Axillary Lymph Node Dissection OR Axillary Radiation OR Both??

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I had a lumpectomy and sentinel lymph node biopsy (SLNB) and am just finishing chemo. The SLNB found cancer in one out of four lymph nodes removed and I am now faced with the decision of whether to have a full axillary lymph node dissection (ALND) OR radiation to my axilla OR both. I understand that there has been recent research to show that radiation to the axilla may be just as good as having an axillary lymph node dissection, however, the women in that particular study were all over 50. I am 39, was diagnosed at 38. I'm wondering if any more young-ish women have been faced with the same decision and how you figured out the best course of action. Any insights would be appreciated. I'm having a really hard time with this decision. I have conflicting opinions between by medical oncologist my radiation oncologist and my surgeon. Thanks.

Comments

  • SaturnRing
    SaturnRing Member Posts: 36
    edited October 2012

    Hi there,

    My case is almost same as yours, excepting, I had only isolated tumor cells in the sentinal node. I was given a choice to go for radiation (even though I had mastectomy) or undergo ALND.

    The way my BS explained ALND to me is that, similar to having good margins in the breast tissue, it is important to have good margins in the lymph nodes as well. But in my case since it was only Isolated tumor cells, and when he had opened me up, he didnt see any lymph nodes to be suspicious. So he himself said I would probably be better off with radiation than ALND.

    My RO, during my initial consult made it very clear that the normal times when they do Radiation for a person after mastectomy is if the tumor is over 5 cms or if 3 or more lymph nodes were found. and she said in my case she might be over treating me, but given my age and my triple negative tumor she wanted to err on the side of caution.

    So I am starting my radiation tomorrow. Hope my case gives you some idea.

  • Lou10
    Lou10 Member Posts: 332
    edited October 2012

    teegee -

    I made the decision not to have the ALND surgery ... to have radiation only. I was borderline in terms of the criteria used in that study as I had extranodal extension of the cancer in both my sentinel node and an intramammary node (basically the cancer had broken through the nodes) ... those were the only nodes removed so I was 2/2. When I first saw my MO, he  said my pathology pointed to extensive node involvement and I would need both ALND surgery and lymph node radiation. He said the best way of getting rid of cancer is to remove it ... to cut it out. After chemo, my surgeon booked the surgery. My RO then took a look at my file and recommended radiation only. She felt I did fit the criteria of the study and the risks of having both lymph node surgery and radiation outweighed the benefits. She said she had discussed it with my MO and he was fine with it (this was the 11th hour so I didn't have a chance to talk to him). I went with her recommendation.

    Sometimes I wonder if I made the decision because I was exhausted from chemo and didn't want another surgery before radiation. That was certainly part of it, but I also felt that what my RO said made sense (and of course it helped that she had talked to my MO).  

    Sometimes I worry about the fact that the cancer in my nodes was not cut out, but I don't lose sleep over it. And I'm glad I don't have as high a risk of lymphedema as I would have had with both the surgery and radiation.

     

    It's a tough decision, and I wish you the best with whatever you decide.

     

  • teegee
    teegee Member Posts: 2
    edited October 2012

    SaturnRing, thanks for your reply. So, you are getting radiation on your axilla? And, can I ask how old you are?



    Lou10, thanks for your input too. Can I ask your age too?



    My RO is recommending radiation to my axilla whether or not I have the ALND and both my MO and my BS think that having radiation on the axilla after the ALND is unusual and will cause lymph edema. Do you anybody who has had both surgery and radiation to the axilla?

  • SaturnRing
    SaturnRing Member Posts: 36
    edited October 2012

    Hi Teegee, I am 34 now, 33 during diagnosis. I am having Axillary radiation, the standard 33 rads which includes the boosters etc.

    Yes, having rads on axilla after ALND does INCREASE your risk for lymphedema, there is a section this board for that and you might want to bounce your question on lymphedema over there.

    Wishing you well :)

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2012

    Ladies - I had a positive sentinel and ended up having ALND but no radiation.  The additional node found was considerably larger than the sentinel so I am happy that it was removed surgically - my MO and BS were insistent on this and they are both forward thinking, but this is a personal decision.  I am including a link to the Z11 trial which compared radiation to the axilla to ALND.  Discuss this trial with your docs:

    http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=47842

    I believe that this trial is a part of what set the change to treatment guidelines (NCCN patient guidelines for breast cancer) and here is a link to that information also.  Look for the description that best matches your individual diagnosis.  Turn the page by clicking in the bottom right corner:

    http://www.nccn.org/patients/patient_guidelines/breast/index.html

  • Rose_d
    Rose_d Member Posts: 144
    edited October 2012

    Teegee,



    I had 2.5mm in the sentinel node which they discovered during my BMX. I wasn't given the option of whether or not to do an axillary dissection they took 17 more nodes whine the sentinel came back positive (those were all negative). So I can't tell you about whether you should do the dissection or the radiation (I haven't done the research). But I will say that I would not do both if I were you.



    I had 4 opinions about whether or not to do radiation (the data on local recurrence for someone with 1 positive node is all over the place). The opinions I got varied from absoutely yes to it could go either way but I would do it to it really could go either way you decide to don't do it.



    But they all agreed that they would NOT treat the axilla since I had had 18 nodes removed. They didn't think it was necessary and said that my risk of lymphadema would go up to 50%! Given that I am only 40 that is way too high a risk.



    In general I am a proponent of erring on the side of over treating. I need to be able to sleep at night and know that I did everything possible to keep this from coming back.



    But I also believe that radiation oncologists are (understandably) focused on overall recurrence rates NOT with individual results or long term side effects. That's not how they measure success - they measure success based on how many of their thousands of patients have a local recurrence.



    I would get another opinion from another RO. And agree this is a tough decision. Whether or not to do radiation was the toughest decision I have had to make through this mess of a mastectomy and chemo. I have 7 more treatments left. Still hoping it is the right decision!



    Good luck to you,



    Rose

  • sundermom
    sundermom Member Posts: 463
    edited October 2012

    I was diagnosed at the age of 37. I had the SNB at the same time as the BMX. They looked at the nodes while I was still under and determined that the first two were cancerous. At that time my BS performed a complete AND, so when I woke up everything was done. I did, however, go on to have radiation of the axilla. I was told I was in a gray area for radiation because usually 4 nodes is the magic number post BMX. We opted to go for it and I'm glad I did. I feel like we threw everything possible at the BC and it gives me a sense of comfort. Feel free to PM me if you have other questions.

  • Lou10
    Lou10 Member Posts: 332
    edited October 2012

    teegee - I'm in my early 50s, and the study was released days before I met with my MO. By the time I was finished chemo, it was changing practice where I live.

    Even though I'm older than you, I wanted to tell you my experience because in other ways I didn't seem to quite "fit" the study criteria. MY RO felt the same way yours does: that I should have radiation even if I have ALND surgery. It may be because radiation can cover a larger area and more lymph nodes (not just the axillary), but I'm not sure as I didn't ask. 

    Edited to add: No one in my team (RO, MO, surgeon) suggested ALND surgery only. It was either both surgery and radiation, or radiation only.

    Don't hesitate to call/see your RO and discuss your concerns. It's an important decision and you have to do what feels right for you. 

  • Rose_d
    Rose_d Member Posts: 144
    edited October 2012

    teegee,

    I forgot to add - I am having radiation of the breast area and superclavical area.  Just not the level 1 and 2 lymph node area which is where the nodes were removed.  My RO tells me that because we are radiating those areas and not the axilla my risk of lymphedema goes up 2% over the risk that is already there from having the nodes removed.

  • wildrumara
    wildrumara Member Posts: 450
    edited October 2012

    I know our stories are not completely the same, but I thought I would share my story with you.  I was diagnosed last year at 42.  I had a BMX with two positive nodes (barely crossing into the metastatic threshold).  Because I had neoadjuvant chemotherapy and still had the positive nodes, my breast surgeon did an ALND for a total of 20 nodes removed.  Only the two sentinel nodes were positive.  My MO wasn't even going to send me for a consult with an RO, but because of the research I had done on this site and other sites, I told her I was interested in talking to someone.  I got two opinions. 

    The first RO from my team recommended no chemo.  I had small tumors, excellent margins, no LVI, but did have the two positive nodes.  He felt the risk of radiation was not worth the benefit to me, but that ultimately it was my decision.  He said he would radiate my supraclavicular area if I wanted him to though......but he felt it was not necessary!   He did say that if my tumor was larger, or if I had LVI, or poor margins, then he would have recommended it, but besides the two nodes, I had no other negative prognostic indicators. 

    I then went to see another RO at a competing hospital across town.  He told me that they are radiating premenopausal women with positive nodes.....period. Even if they had an ALND ,negative margins, no LVI, etc... That didn't sit too well with me though?? 

    I spent many sleepless nights making a decision.  The RO from my team who recommended no radiatio spent a lot of time with me on the phone and in emails explaining to me why he recommended no radiation.  He also corresponded with my breast surgeon who also said he would not "irradiate me" after the ALND and only 2 positive nodes.  

    I decided to stick with my teams decision and did not do radiation.  My situation is a little different because I had a BMX and I had a lot of concerns about potential problems with my implant on that side too if I had radiation.  

    Also,  IMO, I truly believe that most ROs are going to recommend radiation......that is what they do...they radiate.   I will admit from everything I've read, that there has been a shift in philosophy in the last few years after a few studies coming out have shown a decrease in recurrence with women having radiation with 1-3 positive nodes.  Most of the larger studies done for multiple years (those from the NSABP) recommend radiation for women with 4 or more positive nodes only. 

    But, as someone said above, you have to do what is best for you......what will enable you to sleep well at night and move on to complete healing, both physically and mentally! 

    Please correct me if I'm wrong, but I thought somewhere I read that you can only have radiation once.....??   So, if you did have a recurrence at some point down the line and have already had radiation, you would not be able to have it again....?? 

    Again, I had a BMX you had a lumpectomy, so there is a difference....but I would take some time to research and get another opinion.  Best of luck to you in making a decision!    

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited October 2012

    I was 50 years old when I was diagnosed with early-stage IDC and positive sentinel node.   Seven axillary nodes were sampled, as well; all were negative.  Clear margins, no LVI, segmental (wedge) mastectomy (i.e., "lumpectomy").

    I elected  to have axillary radiation based on the results of a new (at that time) study which concluded that - even for early-stage women - regional node radiation (i.e., axilla, shoulder, neck) provided a clear 2% survival advantage over women who did not have it.  My RO said that - with just the positive sentinal node - I probably didn't need it, but if I wanted it, he would do it because the study results were so definitive.

    Sometimes being early-stage with minimal node involvement makes our decisions are little more difficult, doesn't it?  Both my MO and my RO said my pathology put me squat in the middle of the dreaded "grey area": maybe I needed chemotherapy/radiation, maybe I didn't, they couldn't be sure because I was so "borderline" everything.  Knowing me, I opted for both chemo/radiation just for the peace-of-mind.

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