to have or not to have lymph nodes removed

optimist3

Actually, I was diagnosed with ICIS with lobular features. I had a lumpectomy and 2 sentinel lymph nodes removed. Those 2 nodes came back positive. Now, the surgeon wants to remove ~15 lymph nodes under my arm. I am very worried about the limited range of movement I will have with that arm and the possibility of lymph edema.

My question is: shld I let them remove those lymph nodes or just take a chance with radiation and anti-estrogen drugs?

SpecialK

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. 

kira1234

optimist3, You don't have LCIS you have ILC.

Have you had the ocotype test done? What you Dr. is trying to do is stage you at this time.  The number of nodes involved is part of the staging. I know most Dr's are still doing additional nodes when the 1 or 2 done come back positive. I really do understand your concern. With the nodes involved he is trying to decide treatment. It most likely means you will need chemo.

exbrnxgrl

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

optimist3

the cancer in the sentinel nodes was only 1 mm and 1.8 mm which is VERY small, not even 1 cm, and yet ....

SpecialK

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?

kira1234

I have to agree with SpecialK. If you ahven't seen your oncologist yet that would be a good idea to get his/he ideas as well. I know my BS would have taken more at the time of my surgery if it had been positive, and I know he would have strongly suggested I have more done if the final path showed positive for cancer.

mary625

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.

cp418

I had 18 nodes removed plus axillary radiation in addition to chest rads.  I think what helped me after surgery and drains removed ---- was stretching exercises.  When I started to get 'cording' under the arm I did my stretches in the warm shower until it got easier and no pain was felt.  The daily exercise and movement was important to regain movement and help with circulation for me.  Today I have complete mobiltiy of this surgical arm.

SpecialK

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.

Momine

Discuss with the onc, as others have suggested.



I had 22 nodes removed on the cancer side. I did have some swelling during chemo and rads, but with care and PT (my PT lady was an absolute sanity saver) it is now a minor problem, knock wood.



I have not had any mobility problems and I am almost a year out. In the beginning you have all sorts of fun stuff going on, since it IS a major operation and affects a lot of nerves and other stuff. But I have been doing my PT, my stretches (every single day and often several times a day), daily walks and as of recently going to the gym every other day. Right now at least, I feel pretty good.

BikerLee

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.

coraleliz

You could probably find doctors that say you should skip the ALND. My MO sent me back to the BS to have the level 1&2's removed. My BS didn't want to remove my nodes because of the study mentioned above. She sent me to the RO, who initially told me I should do what my MO suggested because he believes it will provide information needed to treat me. Then my BS suggested I get an "academic" opinion from Dr Guliani(the study's author). Before that appt happened my RO called me out of the blue.He told me he changed his mind after rereading the study. He felt it fit my situation well & that RADs would be a better way for me to go. I was told the risk of LE would be 30%(lifetime) with the ALND & between 5-10% with RADS. So now I had 2 docs saying "no" to the ALND & 1 saying "yes".

I also didn't want another surgery. That armpit was still sore from my MX/SNB. I'm not sure my BS would have done the ALND on me, so maybe I would have had to find another BS.

 Perhaps grade & other tumor characteristics should be considered here. It was a really frustrating time for me, I hope your treatment plan comes together soon.

melmcbee

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.