On July 7th, 2022 at 24 years old, my entire life changed. I was diagnosed with Epithelioid Sarcoma. I want to share my story to spread awareness about Sarcoma cancers, as well as the importance of advocating for yourself in medical settings. I first found the tumor in August of 2021, 11 months before my diagnosis. Between August of 2021 and June of 2022, I saw 4 different doctors, all of whom told me essentially the same thing, “a small lump, nothing to worry about,” “likely to never cause any issues,” “follow up with xyz doctor if needed.” I went from an OBGYN, to my primary care doctor, to a new OBGYN, and then finally to an OBGYN surgeon. No doctor ordered any scans or tests during my appointments. With the second doctor, my primary care provider, I even asked him to write a note in my chart stating that he did an exam and that it was “nothing to worry about.” The 3rd doctor I saw, an OBGYN, misdiagnosed the tumor as a Bartholin Cyst, stating that it would likely “never bother me again.” A week later the tumor started growing rapidly, so I called the last OBGYN I had seen, and they scheduled an appointment for the same week. Since I was in a lot of pain, they scheduled surgery for the next day to remove it.
Then, I tested positive on the routine pre-op COVID test. I was the first surgery scheduled the next morning, and I received the results in the middle of the night. We called the hospital and there was no answer. We decided to head to the hospital anyway. The front desk staff let us go back to the pre-op area, but when we got there the head nurse said my surgery was canceled and I would need to come back in 10 days. I was in complete shock, and in so much pain that I couldn’t even say anything. Thankfully, my husband was there. He convinced the nurse to call the surgeon back and tell her that I absolutely needed this surgery today and I was not going to wait another 10 days. I had emergency surgery a few hours later.
The surgeon told us they were sending the tissue for a biopsy, which they stated was standard procedure. I waited two weeks for answers. Then, I got the phone call that changed everything. I had another surgery a few weeks later to ensure we had clear margins. Following surgery was more testing, an appointment with the U of M, and a trip to the Mayo Clinic. The doctors agreed I was in remission, and agreed on a surveillance schedule. As of right now, I am in remission. Overall, I spent 11 months searching for answers, feeling crazy that I was so worried about something that every medical professional told me to forget about. I am so grateful I listened to my gut. I am very, very grateful for my husband, who advocated for me so strongly and ensured my first surgery happened when it did. Always advocate for yourself and what you need. Trust your gut. If you’re worried about advocating for yourself, bring someone trusted with you. To me, sharing part of my story means bringing awareness not only to Epithelioid Sarcoma, but all sarcomas. Of all the cancers diagnosed each year, only 1% of those are sarcoma cancers.