Granulosa Cell Tumour GCT

hi everyone. 

just looking to know if anyone of you has this rare type of cancer, or HAD as my husband keeps telling me. 

so a 9cm cyst was discovered in November following my periods just becoming really irregular. I was then referred to gynae dept as a red flag referral.

Had MRI and bloods, another ultrasound scan and internal.

When MRI came back mid February it was then 11cm, I was booked in for surgery in March for omentum removal, hysterectomy and both ovaries and tubes.

I spoke to 2 different consultants and both said I had a low chance of malignancy and one wasn’t concerned about cancer, before surgery. My CA125 was normal and endometrial biopsy was normal prior.

So went for post-op review this week and he said they weren’t expecting this but they found abnormal cells in 1 ovary. It was cancer, it was confined to that one ovary and it hasn’t spread anywhere else, including the fluid. All else was clear. I say fluid because the cyst burst really easily on them during surgery and therefore he said it is automatically a 1C1 grade now.

He was very positive about it all and they are going to do bloods every 6 months and CT scan in a few months. He said if my levels rise, they will do a scan and then surgery to remove anything. He says I may not have it again but given it grew 2cm in 2 months, I am not so sure. But I know I need to be more positive. Easier said than done. He said it wouldn’t lower my lifespan but how does he know this for sure.

I am worried about reoccurrence - my online researching has shown that;

“Diffuse Peritoneal Spread: When GCTs recur, they often return as multiple, small nodules scattered throughout the abdominal cavity (peritoneal metastasis) rather than a single, easily removable mass. This makes total surgical resection technically complex or impossible.”

Has anyone any experience of return? Maybe if it’s regular monitoring, these would be picked up early and the consultant also told me that they don’t invade tissue like standard ovarian cancer does.

So here I am, it definitely hasn’t sunk in yet.

I was hoping to get discharged with a clean bill of health! Instead it looks like a lifetime of bloods and scans. I honestly think I already had health anxiety but maybe this will help me overcome that, because I have no choice to do anything different. It honestly just seems like a life changing diagnosis and that things will never be the same again. I’ll always have a constant worry over me?

Thanks for reading this long winded post. Looking reassurance really ️ xx