Para Aortic LN Surgery Update & Question

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

12 Replies

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ruthg55

in reply to Maus123

3 months ago

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!

lesleysage

Hi Ruth,

It was at recurrence that tumours in my para aortic lymphatic system we’re close to the aorta & renal artery; these were removed surgically & followed by dose-dense carbo-taxol + Avastin. My CA125 post op was 256 but dropped steadily during chemo.

My chemo nurses strongly felt that chemo should be held back until there is clear evidence of cancer cell growth; cancer cells tend to develop a resistance to chemos so waiting until they are growing strongly means (according to my CNS) there is the best chance of maximum kill/murder! Hitting a few means one or two that survive have resistance so they replicate that resistance. They felt by waiting for evidence of growth would, in the end, buy me more time.

Even though I did have all that second line chemo, I’m pretty sure my long remission (5years now since last infusion of chemo) is because all the cancer was removed by the surgeons.

Hope this helps with your deliberations.

Warmest wishes

Lesley

IrishMollyO

in reply to Hidden

Hi there

Having read Ruth’s post and the replies it looks like I’m existing on a wing and a prayer! My PPC recurred in my para aortic lymph nodes in 2016 after 5years NED. I was put on watch and wait from Feb to July of that year when I was rescanned . Surgery was not an option as it was considered too dangerous. I was given Carbo only when I really believed it should have been Carbo/ Taxol . It as now recurred in the same lymph nodes with the added gift of a lung nodule ! I am again on watch and wait until early Oct to decide next step.

Which brings me to your question on Arimidex . I was coasting along until last Dec when my GP fast tracked me to the nearest Breast unit only to find I had a totally unrelated Lobular Breast Cancer . A mastectomy followed . I managed to skip chemo as I had the right score in the Oncotype test and went straight to 28 sessions of Radiation. When I finished I was put on Arimidex as my BC was oestrogen driven. It’s an Aromatase inhibitor also called Anastrozole . I did wonder if it also helps with preventing OC and PPC recurrence. I have read quite a few posts on here where women have been put on Letrozole which is also an Aromatase inhibitor . I was going to ask to change over to that one until I read posts that said OC women were also put on Arimidex.

I obviously wasn’t on it long enough to prevent the latest recurrence but I’m really happy to keep taking it . I hope my long reply makes sense to you and good luck in the future. I will post my progress from time to time if it helps other women,

XXX

💚💕

Hi, thanks for getting back to me. Good to hear you managed 3yrs in remission after single LN taken out. Sorry that you had to go through chemo again, but sounds like it has worked well for you. Can I ask what stage were you when first diagnosed and was it high grade serous and was 2015 your first recurrence?

Yes I think sometimes surgery is too tricky if it involves the aortic lymph node. (One junior doctor told me after surgery how lucky I was as it was very dangerous surgery and you only have a minute to bleed out time if the aorta vein is cut. Think he would probably have got into trouble from senior doctors if they knew what he said, but I couldn't help but like him as everyday while I was in hospital he would give me a big smile & tell me how lucky I am.) Sorry I can't help with info re Anastrazole, never heard of it. Might be better to post separately as people will probably only come on this thread re para aortic LN.

All the best for the future and a long, long remission!