Thought it was time I should give update on my surgery since I had great support and advice from everyone on this site when I posted in May 2018 when I had first recurrence in para aortic lymph node.
Turns out surgery was not possible laparoscopically - the tumour was in a pretty dangerous spot - right next to the aortic vein. Because of this I was referred to the liver transplant surgeons who work expertly around complex areas. I was petrified (understatement), but in the best of hands. It took until July 2018 before surgery actually happened. I am now 6wks post surgery and feeling not too bad considering I have another major 20cms abdominal scar.
Had oncology meeting last week and we decided no chemo since there was nothing else visible during surgery (surgeon said he had a really good look). It's a bit of a grey area on whether starting chemo early is any more beneficial at this stage. Oncologist thinks it is better to avoid chemo until when - or as I say "if" it is needed in the future. However, she wanted me to think about it and if it's my decision to have chemo then that's what they'll do. My CA125 is 12 - which I was pretty chuffed about. But ... been down this road before. I just hope if there are some microscopic c.cells lurking about they've gone into hibernation .... for a very, very long time! So I'm going on observation and will have next appt in November to check CA125.
The oncologist tells me its quite rare to have just one lymph node involved. I know some of you have had recurrence in para aortic LNs - has anyone else had it in just one node? Or has anyone else just had surgery with no treatment after?
Many thanks .... cheers, Ruth
Hi Ruth. That's great news actually. Happy for you :).
Well my recurrence happened in some pelvic lymph nodes, nowhere near the aorta. And there were more than 1 ln affected... 11, to be pecise. But otherwise, successful surgery left me in a similar situation to yourself.
My oncologist gave me a choice of hitting any potentially remaining micro tumour cells over the head with chemo (with the added benefit of guideline compliance i. e. a possible advantage regarding insurance cover for future treatments) , or go back on watch & wait.
Personally, this time I opted for chemo (so I can say 'at least I tried...') ... but you could go either way.
All the best and a long remission and swift recovery. Maus
Thank you so much Maus for your quick reply. It's good and important that we are also involved in our treatment decision-making and I wish you all the best with yours - may those micro tumour cells be well & truly knocked on the head!! That's great that you went from 2015 to until recently before starting chemo.
Its funny how wording can affect you psychologically - my oncologist, instead of saying 'watch & wait' uses the term 'observation' - which really means the same, but somehow is much more comforting to me
I just quickly read your profile - I laughed when I read your comment about the day a German gets caught jay-walking! I see you mentioned about tumour being ER. I also asked as I worry a bit about that. I started and stopped taking vaginal pessaries since they have a small amount of oestrogen. Oncologist assures me it is so minuscule it would not do any harm. She also told me that most OC tumours have certain levels of being ER (eg low to high). My first pathology report in 2015 didn't mention it at all and for this recent tumour I was told that because the tumour wasn't very big it makes it harder to get accurate info re ER. I think we just have to be guided by their expertise (says she who won't use the pessaries just in case).
All the best to you Maus!