Additional Lymph Node Dissection after finding micromets?

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Elle2
Elle2 Member Posts: 71
edited November 2021 in Stage II Breast Cancer

I recently had a mastectomy and sentinel lymph node dissection surgery with reconstruction. When pathology came back, the lymph node was found to have micromets. I've been struggling with the decision of wether to push for an additional surgery to remove a few more lymph nodes to be sure all cancer cells are gone. My surgeon took my case before their monthly board and the recommendation came back against additional surgery for fear of lymphedema. However, the fear of leaving cancer cells behind almost outweighs the possibility of lymphedema. Has anyone else pushed for a second surgery to remove more involved lymph nodes, if so, was the result worth it for you? Did you develope lymphadema as a result? Thanks for any response and for helping me with my decision.

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  • moth
    moth Member Posts: 4,800
    edited October 2021

    is radiation your other option?

    "axillary regional nodal irradiation after mastectomy/BCS OTOASOR (Optimal Treatment Of the Axilla - Surgery Or Radiotherapy), AMAROS (After Mapping of the Axilla: Radiotherapy Or Surgery) could control the regional residual tumor burden when the SLN is positive and an ALND is omitted. "

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC64138...


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  • Elle2
    Elle2 Member Posts: 71
    edited October 2021

    moth - excellent study information, thank you. My issue is that I already had whole breast radiation in 2008, so further radiation is off the table. This is the main reason I am strongly considering additional lymph node dissection surgery.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2021

    elle - I had a lot of imaging prior to surgery - mammo/ultrasound/MRI, in addition to several physical exams that included palpation of the entire axillary area. None of the exams or imaging showed anything of concern in the axilla. During my bi-lateral mastectomy with placement of tissue expanders the cursory exam of the sentinel nodes (from both sides) showed no cancer, but in the lab later isolated tumor cells (ITC) were present on the cancer side SNB. Because I was Her2+ my oncological surgeon and medical oncologist both were adamant about ALND. My surgery was in 2010 and that was the time period when there was some shifting toward less ALND and more radiation to treat IST or micromets in the axilla. My surgeon was not a reactionary type, had been the chief of surgery at a NCI center, and was up on all the latest technology - but he was still insistent on ALND. This turned out to be the right choice as I had a much larger area of cancer further up the chain of nodes. This is an unusual presentation, but I know I am not the only one on this site who has had this happen - member LeesaD has a very similar story and she had a low OncotypeDx result I believe, so unlike me was not initially destined for chemotherapy regardless of what was found. As to the lymphedema question - yes, I do have it after ALND, but I also have it on the non-cancer side where two nodes were removed. It is well managed, mild, and aside from some annoying precautions doesn't really cause too much of an issue, but I know I am fortunate in that regard. If given the choice I will take it over remaining cancer the size of a stage 1 breast lump in my axilla any day of the week. Wishing you the best - I know these are hard decisions.

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  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited October 2021

    Elle2, I had 2 out of 5 nodes positive and the BS didn't think I need to have other nodes removed. The board decided no chemo and no radiation. It makes me nervous that I didn't insist to have other nodes removed. However, once the cancer cells are out in nodes, they are out in the body through lymphatic fluid or blood and that's why we get anti-hormonal therapy. I hope they are right and I am wrong. If I was you I would ask to have other nodes removed.

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  • moth
    moth Member Posts: 4,800
    edited October 2021

    Elle, depending on your dose of previous radiation, repeat rads may be possible

    Reirradiation for Locoregional Recurrent Breast Cancer

    https://www.advancesradonc.org/article/S2452-1094(20)30370-5/fulltext

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  • Elle2
    Elle2 Member Posts: 71
    edited October 2021

    Moth - the link you sent responded with this error message:

    An error has occurred

    The page or action you requested has resulted in an error. Please go back to the previous page by using your browser's Back button, or visit the Home Page.

    This page does not exist

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  • mle42
    mle42 Member Posts: 151
    edited October 2021

    Here's the full link.

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  • Elle2
    Elle2 Member Posts: 71
    edited October 2021

    Hi mle42 - thanks so much for posting this link for me. It is an interesting study of reirradiation for second primary bc and was helpful and hopeful, especially regarding the locoregional effects and the lack of distant recurrence success. I am dividing my treatments between MDAnderson and VGP Cancer Centers because I chose MDA surgeons/radiologist but wanted to keep my original med oncologist. I think this decision also provides me with good perspective and options for my treatments. I am talking with the radiation oncologist this week to touch base on possible radiation after chemo. In addition, I opted for a stronger chemo regimen because I felt that right now I'm in better health to handle it than I might be another 10 years down the road. My choice about additional radiation will be based on the same premise : what can I do now to make the best choices of avoiding cancer a third time. No guarantees, but no regrets.

    Edited to add: Quality of life is a huge concern for me and lymphedema would potentially reduce that quality exponentially for me. A third bc dx would as well. I’m just doing the dance, balancing the scales, weighing my odds based on the best information I can get. Studies and anecdotal results from doctors treating cancer patients day in and day out; what I think I am capable of handling. How much of a crap shoot it all might be. Yes difficult questions we all must decide, but then just making a decision, embracing it and getting on with it

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  • gb2115
    gb2115 Member Posts: 1,894
    edited November 2021

    Elle2, these are tough decisions for sure. I have to get ALND once my chemo is done. I had a locoregional recurrence this summer despite tamoxifen use. I ended up with 2 positive nodes, both macromets, one with extranodal extension. Like you, it wasn't seen during the quick path look during surgery, but in the closer look after. Otherwise I would have had the ALND done during the mastectomy.

    They sent me to radiation but she refused to give me more radiation, saying I have already had my limit to the area back in 2016 with that positive node. Radiation says don't get the ALND because you'll get lymphedema. MO and BS are like, uh yeah that all has to come out. Lymphedema specialist says if it were me, I'd get the nodes out. That was interesting to hear. She says if it happens we'll treat it.

    I'm afraid of lymphedema, but my body is clearly trying to kill me, so that's that. Plus I just watched my mom die from metastasis this summer. I'd hate to have that happen to me and feel like I didn't do everything I could. :-(

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  • Elle2
    Elle2 Member Posts: 71
    edited November 2021

    gb2115 - I am sorry to hear about your mother's passing. My condolences to you and your family, and I'm terribly sorry you have to deal with all of this at a young age. I thank you deeply for responding with your story that is so similar to mine. Yes, it is a grey area and ends up being determined on a case by case basis, but I think decided more by the patient than the doctor. We both have to determine our risks, take our chances and hope for the best possible outcome. I'm leaning towards more aggressive options now. After chemo, I will decide, based on the radiologist, whether I could do more radiation. Mine was 13 years ago and maybe that greater time frame will allow better odds. I would love to keep up with you as you go along and see the result of our choices, which I hope will be successful. I have 3 more rounds of AC, followed by 12 weeks of Taxotere. What is your plan for chemo?

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  • gb2115
    gb2115 Member Posts: 1,894
    edited November 2021

    Elle2--I did the 4 rounds of AC and have 5 Taxol treatments left. I start ovarian suppression after that, and then ALND roughly 6 weeks after chemo is done. After that I start Aromasin.

    Sure is a long road!

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  • Elle2
    Elle2 Member Posts: 71
    edited November 2021

    Gb - yes, it sure is. I’m curious as to the need for ALND after chemo? I’m assuming your docs will check for any residual involvement in the lymph nodes before that surgery? Isn’t the point of chemo to mop up what’s left (so to speak) so that you may not need the ALND by then?

    How did you do with the AC? After my first, I’ve had extreme fatigue, almost debilitating for 5 days. Does it get worse? Does Taxol add to it, or did you have different side effects?

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  • gb2115
    gb2115 Member Posts: 1,894
    edited November 2021

    Despite macromets, my positive nodes weren't visible on imaging at all (with either tumor)--- they were found at sentinel node biopsy, so I guess it would be impossible for them to check for residual disease other than via surgery. I will be sure to ask them about that, though, to see if that's the reason. The surgeon is going to do reverse lymph node mapping to try to preserve nodes. I appreciate that she's going to try that.

    AC was rough. I did have fatigue but my biggest issues were debilitating nausea and thrush. I had to take olanzapine to keep from throwing up and that made me a zombie for about 4 days. Had skin problems too. With Taxol it's bone pain, nosebleeds and the neuropathy that just started a couple of days ago.

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  • Elle2
    Elle2 Member Posts: 71
    edited November 2021

    gb2115 - I did talk to my surgeon about reverse lymph node mapping. I understood that since the lymph node dissection involved following the lymph pathways from the nipple to the nodes, that path was no longer available after a mastectomy. So the reverse lymph node mapping would instead start in the arm and follow the pathways back toward the breast. But for me, again, adding that mapping surgery would increase the odds of lymphedema back up to 30-40%, right where I would be for the ALND. I decided against that route.

    I have decided to go with the stronger chemo regimen of AC + T to deal with the micromets. I was also offered without A. I decided first that since I was in good health otherwise, that I'd rather hit it hard now as opposed to 10 years from now when I was less strong; second, that a more potent regime would mop up the micromets; third, that quality of life was a stronger consideration at this age (avoiding lymphadema) and finally, that I needed to have peace of mind knowing I was throwing everything at this second dx. I have no regrets about my decision, at this point, just trying to follow it through.

    Thank you for sharing your response to Chemo. We all do have varying side effects and varying severity, but I'm glad you are getting through it.


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  • Mariadelpilar
    Mariadelpilar Member Posts: 65
    edited November 2021

    Lilly , I also had 2 out of 5 nodes test positive for cancer eith 3 and 4mm. How big were your Mets in your lymph nodes? I had chemo and radiation.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited November 2021

    Elle2, it does increase the odds of lymphedema. She did say that the reverse mapping is less destructive to the area than just removing all the nodes. In any event, I think if my nodes had micromets I would be thinking similarly to you! I've kind of resolved myself to expecting lymphedema, honestly. That 5mm positive node with extension really has me spooked. Especially because she only took 2 nodes and both were grossly positive. If it had been 2 out of 5, I might be able to convince myself that the rest are ok. As it stands, my understanding is that locoregional recurrence increases the risk of further recurrence by a lot. I feel doing all I can is wise, but it's definitely not something I actually want to do. But I would rather be here to see my 9 year old daughter grow up, even if it's with disability and lymphedema. I already have a lymphedema specialist and an ongoing order for eval, so if I run into trouble I have someone I can call to be seen quickly. I got measured after the mastectomy so we have a baseline. The mastectomy and node biopsy didn't change the arm measurements from 5 years ago so that's good.

    It's terrible that we even have to make these decisions. :-(


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  • new_direction
    new_direction Member Posts: 449
    edited November 2021

    There have been studies showing no difference in survival and recurrence when having micromets in sentinel node and either getting axillary lymph node dissection or no treatment.


    1. Galimbert et al. Axillary dissection versus no axillary dissection in patients with sentinel-node micrometastases: a phase 3 randomised controlled trial. Lancet Oncol. 2013;14(4):297-305.
    2. Sola M et al. Complete axillary lymph node dissection versus clinical follow-up in breast cancer patients with sentinel node micrometastasis: final results from the multicenter clinical trial AATRM 048/13/2000. AnnSurgOncol. 2013;20(1):120-7.

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  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited November 2021

    Mariadelpilar, I am sorry for the late message. I had micrometers on my nodes, however, once cancer cells are out of the breast makes me nervous. I can't believe I didn't push to have other nodes removed.

    Guidelines keep changing every 3-4 years and I believe we as patients have to push for more aggressive treatments if we believe so. I agree to have aggressive treatments at a younger age than older. We can't be one size fits all having the same recommendation for women on the 40 same as women on their 70.

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