Para Aortic LN Surgery Update & Question

[ruthg55]

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

[Maus123]

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

[ruthg55 in reply to Maus123]

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

[ruthg55 in reply to lesleysage]

Hi Lesley ... many thanks for sharing your story. So lovely to hear about your long remission. It is so re-assuring & I am so happy for you.

Yes, I tend to agree re holding off on chemo and everything I've read seems to suggest the same. My first time round with chemo - the day I started - my CA125 had gone down to 15 (I had NED at that stage), but I went with the treatment plan & to be honest I often wonder about that if it was actually beneficial. Still, I suppose what's done is done. This time I'll stay on observation & hope that I have as good an outcome as you

All the best .... Ruth

[Lyndy]

That’s great for you! Really interested as I have recurrence in 3 LNs two in abdo and one in my neck....MDT may consider surgery after next scan...so pleased to hear about your experience xx

[ruthg55 in reply to Lyndy]

Thanks Lyndy. Good luck with your next scan - hopefully surgery might be option. All the best xx

[Hidden]

Ruth, hope all continues to go well for you and that you have long-term remission. Yes, in 2015 I had a single lymph node taken out with NED elsewhere and I did not have chemo. Then in 2018 I had the aortic lymph node involved and surgery was not an option so I took chemo and am in remission again. My Onchologist is suggesting I take 1 mg Anastrazole (Arimidex) daily. Has anybody on this forum been on this drug for OC reoccurrence.

[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

💚💕

[ruthg55 in reply to IrishMollyO]

Hi there IrishMolly ... thanks for your reply. Sorry to hear you are back on watch and wait until October but have everything crossed for you that it turns out you have another long remission. I was also told if chemo is needed it wouldn't be Taxol, but another combo mix of carbo & another agent - and in fact might just be carbo. So I think this is common. Please keep posting your progress & I wish you all the best. xx

[IrishMollyO in reply to ruthg55]

Thanks Ruth

As I didn’t have surgery I didnt think my,experience would have been much help . All our replies add to knowledge of this vile disease I suppose . I so much admire the many women who went through surgery and apart from the mastectomy i escaped the surgeons knife ! That is why I pray that I will always get the right chemo. I suppose I was lucky to skip it for BC which means I should tolerate it well next time.

I want to wish you all the best too for a good outcome. Take care

XXX

💚💕

‘

[ruthg55 in reply to IrishMollyO]

Hi again IrishMolly .... absolutely agree that all our knowledge/experience helps each other and this is such a good site for doing just that. You're right - I'm sure you will tolerate chemo if/when you need it. I admire woman, like you, that not only have had to deal with OC but BC too. Take care and all the best for October xx

[ruthg55]

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!