I was recently diagnosed with rare form of ovarian cancer called a Sertoli-Leydig Cell Tumour which accounts for less than 0.5% of all malignant tumours and is not detected on a CA125 blood test. I had a unilateral oophorectomy in May and the tumour was 1C, awaiting CT scan in 4 weeks. I am eager to find more information or maybe other patients like me. It’s the first case for my Gynaecologist & Oncologist so their knowledge and experience is limited, which increases my worry-meter. Any insight or familiar situations would be hugely appreciated.
Hi DezzyM and welcome to the Ovarian Group.
I’m sorry to read of your diagnosis-it can make it harder to connect with others in the same position when you have a rare variant of any cancer. However, now that you’ve reached out in the group, other ladies might come along who’ve had this diagnosis too.
It seems that even your medical staff have limited experience so I wanted to suggest a good charity organisation which may provide some extra information for you, and the chance to connect with others as they also have an online forum.
I hope you’ll still keep in contact here in the ovarian group and let us know how things go with your CT scan and proposed treatment plan, and I wish you all the best with this.
Sarah xx
