Hi - I was not diagnosed with any node involvement, but my story might help in some way. I had a large tumor so started neoadjuvant chemo right away, immediately after being diagnosed. None of the scans had shown any lymph node involvement, and the surgeon had not been able to palpate anything. After the chemo, I had a left sided mastectomy and the surgeon took two sentinel nodes that showed no cancer. He opted not to do more because I do have lymphedema and he did not want to make the situation worse. When I went for radiation however, the radiologist seemed disturbed that they had not done the ALND and she took it up at one of her meetings with a team. All of the surgeons on that team said they would have done the ALND and they all seemed to think that the surgeon had failed in some way. He and I discussed it, he told me he could still do it and that there were some other possibilities also, like an ultrasound and something called a "reverse sentinel biopsy" where they start up near your wrist I think he said, with the dye and then go up your arm to see what might show. I opted to not do any of it, since the sentinel node check was clean and because I don't want the lymphedema to get any worse either. I had radiation to my underarm area, along with the rest of things, and the radiation itself did make my lymphedema somewhat worse, so I am actually glad I never went for the ALND. The other doctors that I see do still make seemingly snide comments about how "since you didn't have the ALND" blah, blah, blah. Well, in my case, I just don't think it is going to be a make or break issue, but the doctors (especially the younger ones that seem much more data driven) seem to want to know exactly if there are nodes involved and exactly how many. My surgeon was in his 60's (just retired) and based his actions on over 30 years of experience. I went with that and many of the hospital staff who knew him well, said that there was no question whose opinion they would go with if they were in the same situation - his.

Since my surgeon's recent retirement, I saw his partner for the first time, for a check up. I have been "transferred" to her I guess you would say. She noted that there was no node involvement after the neoadjuvant chemo and I told her how all of these other doctors thought I should have had the ALND. She immediately said, "Well, he [the surgeon I'd had] didn't want to make anything worse, I'm sure!" and that was indeed the case, so apparently she "gets it" and doesn't think it was necessarily a wrong decision to not do the full deal. Once in a while I wonder if there is any cancer in the nodes, but I basically do not regret my decision at all and I'm glad for what I see as my surgeon's wisdom from experience. Again, I just don't think it will be a make or break issue in my case, no matter how things go in the future.

With some positive nodes, you might want to consider the full ALND, but there are other things to consider too. I think I read a study somewhere months ago that said it really didn't seem to make that much difference in anyone's ultimate outcome or overall survival. It seems like many of the doctors, and again, especially the younger ones, just want all that data and information or they feel a bit lost.

Best of luck to you with whatever you decide to do! So many of these choices are so, so hard.

With 75% of the lymph nodes taken being positive it sounds like you should go back to at least get all Of the level 1 nodes out. Everyone makes the best choice for themselves but you’re young so I’d encourage you to do all you can. MD Anderson has a calculator that tells the probability of finding more positive nodes based on the size of your tumor, grade and # of positive nodes compared to total removed. That may be helpful. I couldn’t get it to link but you can google the words below. Good luck in whatever you choose

Breast Cancer Nomogram to Predict Additional Positive Non-SLN, without Neoadjuvant Chemotherapy

Hi Bre0314,

I had discussed the situation with my BS prior to my lumpectomy that if the sentinel nodes were positive to just go ahead and do ALND. Well he tested 3 sentinel nodes and they were all positive so I had a level 2 ALND. But when the pathology report came back all of the ALN were normal.

I don’t regret the ALND I am happy with the choice I made. But I’m also lucky to not have lymphodema.

You do what’s best for you.