SLNB before BM? Not sure what to do.

GKM71
GKM71 Member Posts: 4
edited July 2017 in DCIS (Ductal Carcinoma In Situ)
  • I will be going in for surgery June 6th to have a bilateral mastectomy with delayed recon. I have DCIS, intermediate to high grade. I have a PALB2 gene mutation as well. My biopsy also found ADH and ALH. So a few things going on. I'm trying to decide whether I will do SLNB before my surgery. I'm so scared of getting lymphadema. My surgeon said she's ok if I chose not to, but that it's ultimately up to me. She is not requiring it. I'm scared to do itdue to the increased risk of lymphadema. But I'm also worried about the pathology coming back with an invasive cancer and not having it done. Any thoughts?
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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2017

    Why not just do the SLNB with your BMX? I wouldn't let fear of lymphadema keep you from getting that relatively minor surgical procedure. With SLNB, there is a small chance of lymphadema, but it's unlikely. Heck, I had all 20 of my Levels 1 and 2 lymph nodes out, and I don't have lymphadema. At BCO.org, the breast cancer patients who have had problems or complications are over-represented. Don't assume that they are the norm. Good luck!

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  • Beesie
    Beesie Member Posts: 12,240
    edited May 2017

    Three questions:

    1) Have you had an MRI? While nothing is fool-proof, MRIs are probably best at identifying invasive cancer vs. DCIS.

    2) Is the surgeon recommending the SNB on both sides or just the cancer side? Usually it's just done on the cancer side, particularly if the patient has had an MRI that shows no concerns on the prophylactic side.

    3) Why is the surgeon suggesting that the SNB be done as a separate procedure, rather than at the same time as the mastectomy surgery? Usually the SNB is done at the time of the MX, unless there is a specific reason why a positive SNB result will change the surgery and/or immediate reconstruction plan.

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  • GKM71
    GKM71 Member Posts: 4
    edited May 2017

    Thank you everyone who has responded. Let me clarify... I was a bit confusing in my original post. :) I had an MRI in March and it was clear. My surgeon is not recommending I do the SNB. She's giving me the option to do it. She told me that with my findings she would feel comfortable enough skipping it, but it is ultimately up to me. She would do it if I chose at the time of the BX.

    I just worry about finding something more invasive after the surgery and kicking myself for not doing the SNB. But, I REALLY don't want to take the risk of doing it either. Just curious of how many find invasive after a BX and have to deal with a larger lymph node removal due to not doing the SNB. I know it's a hard question to answer

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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited May 2017

    GKM71,

    I was in a similar situation. I was diagnosed with ADH after a core needle biopsy and then DCIS after an excisional biopsy. I opted for BMX (after a great deal of thought and turmoil) due to the large region of microcalcifications but I was petrified of lymphedema and my BS was comfortable enough for me to forgo the SNB. Well, it turned out there was "somewhat surprisingly" 1.4 cm of IDC in the mix. Do I regret it? Not really. Oncotype came back as 12 and I did agree to tamoxifen. Am I taking a big risk? Probably, but after reading these boards for the last year, the only thing that is clear is that there are no guarantees.

    I sincerely hope that the pathology remains DCIS and that you reach a decision with which you are comfortable.

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  • Sitti
    Sitti Member Posts: 230
    edited May 2017

    GKM71 - I was diagnosed with high grade, hormone negative DCIS. Initially had a LX but needed to go back in and get a better margin in one area. I did not have an MRI but the imaging I did have showed the area 2.5 cm, turned out to be 4.4 cm. That bothered me. I just couldn't help wondering if there was other "stuff". I ultimatedly decided against the reexcision and had a BMX (as Pi-Xi said, after a great deal of thought and turmoil). My surgeon did just the SNB at time of surgery. While nothing invasive was found the path report did show LCIS and ALH, no more DCIS though. I know it's a dilemma, I kept asking if there was anyway to do the dye, mark the SLN and then come back and get it later if needed but apparently there's not. For me, I was just too concerned there could be an invasive factor but in the end there wasn't. I don't regret my decision. Best wishes in finding a solution you feel is right for you and for a good final path report.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2017

    GKM71,

    Even if they did find invasive cancer during pathology, I don't think your surgeon would go in and take your Levels 1 and 2 lymph nodes, should you choose to check your nodes later. Most surgeons would just take the sentinel node(s) to begin with. My case was unusual because 1) a node had tested positive before chemo, and 2) the radiologist did not put a surgical marker in that node. Hence, when my nodes appeared clear after chemo, no one remembered where it was so the surgeon just took all 20 (and they were all clear of cancer). Ugh. That would NOT happen to you.

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  • GKM71
    GKM71 Member Posts: 4
    edited May 2017

    thanks pixi, sitti and Elaine. Pixi, I hope you are healed and getting past it all. Your situation is what I keep going over in my mind. Did you need chemoor radiation? or do they feel that tamoxifen is sufficient?

    Sitti, I wish they could just do the dye as well, I've asked and no one seems to understand why we'd want that. It's strange. Glad you are well!

    Elaine, I'm sorry you had to have so many nodes taken. I hope you are well now with a couple of years behind you! All my best


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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited May 2017

    After my Oncotype came back low, the oncologist was no longer interested in offering chemo. My breast surgeon told me that if I had had the SNB and it had come back positive, radiation would have been recommended. She is not a big fan radiation it seems, so she supported my decision. After mastectomy nodal mapping only has a small chance of working (I had nipple sparing) anyway, which is why they want to do it before the breast tissue is removed. Also, she would have liked for me to avoid tamoxifen, but with the IDC, I was all in for trying that. She's told me that chemo and anti-hormonals each made a difference in the single digits as an absolute percentage. I couldn't believe it, but she's correct! I would say time will tell if my treatment is sufficient, but it won't. I have seen many cases where every possible treatment is given at early stage and the patient recurs locally or with metastasis. I elected to have the best quality of life I could. I watched both of my parents die from cancer following all the recommended treatments, watched one grandmother throw everything at breast cancer (and get lymphedema from an ALND) and the other ignore it until she landed in the hospital. Tamoxifen gave her a few years and they both died within five months of each other. I know many women have successful treatment, I just think my personal experiences made me question the standard path. I'm very active (was a dancer until recently) and I knew mentally I wouldn't survive lymphedema. Even though the chance was "small" with an SNB - actually larger than any possible chemo benefit, in my case- I wanted to ensure I could live my life as fully as possible, even if the time may be shorter.

    Haven't gotten past it yet. Despite trying to minimize the impact, the cancer experience and associated side effects affect pretty much every aspect of my life. I'm working on it!


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  • LAstar
    LAstar Member Posts: 1,574
    edited May 2017

    I've read of some BS marking the sentinel nodes after they have been identified so that they can be found later if anything surprising comes up in the pathology report. They use thread and/or titanium markers.

    I had 2 nodes removed initially and 1 during a later surgery, and I deal with Stage 0 LE (measureable but not highly-noticeable swelling). It's not a major problem, but it aches and it's something I will have to manage the rest of my life. I always wear a sleeve when flying, gardening, working out, lifting anything, and when I have a cut, bug bite, or hangnail on the affected side.

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  • Sitti
    Sitti Member Posts: 230
    edited May 2017

    LAstar - that is what I tried to explain to my BS but he was in no way following what I was saying. The RO on the other hand thought it was an interesting idea.

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  • GKM71
    GKM71 Member Posts: 4
    edited May 2017

    thanks again for all the replies. I had my pre-op today. My BS definitely was leaning to not do the SNB and I agree. I feel at peace with the decision. Like someone mentioned earlier, there is some risk in every decision. I just need to move forward now with confidence and positivity! Thanks again

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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited May 2017

    Wishing you the best, GKM71!

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  • kimred
    kimred Member Posts: 8
    edited July 2017

    If anyone has any leads on... "marking the sentinel nodes after they have been identified so that they can be found later if anything surprising comes up in the pathology report. They use thread and/or titanium markers." please let me know - my BS has no idea what I am talking about! Thanks!

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  • LAstar
    LAstar Member Posts: 1,574
    edited July 2017

    Here's a note from Angelina Jolie's breast surgeon on how they did it with medical literature references. I've read of other BS's who've left a titatnium marker or colored thread near the sentinel nodes so they can be identified years later if needed.

    http://pinklotusbreastcenter.com/breast-cancer-101...


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