Lymph node removal.

I am a little different to most on here that im a criptic breast cancer so the first sign of mine was a enlarged lymph node, i know now that several are involved as via the mri scan, they are keeping my nodes as a tumour staging at the moment. the nodes are responding well to treatment and may well have a full response.
The dilema i have if i have a full response should i have full node removal which i really dont want to have. Latest research is saying that it may not be necessary and that survival rates between those that do and those that dont are barely any different. Re acurrence rates between the two are about 1% so am just looking for differing views and if anyone on here has had there nodes left after having chemo to shrink or get rid completely.
The second opinion from the Royal Marsden said it may not be necessary but they still recommend full node removal in general.
Thank you in anticipation.

Not been in your situation as biopsy showed I had cancer in my nodes so all were removed - 15/20 found to be affected. It wasn’t that bad - OK I have to be careful due to lymphodemia risk, but the op was OK - in some ways the WLE and node clearance were the easiest parts of my experience.

Purely personal - I hate and fear this disease so much I’d do anything to minimise, even by just 1% - it’s chances of coming back - so I’d go for removal - but thats just me maybe - see what others say

Good luck whatever you decide

Nina

Hello I’ve come across different views of professionals on full clearance of nodes too. it can be very worrying for us patients as the final decision is always down to us - Gee thanks !!!

In my case the WLE and SNB (sentinel node biopsy) was done , with me knowing that further surgery may be necessary if they found cancer in the nodes . We werent expecting to find any as I had tubular BC which is less likely to spread. Well, mine had , to 2 out of the 3 sentinel nodes removed. the 3rd was negative as were 3 more nodes in the next level that they also took out as found them easily. The second SN had micro metastasis and the first had bigger mass more than 2mm.

This removal of more nodes than the sentinel ones during WLE (4 is recommended by some research) gives an even clearer picture of how much the cancer may have spread and helps to inform further treatment decisions. But as I understand it, even negative nodes in the second level doesnt guarantee there has been no spread to rest of the body - hence chemo recommended if ANY cancer found in any nodes. as well as radiotherapy - to breast and the armpit and higher up too to treat anything that may be left after surgery.

I was worried because my hospital did not recommend more surgery and full axilla node clearance. NICE guidlelines say if anything found in nodes then do a full clearance - but that takes no account of the other factors already known ie stage , type etc etc found from the biopsies. I know this to be standard practice at some big London hospitals like Barts - where lots of research done. So when my little provincial hospital is recommending something different , I worry. But , all things considered, low grade and stage, being small in stature (Onc said being small I may not even have any more nodes !!!). - decided to go with all treatments recommended and not have a 2nd op of full clearance. Not sure that helps - this is only my experience. I didnt have any scans other than mammo and ultrasound by the way, first sign I had was a thickening and slight lump in side of breast. Kirsty

Many thanks for your replies please keep them coming, its hard as i dont have that tumour that they can stage but i am HER2 and it is aggressive so they know i have a strong chance of a return at some point. However all my scans are completely clear for anywhere else in the body. Thank god for chemo and Herceptin.
I think my situation is different from others that they already new from a needle biopsy that cancer was there and nothing in the breast to operate on. I suppose in one sense it is lucky no surgery yet. I despair of having lymph nodes removed i breed dogs and horses and need my right arm to do the strong work i need to do. I suppose if it happens ill adapt.