to have or not to have lymph nodes removed

Sounds like you have an invasive component with your LCIS.  What is the pathology of your positive nodes?  Is it micromets or something larger?  I had a 2cm IDC that was close to the underarm and had a micromet in the SNB.  Both my surgeon and onc wanted the nodes out.  5 weeks after my BMX I had a complete ALND with 11 more nodes removed.  There was a 6mm node further up the chain, so this was much larger than my SNB - which is unusual - and this did not show up on the MRI I had done pre-surgery.  I have no range of motion issues but I definitely recommend post-op PT (from a LE-certified therapist) to help with this, it is not written in stone that  ALND always causes range of motion problems.  I do not have residual numbness but it did take a while for those nerves to regenerate, probably almost a year.  I do have very mild LE but I had very serious swelling during chemo, which I believe was the source of the LE.  This did not occur until 6 months after the surgery.  If you have had a SNB you do already have lymphedema risk - of course, more nodes can mean more risk.  While I don't enjoy dealing with lymphedema I felt the risk was worth removing the cancer, I did not want radiation (hence the BMX when I was a lumpectomy candidate) and was not confident that chemo would completely eradicate the cancer. Many people choose radiation to deal with this, and statistics bear out the effectiveness, but be aware that it too can cause lymphedema.  Good luck, I know this is a hard choice. 

There is research to indicate that an axillary node dissection does not change the outcome (after finding positive sentinel nodes) if you have adjuvant treatment. The lymph nodes are encased in a fatty tissue so you won't know how many are removed until the path report. There were 13 nodes found during my level 1 dissection, none positive. The range of motion and lymphedema risks are another issue. I had a frozen shoulder but with pt and exercises at home I am just about back to full range of motion, after less than a year since my bmx. The lymphedema risk will never go away but you just have to take precautions and hope for the best. I do MLD daily and monitor my arm closely but I still exercise and use that arm quite normally. Good luck with whatever you decide. Caryn

Your cancer has demonstrated that it knows how to move, and 100% of your nodes removed were positive.  It is important to factor this into your decision.  What is the advice from your oncologist?

I had neoadjuvant chemo and still had 10 positive nodes, so I would not be comfortable leaving the nodes in even if followed by chemo.

The reason both my MO and BS insisted that the nodes come out is demonstrated by the post by mary625.  I was not willing to take the chance that chemo/rads would not do the job completely.  I also echo what cp418 says about exercise and stretching - if you can get in to see a LE certified physical therapist prior to surgery for an arm measurement, and then after surgery for instruction in the correct kind of exercise, so much the better - if you decide to have the ALND.

it's a really interesting questions.

my surgeon had said that i would have full alnd if the snb came back positive... but another friend of mine is wondering about these questions because she is a musician and very nervous about range of motion / lymphedema issues.....

Here's one paper that is relevant:

jco.ascopubs.org/content/29/34...

In conclusion, on the basis of the results of Z0011, a significant proportion of patients with one to two positive SLNs and BCS can safely forego ALND. The majority of these patients do not need to be subjected to the short-term and long-term morbidity of ALND. The multidisciplinary approach of adjuvant systemic therapy and WBRT is important in reducing the risk of locoregional recurrences. Until additional data are available, including analysis of the Z0011 radiation fields, it remains our policy to assess the risk of microscopic involvement in the regional nodes and to target nodes that are at significant risk in the radiation treatment plan. Table 1 summarizes a suggested approach for radiation field design. Using this approach, we will provide patients with excellent locoregional control and, in combination with surgery and adjuvant systemic therapy, optimize the patient's probability of cure. The data from Z0011 also give additional justification for the use of BCS for patients with positive SLNs. The potential for avoiding ALND, coupled with the high rates of locoregional control that are associated with BCS and WBRT, should make this approach more appealing than mastectomy for most patients. 

Later in that same paper:
The radiation oncologist, however, has historically relied on ALND findings in the design of the radiation treatment fields7; the number of positive nodes provides information concerning the risk of involvement of the level III/supraclavicular (SCV) nodes. When this risk is clinically relevant, radiation oncologists commonly treat the level III/SCV region with an SCV field.8 Typically this is used for patients with four or more positive nodes and selected patients with one to three positive nodes. With computed tomography–based planning, this involves contouring level I through III nodes, which ensures adequate radiation to the target nodes that are at risk. Although the combination of ALND and axillary radiation increases the risk of lymphedema,8,9 minimal morbidity is associated with radiation to the undissected level III/SCV region or to the undissected axilla.3,7


anyway, from this paper, it appears that the radiation treatment of the auxiliary nodes does not result in as high a risk of lymphadema, like radiation plus ALND does....and perhaps radiation can do the job....

definitely food for thought.

I just went throught this same situation and both my PS, BS, MO, and RO said study didnt apply to me because I have macrometastasis not micro and I have extranodal involvement so its outside of the nodes in the tissue. They also said that chemo before surgery wouldnt help me because ILC isnt as chemo sensitive.  Ask your doctor what his reasons are for pushing the ALND on you. I just had a bmx on the 9th with 3 nodes removed and 3 positive. I will now have to go back for the alnd and I didnt want to either. And they said I have to get chemo,  rads and the hormone therapy or anti hormone... whatever its called lol. I went to PT today to get my measurements and exercises. Hugs to all as we go thru this. I just wanted you to know that these words that I skipped over  in my report were very important to my treatment.