Scan shows spreading despite chemo but surgery going ahead..confused 🤔

[Kazzh]

Hello alI

I have stage 4 clear cell carcinoma, had a scan this week and got the results today. My gynae nurse said she could only tell me what was written on a scrap bit of paper which left me with more questions than answers (not impressed with this). I will call again next week but meantime wondered if anyone can throw light on this 🤔

My tumour has shrunk (she didnt know how much) and confirmed surgery will go ahead 7 March.

That is good news, at least they are operating. However, she said they think I now have cancer on my spleen, and the nodules previously found in my lung, abdomen and lymph nodes have not shrunk atall.

I have just had my 3rd round of chemo (carbo & Taxol) but my Avastin was stopped this round in preparation for surgery.

These results are mixed & now I feel more uncertain about things. Anyone experienced anything similar along the way?

[Casamimosa]

Hello Kazzh. No wonder your confused. I would ask to speak to your consultant. Scans at my hospital usually take a couple of weeks for the full report so maybe it was a preliminary notes your nurse had. My OC turned up at the start if Covid which was scary but I received tremendous care. However I had 6 chemos before my op but I think there was a delay or something before I got the call to see consultant about the operation .

Usually you have 3 chemos, the OP, and then 3 more chemos to mop up microscopic cancers. Mine had spread and I had a radical op losing my spleen and lots of other parts.

I think they will be of the mind the follow up chemo will sort out the lymph nodes etc.

I hope this helps. I'm 4 years on now and still fighting. Had ups and downs and currently just started chemo again to get my lymph nodes to behave but keeping positive. I hope you get answers and your operation goes well. it's a long road to recovery but it's worth it to still wake up every morning. Take care.

[Emcee71]

Oh Kazzh I'm sorry to hear this. Never be afraid to call and say 'I'm struggling to understand X could you talk me through it again' and jot down some questions if it helps. I get thrown so easily when feeling emotional.

I'm sorry I can't offer any personal experience too similar to your situation but I'm also Clear Cell and I expect you'll be aware that CCOC is often resistant to chemo and acts a bit differently to the more common type of OC. However the chemo has been positive and worth it in terms of shrinking that primary tumour so that they can take it out. I imagine they will also remove your spleen in surgery which thankfully we can do without. I know I was warned I may lose my appendix and spleen as well as part of my bowel during surgery depending on if they found signs of cancer there, though that didn't end up happening for me.

Then I guess they'll be doing something else clever after surgery for the bits you already knew about that haven't responded to the chemo (shrunk). Sorry I might be totally stating the obvious here in which case I'm sorry, and I hope someone replies who can be more directly helpful

I send you a big hug x

[Emcee71]

Edit sorry they can remove the lymph nodes too can't they?. I had 4 out and in America I think they take them all out sometimes xx