Fill Out Your Profile to share more about you. Learn more...

Masectomy with positive lymph nodes

Options

I am 42 years old and diagnosed with stage III breast cancer to right breast ER/PR + HER2- November 2022. I completed chemotherapy on May 2023. I had right breast mastectomy on July 18. Three out of four of sentinel lymph nodes were positve for cancer cells. I am left with decision of another surgery to remove all lymphedema nodes or radiation. I am seeking guidance and to hear others stories. Struggling with what to do?

Comments

  • elainetherese
    elainetherese Member Posts: 1,625
    Options

    Hmm, usually the surgeon just removes the Levels 1 and 2 nodes, leaving the Level 3 nodes intact. I had my axillary lymph nodes (20 in total) removed back in 2015 and never developed lymphedema. In general, however, the more nodes you remove, the greater the chance of lymphedema.

    What was your oncotype? If it was super-high, I might consider the surgery. Also, was there residual cancer after chemo in your breast? That might suggest that chemo wasn't as effective as hoped. Those are two factors that would play into my decision making, were I you.

  • moderators
    moderators Posts: 7,901
    Options

    Hi @chunkybooboo,

    Hopefully others will chime in to be able to provide you some thoughts to help you in your decision-making process. In the meantime, we have an article that goes over the benefits and drawbacks of sentinel lymph node dissection, which could be helpful for you as well:

    For reference re: @elainetherese's question about your OncoType, you can see this article on OncoType scores here:

    We also have weekly free virtual meet-ups with other early stage breast cancer patients that you could join and hear stories in real time. It can be a nice way to get support and information in a personal way. You can take a look at the schedule and register here:

  • starbridge
    starbridge Member Posts: 5
    Options

    I had an axillary lymph node dissection after having 2 positive sentinel nodes. I wasn't really given a choice. In total 25 were removed and no more positive nodes were found. My relief at this news outweighed the realisation that I had undergone unnecessary surgery. I have a wee bit of oedema on my chest wall but my arm is okay so far. The friend I met on the ward chose radiation for a similar scenario - her tumour was a bit smaller than mine so she was offered a trial looking at this very issue.

    There is a poster here (think she is called LeesaD) who had positive nodes further down the chain after it has skipped a few. I guess the evidence suggests this scenario is unusual or that it gets taken care of by radiation but I think we all feel some security in the idea of surgical removal of the cancer from our bodies.

    All the best with whatever you decide.

  • kotchaj
    kotchaj Member Posts: 209
    Options

    I had 21 lymph nodes removed, 20 were cancerous so I'm glad I did get them out. I also had chemo, mastectomy AND radiation. I did not have a complete response to chemo, so I wanted as much as could be thrown at mine. I did have clear margins, thank goodness.

  • lw422
    lw422 Member Posts: 1,399
    Options

    Tough decision; I'd probably go with my doctor's recommendation. I'd also like to add that radiation can also cause lymphedema… so if you are leaning toward rads instead of the lymph node dissection for that reason there are no guarantees with either choice. Good luck to you.

  • iamnobird
    iamnobird Member Posts: 229
    Options

    My oncology practice told me that they believe that radiation instead of removal will become the new standard of care for most people as survival and outcomes are about the same, but that your risk of lymphedema is significantly lower with radiation. I had 1 positive sentinel node so the plan is for me to have radiation after chemo.

    Of course there are no guarantees, there is absolutely a chance of lymphedema with sentinel node removal and radiation, but that chance is quite a bit lower and if outcomes are the same, I prefer that option.

    Anyways, good luck making this decision. My medical team feels strongly that radiation is the best path for me. Maybe you can get them to let you know which they feel is most appropriate for your situation and why.

  • maggie15
    maggie15 Member Posts: 852
    Options

    While the statistical outcomes are the same my oncology team recommended radiation rather than axillary dissection in my case to lower the risk of lymphedema and because they felt the radiation might be more effective. I had LVI and while removing the nodes removes the cancerous cells in them it doesn't kill any that may have escaped into nearby tissue.

    Iamnobird's suggestion of asking your medical team for their reasoning (pros and cons) is a good one. I did end up with breast lymphedema but so far my arm has been fine. Good luck with your decision.

  • laughinggull
    laughinggull Member Posts: 511
    edited August 2023
    Options

    This is a tough decision to make and one that requires careful analysis of pros and cons, considering your specific circumstances, like your age and risk of lymphedema (to the extent that it can be measured); I had node involvement, with two palpable nodes confirmed positive for cancer at diagnosis (I was 47) that still had lots of cancer in them after chemo and targeted therapy; I ended up having the full axillary lymph node dissection (ALND), and also radiation. I haven't developed lymphedema so far, but I am also very active (swimmer, runner, weights) and on the thin side, so it looked like my risk of lymphedema was low (although there are no guarantees with lymphedema) and I was willing to take that risk, rather than more recurrence risk.

    Can you ask your MO and surgeon to share with you the data/evidence you need to consider to make your decision? The papers and/or guidance they think apply to your case. You can also see a lymphedema specialist for an assessment. Or get a second opinion somewhere else. When they leave the decision to you, they should help you understand the evidence, pros and cons, risks.

    Best of luck with this difficult decision, let us know how it all goes.