Clear Cell Carcinoma

[Bettyb87]

Hey All,

I'm a newbie here posting on behalf of my mum, who has just been diagnosed with stage 1A ovarian clear cell carcinoma (OCCC). She had her debulking surgery in late Jan and is now being offered watch and wait or adjuvant chemotherapy as options.

I've read that OCCC is chemo resistant. Just wondered if anyone was in a similar position, which route you've taken?

I'm a bowel cancer survivor myself but ovaries are brand new territory for me, so just looking for some advice for my mam!

Thanks so much,

Betty xxx

[Doggies221]

There is no straight answer to your question scientifically speaking. It’s a personal choice and you may have to consider how large the tumor/ cyst was to try to make your decision. And how larger the tumor was in relation to the cyst. A additional factor is how detailed the staging was. Was the operation open laparatomy or laparoscopy and how large was the cyst, if you don’t mind sharing? Good luck in making difficult decisions!

[Bettyb87 in reply to Doggies221]

Thanks so much for your reply! The oncologist said chemo would provide 6% less likelihood (of recurrence or disease free survival, I'm not sure) but that this figure might be less as it was such an early stage. I'll ask mum what size the tumour was inside the cyst, I don't think she's been given this information. I do know that the cyst was a serous cystadenofibroma that was 20cm x 12cm and weighed 2kg! But the tumour was well inside of the cyst and so she had totally clear margins. She had an open laparotomy with removal of ovaries, tubes, omentum etc. xxx

[SuffolkJen]

Hello Bettyb87

Sorry to hear about your mum’s diagnosis but I’m glad you’ve found this site.

I was diagnosed with CCOC stage 1a in September 22. Mine was an unexpected diagnosis as they thought I had fibroids found after my salpingo oophrectomy hysterectomy, but there was a possibility of cancer as my CA125 was raised to 76.

I was advised to have adjuvant chemo notwithstanding it has a limited affect with clear cell. I asked my onc if I was his wife what would he tell her to do and he said to have the chemo.

I just wanted to satisfy myself that if I had a recurrence I’d done everything at the time to prevent it.

It’s a personal decision and unfortunately no one has a crystal ball…..

I’ve been NED since my operation (before chemo) so I consider myself very fortunate.

I wish your mum good luck for the future whatever she decides xx Jen

[Bettyb87 in reply to SuffolkJen]

Thank you so much Jen, really helpful response, I appreciate it xxxxxxx

[Yorkiepudd]

Hi BettyB87, I was CCOC 1c (plus a separate endometrial cancer) in 2019 and offered single or dual agent chemo as a ‘belt and braces’ approach. I had the ‘standard’ six cycles of Carboplatin/Paclitaxel (and also radio for the womb cancer) and have been NED since.

As Doggies221 said, there’s no scientific right or wrong, but they also wouldn’t put folk through the treatment if it had no effect at all. Clear cell is less responsive to platinum based chemo but I’d never heard it was resistant.

Sadly it’s still a decision only your mum can make and appreciate it’s so much to deal with.