I was just going to post about exactly the same thing!
I've had neoadjuvant chemo and left mx. At dx biopsies of my lymph nodes came back inconclusive, although because one was always palpable and some enlarged on MRI, I always assumed I had positive nodes. But because of the inconclusive biopsies my onc wanted me to have SNB before surgery, then if necessary ANC along with the mx so as not to delay rads. The surgeon disagreed and wanted to do SNB with the mx and then ANC afterwards if necessary. I was never happy with the false negative rate for SNB after neoadjuvant chemo (about 15% in some cases) so asked the surgeon to do ANC from the outset. He was reluctant, and we were still discussing it when I was about to go into theatre, when he agreed to do a level 1 clearance and if he saw anything suspicious to clear level 2 as well. After surgery the registrar said they had found 2 palpable nodes and the surgery notes said I'd had a level 2 clearance, so I thought I'd had ANC.
Yesterday I saw the onc to get my results. They had only 'sampled' 5 nodes (from levels 1 and 2). 2 were still cancerous (the 2 palpable ones). Apparently when asked in the MDT why he hadn't cleared more the surgeon said it was because I had been unwilling to let him! I was really annoyed as I had pushed so hard for ANC. The onc said the team have now recommended rads to the axilla to deal with any remaining positive nodes as I have to have rads anyway and he doesn't want them delayed by more surgery. He told me that rads and surgery would have 'similar results' in terms of outcome.
Whilst I am very annoyed that my wishes weren't taken into account in the first place, at least it's comforting to read here that some other teams are doing the same as I'd never heard of it before. I'm also relieved in a way that I'll never know how many nodes were positive as I don't think I'd cope well mentally if it were a lot, and my anxiety would probably do me more harm than anything else! I want to be able to move on now, as all through chemo I've been in a very bad place mentally and now I feel like I could move forward, but I don't want this to crop up in my mind in the future as unresolved either.
Would love to hear more experiences, especially from anyone several years down the line after this situation.
Thank you for this info GK, I had 4 nodes removed and had micrometastates in the first node but the other 3 were clear. Originally we thought all 4 were clear but further testing picked this up. I was worried I'd need a ALND which I was dreading but was advised by my surgeon that this wasn't needed. I'm starting chemo later this week and have rads after this so if there is anything lurking around (which they don't think there is at this point) then hopefully the treatment will zap it.
You may find this helpful. I was quoted this study whilst at the Marsden
Not a very helpful study for me as I have already had chemo prior to slnb but possibly for you. Bottom line is that its you taking the risk not your surgeon so keep reading and discuss until you get to a strategy you're comfortable with. Also take into consideration type of cancer - not addressed in this or other studies. I have triple negative which can be difficult to clear with chemo so may interpret the risks differently to someone hormone receptive.
I had one of 2 positive. Awaiting results on a third.
What a relief to find I am not alone!!
The thing about chemo and rads is how long you wait. I was 5 weeks before starting chemo and my imagination ran riot with the possible implications. I honestly believe that I would have been better off having full clearance straight off. The other thing for me was that I had been told that chemo would not be as effective for me since I had had it previously for a different cancer. I felt I was relying for too long on what might not be doing me much good.
Certainly from what others say on this website nearly everyone has full clearance after positive SNB. So obviously opinions must differ. It just does not feel right to me.
I wish you well with your treatment - I've nearly finished the radiotherapy and am trying to move on!
I seem to be in a similar situation as you and have had a bit of a panic over the last few days. I had a grade 2 tumour which was removed with wle and sentinal node biopsy during which they removed 5 nodes, 2 of which turned outto be cancerous. They decided not to give me any more surgery but have explained that following chemo I will be having radiotherapy to the breast, armpit and collarbone. The onc says that in his opinion results for a full clearance and someone only having rads are the same. Like you I have tried to find more info on this procedure but still keep coming up with the story that if cancer is found in the lymph nodes they are then all removed. Lin
I have posted about SNB before and everyone seems to have full axillary clearance if any nodes are positive apart from me! I had only 2 nodes removed both of which were positive but was just referred for chemo and radiotherapy. I have been unable to get an explanation of why and frankly still have panics that I probably had more affected nodes left behind and what this may mean for the future.
I wonder whether there are contraindications for SNB? Have read on another website that it is not right for over 50s, tumours larger than 2cm, or women who have had previous chemo or surgery since both of these can affect the normal flow of lymph.
I would really like to hear from anyone else in my situation.