inside my uterus. She didn’t believe it looked malignant, but they sent it to pathology to double check.
After 2 weeks of waiting on pathology, I received a phone call that would change my life forever. My original diagnosis was Müllerian Adenosarcoma with Sarcomatous Overgrowth. After a trip to Mayo Clinic in Rochester a couple months later, my diagnosis changed.
High Grade Endometrial Stromal Sarcoma.
I am so grateful every single day that, despite having to delay my surgery twice, my sarcoma was caught early. I was extremely blessed that the only treatment my cancer called for was the surgery I had already had.
I continue to see my GYN/ONC periodically to keep an eye out for recurrence, because my risk is high, but I have been extremely blessed to be cancer free for over 3 years now!
I now share my story and experience as often as I can. I encourage women to listen to their bodies- If something doesn’t feel right or something suddenly changes, DON’T IGNORE IT. It doesn’t escape me the magnitude of consequences I could have suffered because of putting off my surgery like I did.