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Additional lymph node dissection after finding micromets?

elle2
elle2 Member Posts: 57
edited January 2022 in Lymphedema

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.

Comments

  • NOLAstrong
    NOLAstrong Member Posts: 2

    I have actually never posted before (I'm more of a lurker), but when I saw your situation, I felt it was important to share. I was in a similar situation where they found the micro met after the initial surgery. The tumor board was split about what to do. 1/3 said do nothing, 1/3 said axillary node dissection, 1/3 said radiation, which was not helpful in making my decision. Shortly after this, my mammaprint came back saying I was high risk for distant recurrence, so then chemo was warranted. Upon meeting with my oncologist, she told me that knowing what was going on with my remaining lymph nodes would be helpful for her to determine the best course of treatment and in how aggressive to be with the chemo. I personally had concerns about AC-T due to the risk of heart problems. I was 44 at the time and very active and was looking long term. She also told me I was in the lower risk category for lymphedema. So I chose to do a node dissection.

    The remaining 7 nodes were negative, so I ended up doing 4 cycles of TC (instead of 6 cycles or AC-T). One thing that I wasn't prepared for was the numb feeling on the back of my arm. Apparently when the doctor goes in for the second surgery, they evaluate the nerve and mine was looking 'chewed up' from the first surgery. My surgeon severed it because of this. She said she did this because with that level of damage and the additional damage that would occur in the surgery, it would lead to a burning sensation. I'm used to it now, but wasn't informed that was a risk ahead of time, so wanted you to know about this.

    About halfway through my chemo I started experiencing swelling throughout my body (face looked puffy, my ankles feet reminded me of being about 5 months pregnant). Fast forward to the weeks following my final chemo treatment, I was still experiencing fluid retention in my legs/feet. My wrist in my node dissection arm started to hurt. I figured I had just twisted it funny lifting something. I now know that was my first sign that lymphedema was starting. Then one afternoon, after my wrist hurting for a few weeks, I was bundled up and fishing on the boat and when we came back my entire arm was visibly swollen and that is when I knew and a few weeks after that I was able to connect the dots on the wrist pain.

    So far, I am able to manage it with compression, almost daily use of a flex-touch machine or self massage if I am away from the machine, exercise, and maintaining a healthy weight. I try not to second guess my decisions, because who knows, if I had done the AC-T maybe I would have been one of the folks to develop heart issues or if I had done that longer chemo cycle, I would have been immunocompromised longer and ended up with a bad infection. I also wonder if I would have ended up with lymphedema with just the sentinel node removed. With the amount of fluid retention I experienced from chemo, I think that is very possible it would have triggered in that situation too. And I try to focus on the positive, which is that I am still here and so far able to manage it.

    I know that is probably not very helpful. I know the most frustrating thing for me, was trying to make the decision. I was very surprised that the doctors didn't have a strong recommendation and weren't in agreement about what to do with the micromet.


  • elle2
    elle2 Member Posts: 57

    NOLAstrong - thank you very much for responding to my post! Our situations are very similar with difficult decisions based on the lack of a concrete medical process. There are so many factors involved that it feels like I have to rol the dice and hope for the best. I wanted the science to be accurate and the medical community to be unanimous in its decision, but that's just not always how it works. Another BC lesson I'm learning to accept.

    The notable difference between our situations is the risk of developing lymphadema. My BS said my risk is 30-40% if I went forward with the axillary lymph node dissection. In asking for clarification, she explained the factors that made my risk so high:

    #1. I had WBI (whole breast) radiation in 2008 which involves some lymph area.

    #2. I had a lumpectomy in 2008 which was directly adjacent to the lymph area.

    #3. I've recently had the SLND (Sentinel Lymph Node Dissection)

    #4. I recently had an MX.

    #5. I will be having chemotherapy.

    She said it is the combination of procedures affecting the left arm/lymph area that continues to increase the risk for me. She knows I ride horses, it is something I have always loved to do and have done since I was 5 years old. Lymphedema will end that for me and it is a quality of life decision I don't want to make. So, I am choosing to forego the ALND and instead go for a more aggressive, stronger chemo regimen. I will be doing AC + T ( total 6 months) and hope that wipes out anything left in the lymph nodes. I'm sorry you developed lymphedema and had to make those tough decisions. I hope I am making the right decisions too.


  • kira
    kira Member Posts: 659

    Elle, the scientific literature has shown very clearly that there is no medical benefit from removing more lymph nodes in your situation.

    https://jamanetwork.com/journals/jama/fullarticle/2653737


    And the tumor board agreed.

    There are women with Lymphedema who still ride and care for their horses.

    We all make such complicated decisions with the best information we have at the time.



  • NOLAstrong
    NOLAstrong Member Posts: 2

    Elle2, It looks like you are collecting all the information to make an informed decision, which I think is the best we can do. Best of luck to you with your chemotherapy and recovery, and I hope you never develop lymphedema!

  • parakeetsrule
    parakeetsrule Member Posts: 605

    I know this thread is a little old but there's no reason you can't ride horses with lymphedema! I have it in my left arm and sometimes hand, and there's nothing I don't do. I don't avoid anything. I even started weight lifting which I didn't do at all before I developed lymphedema!

    And as a person with both lymphedema and Stage IV cancer, I can assure you that lymphedema is WAY better.

  • elle2
    elle2 Member Posts: 57

    Hi ParakeetsRule - Thank you for the positive post! While you’re a decade, or so, 😉 younger than I am, it was inspiring to hear that you’ve taken up weightlifting with lymphedema. It makes sense that the stronger your muscles become, the less the lymphedema would be an issue. Just a thought, are you at all concerned that the lactic acid buildup from weightlifting would create more swelling if the lymph nodes can’t drain properly? I’m not sure how all that works.

    I realize that lymphedema doesn’t mean the end to riding. It’s just that putting everything in my life together that I enjoy or require: riding, some heavy lifting, frequent international air travel, hot tubs - all seem to be bad for developing lymphedema in the future, even without the additional LND. I’m also trying my best to avoid quality of life issues after cancer which can be so difficult for us to deal with.

    Based on the information from my MDA doctors, the response from the board and the pathology that says I’m considered “node negative” because the result is >200 micro metastasis, I am now comfortable with the decisions that I made which is choosing to forego the ALND, and choosing the stronger chemo regimen. I also had further discussions with the medical radiologist and additional radiation is also off the table Being a two-timer doesn’t make this easier, but it does help me realize that the end result is not something I can control. If that was the case, I wouldn’t be having this discussion right now. So I’m not going to stress over it, but instead choose my decisions with as much information as I can, move forward and hope for the best!



  • parakeetsrule
    parakeetsrule Member Posts: 605

    I don't really know anything about lactic acid either! My physical therapist just said to start slow and increase slowly, and pause or decrease if anything fishy happened. But it's been fine. I still fly with no problem and occasionally use hot tubs if I encounter one. The main risk is injury or infection.