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SLNB positive, Axillary Dissection or Radiation?

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Nikkyb09
Nikkyb09 Member Posts: 7

Just got results back from my bilateral mastectomy and SLN biopsy, they originally told me that my lymph nodes were clear after getting back the results of the frozen section... but just found out with further testing that they weren't. 😔 Out of the 3 tested, all 3 showed something. I now have to make the decision to either go back and have more taken, which of course raises my risk of lymphedema. Or stick with just radiation and hope that that is enough to take care of it. Anyone go through something similar ? Any advice ?

I've read studies such as the AMAROS 10 year study which compares the two treatment options and states: "Our new 10-year data show that axillary radiotherapy and axillary lymph node dissection provide excellent and comparable overall survival, distant metastasis–free survival, and locoregional control." The study also showed that the risk of lymphedema was a lot higher in the group that had the dissections vs. just rads, I believe it was 15% vs 30 %.

My surgeon says that their standard is to go back and take more, but she also referenced new studies saying that they may be doing "too much". I'll be meeting with my medical oncologist tomorrow to discuss further and get her opinion, as well as meeting with my radiologist on tuesday for the same reason. But I'm kinda stuck.

For extra info, see below for my pathology results. I've also already had AC-T chemo which originally showed full resolution of my cancer on the MRI. But I wonder if the cancer in the lymph nodes was just too small to show? since the results of the SLNB didn't show any fibrous material/dead cancer showing that chemo took care of it.

Lymph Nodes
Regional Lymph Nodes: Involved by tumor cells
Number of Lymph Nodes with Macrometastases (> 2 mm): 1
Number of Lymph Nodes with Micrometastases (> 0.2 mm to 2 mm and / or >200 cells): 1
Number of Lymph Nodes with Isolated Tumor Cells (<= 0.2 mm or <= 200cells): 1
Size of Largest Metastatic Deposit (Millimeters): 4 mm
Extranodal Extension: Not identified
Total Number of Lymph Nodes Examined: 3
Number of Sentinel Nodes Examined: 3

Comments

  • threetree
    threetree Member Posts: 1,465
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    Hi Nikky - First, I'm sorry to see that you are only 29 and in this situation. My situation isn't exactly the same, and I am about 40 years older than you, but I think that some of what happened in my situation might be of help to you. I'll try to explain without writing a full length novel. I also had a tumor that was about 5 cm. It was causing pressure and swelling in my arm even prior to diagnosis - it's one of the reasons I went to get checked. After all the scans, etc., the "traditional" radiologist told me the feeling, after a tumor board meeting, was that my nodes were clear; the surgeon however, told me that one node had shown up as "swollen" on the MRI, and it wasn't known at that time if it was just swollen or if it had cancer. I never got a definitive take. No ALND was done, and I had neo-adjuvant AC-T. Following the chemo, I had surgery in which 2 sentinel nodes were taken, and both were clear. At the time of surgery follow-up, the surgeon noted that my arm was somewhat swollen, became very concerned, and sent me to a lymphedema specialist. In the meantime, I went to look into Proton radiation and decided to go with that over the "traditional" radiation.

    The place I go to for treatment is a consortium of organizations in my city. Some of the doctors work specifically for a cancer business, and some work for a university/medical school. My oncologist and radiologist are from the cancer organization and my surgeon (who has since retired) was from the university. Before my proton radiation started, the providers from the cancer organization all had a meeting without the surgeon present (he was apparently out of town) and they decided that what he had done was wrong and that I should have had an ALND, and they were upset that he hadn't done it, and they were frustrated that they then didn't have all the data they would have liked to have had. The proton radiologist seemed to be upset that she would have no choice but to radiate my axillary area, because the surgeon had only done the sentinel node biopsy.

    I talked to the surgeon about this and he said that he was very concerned about aggravating the lymphedema and had not felt that overall there would be any difference in the outcome. He said that radiation should take care of any problem that might have remained with my nodes. Interestingly, the oncologist had also told me that radiation should take care of any residual problems in that area. The surgeon did tell me that there were some "meet them halfway" measures he could take, such as something called a "reverse sentinel node biopsy" where they start in your lower arm and work their way up into the axillary area (I think that was the deal), or to do something like an axillary ultra sound and biopsy anything that might look suspicious there. He said those options could provide more info, but not aggravate any lymphedema as much. I opted to leave things as they were, so never had any further node analysis/treatment. I had read a study (that I cannot remember and cannot offer a cite to) that had said in the final analysis, in cases similar to mine, there was no real overall difference in outcome, i.e. overall survival. I mentioned this to the surgeon and he just nodded his head.

    There was a distinct difference in approach and philosophy/policy between those who worked for the cancer organization and those who worked for the university. Also, the providers who worked at the cancer organization were collectively younger and seemed to be more data driven. My surgeon who worked for the university was older (early to mid 60's) and seemed more "old school" if you will, and seemed to combine art and science in his approach, rather than just the "pure science" way of the younger doctors. I think he based his decisions on a lot of experience over the years, and not just data, as the younger doctors seem to do. Also, I had mentioned this disagreement between the providers in casual conversation with some of the university staff while making appointments, etc. and they all said in very strong language that there was no question whose opinion they would go with, and it was the surgeon's of course. Most had known of his work for years, and many at the university there go to him themselves and they told me that if there was any issue, they would go with his opinion over anyone else's. Well, to this day (about 2 years later) the cancer organization doctors remain frustrated that there was never a full ALND, that the surgeon did not go back in and take more nodes, and that they do not have total and complete data/numbers to work with. I now see the prior surgeon's partner, who also is affiliated with the university and not the cancer organization, and she looked at my history and immediately saw and affirmed that the original surgeon had not "gone big" on the node dissection to spare me the lymphedema getting worse. She didn't seem to have a problem with it.

    In your situation, though, they did find cancer in the sentinel nodes and that is a notably different situation. Are you able to get some second and/or third opinions? Lymphedema is a very real concern and the proton radiation that I had did make my lymphedema worse, in addition to what I had originally. It was originally described as "mild", but since the radiation, they call it "moderate". I wear a compression sleeve that seems to put it back to "mild". Overall it is under control, but I remain convinced that further node removal and dissection would have only made my situation worse. Not only did my tumor aggravate my nodes in the first place, but so did all the further treatment. Be very careful and try to get as many opinions as you can, or maybe see if there is some kind of "in-between" as my surgeon had suggested.

    I'm going to stop because this is a ridiculously long post, but I honestly did not know how to respond without so much explanation and detail. I really do sympathize with your situation and think that some of what I went through might be helpful, so I put it all out there. I to was ER/PR positive, HER negative, Grade 2. It has been about 2 1/2 years since my diagnosis and treatment and so far, so good. I don't regret the treatment decisions I made.

    I wish you the absolute best here and hope all goes very well for you! (Also, want to thank you for the reference to the AMOROS study, as I had never come across it before and will check it out.)

  • berries
    berries Member Posts: 80
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    This was my exact situation, but I had surgery first after scans showed no lymph node involvement. After surgery 4/4 were impacted. I had many conversations with my surgeon and my radiation oncologist at an NC-designated hospital system and both said no to an ALND. Here is the exact response from my surgeon. I hope this helps you! Please feel free to reach out if there is anything I can do to help you during this time. I know how scary and difficult these decisions can be!

    Much love!

    I'm usually the one arguing for less surgery rather than more (and I'm a surgeon).
    -When we perform a sentinel node dissection we remove the nodes identified by the dye AND any node that look or feels abnormal, thus no remaining abn nodes

    -An axillary dissection will not improve survival
    -An axillary dissection will not determine chemotherapy
    -An axillary dissection may decrease the risk of a node reappearing in the axilla but only buy a few percentage points


    An axillary dissection WILL increase risk of lymphedema to15-20%
    I am comfortable using radiation to manage the axilla (less risk of lymphedema) rather than an axillary dissection
  • laughinggull
    laughinggull Member Posts: 517
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    Hi dear,

    Sorry you find yourself with cancer at such a young age, and now this surprise from surgery. I also had residual cancer in my nodes, including macromets, as is your case. I had a full axillary lymph node dissection AND radiation. My cancer was very aggressive and sneaky, and didn't show in imaging.

    My surgeon and onc were both old school and they didn't give me the chance of being less aggressive with the nodes removal. That being said, I wouldn't have taken that chance. I asked them about the risk of lymphedema, and they both told me my risk was low (thin and a swimmer) but there was a risk. I also consulted with a certified lymphedema specialist who said the same. They offered me radiation as optional, on top of the nodes removal (it increases your lymphedema risk); I opted for the most aggressive treatment, and I made peace with the fact that I could develop lymphedema. My kids were 10 years old when I went through treatment, and I decided it was important to me to throw everything at this cancer, and deal with whatever side effects would happen.

    So I suggest that you try to assess your lymphedema risk, and add that to the equation. And that you ask for a second opinion if you can, that helps provide perspective and peace of mind.

    Also, that AMAROS study considers a big population, are the results broken down by number of nodes, and macro mets vs scattered cells? I doubt that, as an individual, your risk is the same as that of someone that had clear nodes after the sentinel node biopsy.

    I am three years out from surgery and no lymphedema (or cancer recurrence), fingers crossed. I am fully ready to deal with whatever comes my way, and did not regret my decision for a minute.

    Best of luck,

    LaughingGull Heart

  • Nikkyb09
    Nikkyb09 Member Posts: 7
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    @ ThreeTree - Thank you for telling your story, I will definitely ask about the "inbetween" options. Surprisingly enough, my medical oncologist did say that they met with the tumor board and the consensus was that I should just get the radiation. I meet with the radiation oncologist on tues to discuss more in depth. I think I will also look into a second opinion.

    I think in your case you do have some peace of mind, that your 2 nodes ended up being negative. I think even if I had 1/3 positive I would feel a little better, knowing the cancer would most likely pass through the SLNs first, and probably only got to the first one. But with having 3/3 I'm concerned if I don't do the axillary dissection that we will miss something. I also know that having both the dissection AND radiation leads to a 40-50% chance of getting lymphedema, and I can't pass on radiation. I don't know how mild or extreme the lymphedema would be if I did get it, from what my surgeon tells me one thing I do have on my side is my lower BMI. But I'm still pretty stuck on what to do.

  • Nikkyb09
    Nikkyb09 Member Posts: 7
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    @ berries - Thank you for sending what your Dr. had told you. It was very helpful. How do you feel about your decision? Have you noticed any sign of lymphedema? I was told yesterday that the consensus among the tumor board was to proceed with just radiation. I think with my previous MRI showing no side of abnormal nodes after chemo, they suspect there is not much cancer there besides the ones they found (at least that was my impression of what my oncologist was telling me). I plan to talk more indepth with my radiation oncologist and get some more stats if I can.

    I think a big piece of my concern is my age. In your dr. saying "An axillary dissection will not improve survival" I wonder if this is for the typical BC population, or also for someone who is young like me (29). I would think that if they were able to get all cancerous nodes out, so it wouldn't be able to spread to other parts of my body, that would improve my survival (long term, not just 5-10 year survival). I think what I don't know is the certainty that the radiation can 100% kill the cancer in my nodes, I just don't know enough about radiation. If it only subdues it or kills SOME of it, I would think 5 yr survival rates, or even 10 year survival rates could be similar. But what about 40-60 years? I'm hoping I have a lot more life to live... so this is what concerns me. I hope the radiation oncologist can offer some stats to support the decision for someone my age.

  • Nikkyb09
    Nikkyb09 Member Posts: 7
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    @ LaughingGull - Thank you for your reply, I hear you and this far I have also been pushing through and going for the most aggressive treatment I can to combat against my diagnosis. I respect that you chose to go through the most aggressive approach to be around for your kids. I have had similar thoughts being young and wanting to be around long enough to have the option of having kids, and to of course see them grow up. I'm glad that you were lucky to not end up with any signs of lymphedema. I have read up a little on my risk factors for getting lymphedema, it seems like the main thing helping me out is my lower BMI. How many of your SLNs came back positive? How many had macromets?

    My oncologist did say that they met with the tumor board and the consensus was to go with just radiation. I was kinda surprised by this, but I'm hoping to hear more from my radiation oncologist. I've only met with him once and it was at the very start of my treatment, so I'm hoping to learn more that will make me feel better about whichever choice I make.

  • threetree
    threetree Member Posts: 1,465
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    Nikky - Thanks for the update on your situation. Yes, it does give me more peace of mind than you might have, knowing that my sentinel nodes were clear, however, they couldn't get a clean margin and there were a couple of millimeters of cancer left (he said he'd have to remove ribs to get it). Even with that, this particular surgeon, and the oncologist, seemed to think that radiation would be enough. Again, I think opinions vary.

    One thing too, to remember about lymphedema is that it apparently doesn't always show up right away - some have mentioned how it appeared years later, and they had been real surprised after having thought they'd "escaped" the problem. Like you mentioned, weight too is a very important factor from all I've heard and read, but then there's the "can you stay slim for decades into the future" issue. Some have no problem, as they are naturally thin, but others have natural tendencies towards overweight; especially as they have children, get older, etc. You might want to look around your family and see how that might play out for you.

    Just wishing you so, so much luck - it's good that you are doing so much research and thinking about this, you won't regret it!

  • laughinggull
    laughinggull Member Posts: 517
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    Hi Nikkyb09,

    Two of my nodes came positive with macromets, the rest were clear. Extra capsular extension present, also lymphovascular invasion in the breast tumor, grade 3, very aggressive cancer.

    LaughingGull

  • buttonsmachine
    buttonsmachine Member Posts: 339
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    Nikky, ((hugs))

    I'm sorry you're facing this. My advice, in short, would be to go with what your doctors recommend. I think this is one of those tricky situations where as younger ladies (I was diagnosed at 32) we don't neatly fit into the statistical data, and that is why the clinical judgement of our doctors is so important. Most studies are done on older women with more typical breast cancers, and as you know, young women's breast cancers can behave somewhat differently. Although my situation was somewhat different, I can maybe offer some food for thought about all this, and give you some additional things to discuss with your doctors.

    Here are some considerations: If you do an ALND, you will have a higher lymphedema (LE) risk. LE can be a big problem if it develops, but it may be that the additional risk is acceptable if it helps you gain greater local control over the cancer. However, it could be that an ALND may not actually help with that goal as much as it would appear at first glance - only your doctors can really assess that. Radiation provides local control of the cancer in a different way than surgery, and the benefit of radiation may actually be sufficient for you without the extra damage of surgery and added LE risk. Either way, you are relying on systemic treatments to prevent metastatic recurrence, although local control with surgery and radiation is an important piece of that puzzle too.

    I think your own preferences can have an impact too, depending on your lifestyle and hobbies. I am a musician, and I have always asked my doctors to err on the side of less when it came to lymph node removal. Unfortunately, I still had 14 lymph nodes removed and radiation twice, and I did develop some arm LE as a result of all that. I am glad my LE is not worse than it is, and I am glad I did not have even more nodes removed. In my case I had a metastatic recurrence anyway, but I am glad that I preserved the function of my arm insofar as it was reasonable to do so. These are not easy decisions, but I'm wishing you the best whatever you decide.

    I think your doctors will be your best resources on this, but don't be afraid to let them know what is important to you.

    Heart


  • Jalia
    Jalia Member Posts: 1
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    This is exactly my situation. Had 4 out of 6 lymph nodes positive after my surgery (double mastectomy and SLNB). Finished chemo in February. My surgeon wants to remove all lymph nodes next Tuesday. I am afraid I will have to risk having lymphedema, I am supposed to have radiation after all my surgery. Was diagnosed with triple negative stage IV at 36 years old. The cancer responded well to the chemo but, just disappointed with this lymph node situation and trying to understand the point of removing them all then doing radiation. What is the point of radiation when chemo didn’t kill all the cells?


    Don’t mind me. Just a bummed lady over here

  • Nikkyb09
    Nikkyb09 Member Posts: 7
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    @Jalia Sorry it is just taking me now to see your post. How did your surgery go? (if you had it)

    I ended up last minute switching to a different hospital that performs Immediate lymphatic reconstruction, after the lymph node dissection. They were able to reroute 3 lymphatic vessels into a nearby vein. The procedure is done to help prevent lymphedema. I think so far, so good but I know lymphedema can show up at any time. I think my only issue now is potential cording, I'm not sure if thats what it is or not. But this can be taken care of with PT or stretching. Regardless, I will say I am happy with my decision. I had the dissection, and 7/25 lymph nodes came back positive still. So glad I went with my gut.