Rejecting surgeon's advice to have axillary nodes removed

[sask]

Hope that helps a bit chloe5 ? X

[sask]

Hi ,i had my op on sept 13th for stage 1 grade 3 lobular bc ,i opted out of the posnoc trial as up to that point it was believed that my nodes seemed either unaffected or very minimal  and realised that i wouldnt prob need a full clearance , turns out i was right as only the 2 sentinal nodes and 1 other did have cancer in them and were removed .i am having problems with a seroma that is being drained for a 2nd time tommorow but at least they took away the cancer ,i also have to have gene testing on the 10th nov which added to me wanting anything that was found removed asap ,i feel less like a ticking timebomb now😊.l would speak to the onc /surgeon about how likely a full clearence would be for you as it poss wont come to that .i realise different bc  approached differently but dont be affraid to ask what is best tailored for you .xx

[Ms Merton]

I'm so sorry to hear your story Daisy.  My condolences.  Thank you so much for sharing this information which shows the risks of not having ANC even if you have had chemo.  I had a number of live tumours in my lymph nodes removed after chemo which had not shown up on scans and not been cleared by the chemo. So thankful now I had the surgery, although we all hope they will find better solutions in due course because of the lymphoedema risks. 

[Daisy1975]

My mum had axillary lymph node involvement at diagnosis. They did chemo, a lumpectomy, sentinel node removal (post chemo) then radiation to breast. The lymph nodes that they removed were clear - so they were happy that the chemo had worked and they wouldn't do axillary clearance due to lympodoema risks. Apparently SNB following chemo has been shown to be as effective. Sadly they took the wrong lymph nodes (original lymph node was found to be present - they chemo had shrunk it)and mums cancer flared back up within a year. It spread rapidly and I lost my mum a year ago.
Sorry for the negative story but I wish my mum had the opportunity for axillary clearance - she may still have been here xx

[Ms Merton]

This is the standard protocol in the UK (both NHS and private): if node metastasis can be detected using scans and biopsies prior to surgery, then a full axillary node clearance will be recommended and a sentinel node biopsy is irrelevant. If pre-op scans do not indicate any lymph node involvement, then a sentinel node biopsy will be performed at the time of the lumpectomy/mx.  In some hospitals, the sentinel nodes will be checked while you are under anaesthetic and if significant metastasis is found, then a ANC will be performed there and then.  In other hospitals, you may have to go back for an ANC later. If the sentinel node biopsy shows only tiny amounts of lymph node involvement (micro-metastasis) in one node only, you may be offered radio as an alternative to ANC.  If you have lymph node involvement, you will also need to have chemo.  I was initially resistant to having an ANC (I had positive lymph nodes identified pre-op) but I am now very glad I did because they removed more positive nodes further up the chain.  Hope that helps. 

[Strudel]

I'm not sure what your position is? Sentinel node removal only (plus any palpable nodes)  is the approved pathway for anyone believed to be node negative. It gets a lot more complicated if they suspect node involvement. 

[Jill1998]

Hi Chloe ,have you had cancer in your sentinel nodes confirmed ? There was and may still be a clinical trial ongoing at various hospitals in the UK where you are offered alternatives to auxiliary clearance e.g. radiotherapy to the arm pit .My hospital was taking part and I was told they were looking at how effective alternatives to node clearance were.

[Chloe5]

Hi,

i have seen a lot of evidence (Z11 and Baylor for example) that ductal breast cancer has very low inceidence of axillary node metasteces and indicates sentinal node clearence is sufficient when doing a lumpectomy. However most surgeons in the UK want to do axillary clearence. I'm trying to find a sugeon who is happy to do sentinal node and lumpectomy only. Has anyone used this approach or is contemplating doing so and found a willing surgeon?

Thanks!

Chloe