Uterine Sarcoma NOS Survivor

My story starts in October of 2006 when I had one day of very heavy bleeding during my period. Thinking little of it, after all, it went away and at 48 having unusual periods is normal. Well, it happened again in late December while I was in Mexico on vacation. When I got home I scheduled an appointment with the doctors because I had every 'itis' while on vacation- laryngitis, conjunctivits, sinusitis, and bronchitis. I was told at the doctors I needed to make a separate appointment for my bleeding concerns. My annual was coming up a few weeks later so I waited. By then I was lightly bleeding 24/7.

At my annual I was told that everything felt ‘normal’ and I was sent for a pelvic ultrasound which found 2 fibroids (according to the radiologist’s report)…one large and one small. (the report definitely said fibroids, not the possibility of something else). Because of that report my gyn. did not feel a critical need to see me so scheduled an appt. 5 weeks away. Well, 1 week prior to that appt. I hemorrhaged so badly I ended up in the ER. They too confirmed the fibroids via an ultrasound. However, they asked me if I might be pregnant as ‘something’ was crowning and they couldn’t see my cervix. After several hours, and after being suctioned, the bleeding subsided and after a phone consult w/my gyn I was allowed to go home. My gyn appt. was bumped up to the following day. I hemorrhaged again in her office I was wheeled to the hospital and had emergency surgery 2 hours later. They removed my uterus and cervix. I had never had any major surgery before. I was sent home 3 days later and couldn’t believe how much pain I was in. I couldn’t move anything without hurting.

Ten days later, on April 23rd I found out the large fibroid was not a fibroid. It was a 10 cm. sarcoma. We have since had 3 pathologist look at it. Even though it mostly resembles ESS (endometrial stroma sarcoma) it had some bizarre characteristics to it. For that reason it is called sarcoma NOS and is classified high grade. During that time I was sent for blood work several times, a CT scan, and then a PET scan. Fortunately everything has come back normal. About 2 1/2 months later I had more surgery to remove my ovaries and tubes. Thankfully that was able to be done lapriscopically. Since then I have had checkups every 2-3 months, get CT scans and am taking tamoxifen and megace. Of course no one told me I'd be thrown into traumatic menapause. This continues to be a challenge dealing with the extreme hotflashes, sleeping issues, and general quality of life of which acupuncture has helped tremendously. This has been quite a journey. I'm 2 1/2 years clean. Apparently when I reach the 5 year mark I can breath a little easier and stop taking the meds. Although the tumor did not penetrate the uterine wall it was within the smallest hairline from it. As women we need to know that abnormal bleeding may not be normal and need to advocate for ourselves. No one should have to go through this.