Hello all! I’m so pleased this board finally exists. We’ve had so many wonderful support threads over in general health but a dedicated board is a huge step forward.
I’ll kick things off with my own story.
In April 2022 I noticed I had been left looking bloated following what I thought was a tummy bug. Being a size 10 it was very noticeable, so I called the dr. She did a CA125 test which came back at 420 so I was referred on the 2ww for an ultrasound.
At this the doctor discovered 2 large suspicious masses, one on each ovary. I was told then and there they thought it was cancer. I couldn’t believe it. Life has been a surreal horror ever since. I was 36, and this was low grade so very rare.
I had major debulking surgery in June 22, where we discovered cancer cells in 5/8 removed lymph nodes. I had 6 rounds of chemo and then went onto Anastrozole. My CA125 rose throughout chemo and eventually my 9 month post treatment CT showed potential recurrence, a PET has recently shown activity in lymph nodes in my pelvis chest and clavicle. Next week I have a biopsy scheduled to test the clavicle, and I am desperately hoping it is not cancer. I had Covid and a dental infection when I had the PET so fingers crossed!
Im trying to live my life to the full while being crippled with fear at all times. Physically I am mostly fine, fairly horrible joint pain and hair that is not yet quite back at bob length, but mentally things are hard most days.
I’d love to meet others with ovarian cancer, especially if you are also low grade!