My whole life I’ve had problems with my menstrual cycle, (heavy bleeding, cramps). In October 2019 at the age of 44, I went to see my gyn as normal and decided to get on birth control to try and help the symptoms vs an ablation. They did an ultrasound at that time and noticed a pea sized fibroid (never had one before). I took the pill with no issues for about 4 months and then had to switch to a pill with a higher estrogen level (because of my insurance). Almost immediately I started having heavy bleeding. Bleeding to the point that I went through ultra-sized tampons in an hour, had to sleep with towels under me and eventually had to wear diapers to keep from ruining my clothes. This lasted 2 months before I refused to take them anymore and requested to be seen.
The first thing they did was another ultrasound, it showed the fibroid had grown tremendously. The gyn then did a biopsy and said over and over again, this isn’t cancer. The chances of it being cancer is less than 1%. She said the biopsy found no cancer, but it was a little suspicious. Still saying no cancer, let’s just do a hysterectomy and remove the uterus and tubes. I agreed because I wasn’t having any more children and wanted this bleeding to be over with. She scheduled the surgery a couple of months later.
In the meantime, she also scheduled an MRI about a month later. I had been gaining weight and had bloating, but I literally just blamed it on stress, age and my decrease in exercise. During my MRI the technician sat looking for a long time and asked me more than once if I had ever had cancer, my answer was no. I felt in my gut something wasn’t right. My gyn called me and said the fibroid was much bigger than they saw from the ultrasound and she wanted to move the hysterectomy up a month.
The day of the surgery we were told the surgery wouldn’t be too long, but when I got out my family said I was there much longer than planned. My fibroid was as big as a infants’ head. The gyn did my surgery laparoscopically removing everything vaginally. Well, here’s the bad thing, the fibroid was too large to remove vaginally, so my gyn elected to cut the fibroid to remove it. After I woke up I was told things went well and there was no cancer. I went on with my days and recovery.
Two weeks later my phone rang multiple times from the gyn office and each time I was busy. Then I missed a call from my gyn herself asking me to call her. Of course, I’m still busy actually driving my youngest daughter to track practice when she tells me that the sample they sent out shows cancer. She immediately sets me up to see a gyn oncologist and I am in the office within a week. The oncologist tells me I have High Grade Endometrial Stromal Sarcoma which is extremely rare. She informs me that I need to have another surgery to remove my ovaries, lymph nodes and omentum. Of course, I am in shock, but I’m like ok I can handle this. I had one day of freaking out and that’s enough.
I get my second surgery; we send the tumor to get molecular testing and the oncologist says she got it all. We decide to do chemo because the so-called fibroid turned out to be a cancerous tumor and it was cut. This cutting has now exposed my whole body to cancer. I did 6 rounds of Gemzar and Taxotere which was not easy. I have always been someone who’s been in good shape and loves to exercise. I could no longer do what I was used to and that sucked. I was also going through menopause which had me sweating to death and gaining weight. I was in my last 2 rounds of chemo when COVID-19 hit. I was supposed to travel to Boston to see a sarcoma specialist, but that was no longer possible. After my last 2 rounds of chemo my body blew up from all the chemo and steroids.
I could barely walk around and had to crawl up stairs. Things got a little better, but it took many months and I have never been back to my normal self. I had scans and pelvic exams every 3 months. Things were looking good until they didn’t. I got 16 months of clean scans and then in February of 2021, 2 spots showed up in the pelvic area. That meant doing a PET scan, a biopsy, and an MRI of the brain. Everything else was clear, but the cancer was back in the vaginal wall.
I then started chemo again, this time doxorubicin. After getting half-way through I had another PET only to see the chemo wasn’t working. I was advised to start radiation. I received 30 radiation treatments to the whole pelvic area and on the 2 specific areas. It was a pain to do every morning for 6 weeks, but I was willing to do anything to kill the cancer. I am now about a month out from the radiation treatments and from a pelvic exam it seems to have shrunk some. The oncologist wants to wait another month before getting my scan to let the radiation continue to work. I am praying this works!
I am hoping by sharing my story that I can save someone. I am in a Facebook group for my type of cancer and although it’s rare, more and more women are being diagnosed. Almost all of us had been told it was a fibroid before finding out it was cancer. Mine was caught early so it was contained to my uterus, I truly believe that the cancer wouldn’t have returned so quickly if my gyn wouldn’t have cut into it. I want women to know that if they are experiencing heavy periods, painful periods, bloating please get it checked. Catching cancer early is so important.
If you or someone you know is having problems, get checked and insist for more if you don’t feel like you agree with what the doctor is saying. If they say it’s a fibroid (and it could be), make sure you are vocal that they are not to cut into it for any reason. I wish I would have known to say that; I wish I would have been more educated. I am going to fight and fight hard to rid my body of this disease that takes too many of us from this earth. To my fellow warriors and survivors, please pass on my story, I know it will help someone. 🎗🌻