August 2017 I went to Doctors in severe pain and was sent to gynaecology and accident and emergency. After being there for 14hrs and examined and tested, I was told I had a pelvic infection and was sent home with antibiotics and pain relief to await a scan.
The scan took place at the end of September and a doctor was called in as a lump was found wrapped around my left ovary. I was told I’d be sent an appointment to see a gynaecologist and saw him in November. I was told the doctors didn’t think it was anything to worry about but if I wanted he’d remove it. I said yes as pain was unbearable sometimes. I had the operation in March 2018 to remove both ovaries and fallopian tubes. I wasn’t told until June 2018 that it was GCT.
I would like answers to my never ending case
I was not monitored really and I requested to see him again as the pain was back. I got an appointment in March 2019 with a locum as the original gynaecologist had retired so I explained everything to him and because he knew nothing about GCT he referred me to Brighton hospital to see a gynaecologist who knew more. I had this appointment and then started inhibin b testing. The first one was 36 then the second one in May 2020 was 368.
An MRI showed tumours (5) behind the pelvis. In September 2020 I had a big operation removing the tumours, womb, omentum and had a bowel resection, then November 2020 to February 2021 chemotherapy, inhibin b after was 5. It has slowly crept up again and an MRI in May 2022 revealed 4 more tumours in the pelvis area again. I had further surgery in July 2022 to remove the tumours and had a bowel resection again.
Inhibin b is creeping up again now and awaiting MRI as CT after operation showed 4mm lump. I’m classed as stage 3C.
I had an MRI in February this year and had 2 tumours again so I had surgery in May to remove them. One was pretty stuck to the bowel and the consultant said it was tricky to remove! The pathology report following this surgery shows it’s still on my bowel , I’m now taking Letrozole to see if it helps but consultant has said I will at some stage need to have a bowel resection, he said at MDT meeting that they think I could have a subcategory of GCT as they can’t work out why it comes back so quickly!
So I’ve had inhibin bloods done and an MRI in around 10 weeks to see where I’m at.
I found out about you from a group I’m on called UK GCT Survivor Sisters ! and I am really interested in what RareCan is trying to do. Even if it doesn’t help me, I’m hoping it will help others in the future. GCT desperately needs research and hopefully it will help others in the future to not go through what I have.
It is a relief to know that you are already doing what I hope for GCT by getting it known and getting it out there and talking about it. I would like more people to understand more about this awful cancer so that we can find better treatments and ultimately a cure.