Lymph node removal Concerns!

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ellied41
ellied41 Member Posts: 6

Hi everyone. My mom was just diagnosed with stage 2 breast cancer, ER+ , HER2-. We have met with three different surgeons and the one at UTSW that we liked mentioned that if just one of her lymph nodes had cancer in them in the sentinel node biopsy after chemo she will take all of them out. I am very concerned about lymphedema and the problems that would likely come by doing that. My mom is only 52. The other surgeons we met with recommended only taking out those lymph nodes with cancer. I am trying to help her make the best informed decision and made an account on here to see if anyone had any experiences with this. What did all's surgeon do? Thank yall so much!

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  • kathabus
    kathabus Member Posts: 205
    edited December 2020

    Hi--You really don't know if a lymph node is metastatic unless they take it out and look at it under a microscope. You can suspect sometimes due to the size shown on the imaging. So there is no way to point out which ones to take and leave. That's the issue with "only taking out those with cancer."

    They do sentinel node biopsies now because they know that those 1-3 nodes are the first ones they typically go to. Some surgeons will still go in and take out more if the sentinel lymph node(s) has cancer. Some do not. Some rely on radiation to kill the cancer cells that may still exist in the following nodes. And this is, in fact, to minimize problems with lymphedema.

    The problem I see in certain situations with leaving the rest of the nodes if one has cancer....you don't know what you're dealing with. I think that's the struggle for some.

    In my case, they did a lumpectomy and a sentinel node biopsy. To our surprise, that 1 node had 8mm of cancer in it. We did NOT go in and take more. There was part of me that wanted to, quite honestly, but I followed the guidelines in my situation and just adjusted the radiation to deal with anything that might still be there.

    Since your mom is Stage 2, I'm not sure if her guidelines would be different or not. I was Stage I with mass of 2.5cm. More folks will come along with their experiences and advice!

    I will tell you that even though I had only a sentinel node biopsy, I have a little lymphedema in my breast and arm. The radiation and surgery can also cause lymphedema, unfortunately. But mine is such that I do exercises, wear a compression bra and sleeve. It's nothing too drastic and we're on top of it. But that's something I didn't understand until it happened to me.

    Edited to add--I did not have extra capsular extension on that node. If I did, that may have changed our minds to go in and take more, too....

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited December 2020

    There has been a lot of evidence lately that axillary lymph node dissection (removing many nodes) isn't any better than sentinel lymph node dissection, so many doctors are moving away from it (as they should, in my opinion). I didn't have any positive nodes, but if I had I would not want axillary dissection, it's associated with too many side effects. Here are just a few of the many studies about this subject:

    https://pubmed.ncbi.nlm.nih.gov/26054706/

    https://pubmed.ncbi.nlm.nih.gov/29589679/

    https://pubmed.ncbi.nlm.nih.gov/25439688/


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2020

    Lymphadema is a crap shoot. Some breast cancer patients get it after one node has been removed; some (like me) don't get it, even after having 20 nodes removed. I was annoyed when my surgeon took out 20; in retrospect, it was overkill. None of the nodes showed active cancer after chemo according to scans (MRI and PET scan), and I was slated to do radiation anyways. However, when one node tested positive for cancer (before chemo), my surgeon neglected to insert a surgical marker in that node so he could identify it later. So, when my scans were clear, he couldn't just take out that one node, and he ended up taking out all my Levels 1 and 2 nodes.

    Less is more. Since you've talked to three surgeons, I would suggest you go with a surgeon who will just focus on the sentinel node(s).


  • LaughingGull
    LaughingGull Member Posts: 560
    edited December 2020

    Couple things to consider:

    • If she goes with SLND, will the surgeon be willing to go back and remove more nodes if, after pathology, they see that there is more cancer, and more aggressive than expected?
    • The ways of lymphedema are mysterious, but there are some known risk factors, e.g. being overweight. Does your mom have any of them? If yes that would be yet another reason to lean towards SLND only.

    Best of luck with your decision!

  • brittonkb
    brittonkb Member Posts: 102
    edited December 2020

    I didn't have any known positive nodes under after my lumpectomy. My surgeon identified that the first node was positive and then took a few more. I ended up with 3 of 4 positive nodes. At that point, I switched my care to the Stefanie Spielman Breast Center at Ohio State Univ. (part of the James Cancer Center). They recommended ALND - based on 3 positive nodes they estimated > 80% likelihood of additional positive nodes. My local surgeon didn't think I should get the ALND. For me, I needed to know whether there were more or I would never rest easy that I did all I could do. Luckily there were no further positive nodes but I don't regret the ALND. At the same time as the ALND I had a Lymphovenous Bypass performed by a plastic surgeon. This is typically done after someone develops Lymphedema, but my center has begun performing it prophylactically and has shown to significantly reduce the risk of developing lymphedema. I just had my surgery 5 months ago so still early, but may be worth looking into for your mother if she moves forward with the ALND. Good luck. I know these decisions are never easy.

  • Jaybird627
    Jaybird627 Member Posts: 2,144
    edited December 2020

    I've had BC 2 times. Both times SN and other nodes were positive. Both times all nodes were removed. Age 44 and 57. No lymphedema either time. Had some cording 2nd time. It seems under control now. And 1st time R side, 2nd time L side. As stated previously, lymphedema is a crap shoot as can be any side effect from BC TX. Choose the team you feel most comfortable with. Good luck!


    J ~

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited December 2020

    Statistically lymphedema becomes more likely with the number of nodes removed. Everyone should make an educated choice for this surgery.

  • morningstardust
    morningstardust Member Posts: 22
    edited December 2020

    I have the same diagnosis as your mom, though I'm only 35 (2020 wooo). I had an excellent clinical response to chemo and it still didn't kill all the cancer at the time of my surgery earlier this month because mine is a whopping 95% estrogen positive. When they went in, the intention was sentinel node but when they saw it was still present they did axillary dissection and took 13 nodes. I was very upset when I woke up because I assumed that meant it spread. Of the 13, the original one they knew about had cancer and there was a micro amount in a second node next to it. I haven't gotten lymphedema so far, still time I'm sure especially since I'm doing radiation too. But my doctor said she was going to do what it took to keep me alive and safe so I was very happy with the decision...in fact I told them when they woke me up that had I been lucid I would have made the same decision. I think it's all about trusting your doctor's, going with the flow, and just remembering the goal is to get rid of it.

  • Flowerkid
    Flowerkid Member Posts: 89
    edited April 2021

    Brittonkb

    Can I ask for the name of your surgeon if you were satisfied with the surgery. You can certainly pm me if better.

    I get all my treatment at Spielman (super happy with the place). I am a year out of surgery and have mild lymphedema and am considering lvb and reconstruction. So looking to see who liked their surgeon.

    Thanks so much!

  • brittonkb
    brittonkb Member Posts: 102
    edited May 2021

    Sorry I didn’t see this sooner! I used Chetta. He pretty much piggy-backed on my ALND surgery (surgeon was Oppong). Had a really good experience with it and (knock on wood) no lymphedema at this point. Might be too early to tell if it worked long term. Good luck

  • Flowerkid
    Flowerkid Member Posts: 89
    edited May 2021

    Just saw your response now. Thank you! I am certainly glad you had a good experience with the surgery so far.

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