Opting out of SLNB

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TornadoDeva
TornadoDeva Member Posts: 6
edited October 2018 in DCIS (Ductal Carcinoma In Situ)

I'm just wondering if there are any other ladies out there that have opted out of the sentinel lymph node biopsy?

I was diagnosed on 9/14/18 with DCIS high-grade on my left breast only. I have decided to do a bilateral simple mastectomy so I don't have to go through any of this again or worry about other breast cancers forming. My doctor just informed me that the chances of the DCIS getting to my nodes is less than 1%. I see the SLNB as an unnecessary risk for an incurable issue of lymphedema. I realize that the one and only to time to check the sentinel node is before the breast is removed.

Your thoughts?

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  • LiveWellToday
    LiveWellToday Member Posts: 35
    edited October 2018

    I agree with you. I lean towards minimal approach because of past mistakes. Our medical system over treats.

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  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited October 2018

    you do what's best for you. I had my lymph nodes tested and removed because I wanted the most protection and the most aggressive treatment possible for my DCIS. However, I did Develop a very mild form of lymphadema which Brought me to a specialist who performedaggressive PT. So.. it's definitely not without risk.

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  • DATNY
    DATNY Member Posts: 358
    edited October 2018

    Doesn't SLNB involve the sentinel node only? In this case risk of lymphoderrma is low. I had level 1 lymph nodes removed, they were 10 in total, and that is different from SLNB based on my understanding.

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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited October 2018
    TornadoDeva,

    I am a cautionary tale. I went in with DCIS, but was more afraid of lymphedema than cancer, so refused SNB. Came out with IDC. Most days I don't regret my decision.
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  • TornadoDeva
    TornadoDeva Member Posts: 6
    edited October 2018

    Pi-Xi... What was your treatment plan then, after you found out that you had IDC?

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  • TornadoDeva
    TornadoDeva Member Posts: 6
    edited October 2018

    DATNY... It can still cause lymphedema though. That scares me more than anything.

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  • Legomaster225
    Legomaster225 Member Posts: 672
    edited October 2018

    I have a different take on this. I had a BMX and while nothing was identified in my left breast even after 2 MRI’s, mammo, CT, and ultrasound the pathology came back with 8mm IDC in what I thought was my prophylactic breast. How does that even happen?? I didn’t really opt out but really wish we had tested the sentinel node. It would have made the decision regarding Radiation clearer and I will never know if it had spread to the lymph nodes. So far so good but I do regret not having that peace of mind. I did have SNB on my known cancer side.
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  • akmom
    akmom Member Posts: 272
    edited October 2018

    TornadoDeva, I had a BMX as well; was diagnosed with DCIS in both breasts and due to previous lumpectomy and radiation on the right was told MX was only option, so decided to have both removed and be done with it. My surgeon said he would not do a sentinel node biopsy because it was not necessary for DCIS. Although I was concerned that there might be invasive cancer hiding in there (having dense breast tissue) I thought it was his decision to make and didn't question it.

    Guess what, a small amount of invasive cancer was found (along with a lot more DCIS than the mammogram and biopsy suggested). Surgeon said to go back in after the fact and try to do a lymph node biopsy would be 'overkill' and oncologist agreed. My treatment plan is Letrozole for 5 years.

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  • TrmTab
    TrmTab Member Posts: 832
    edited October 2018

    I had two LXs before MX and allowed the node to be dyed but not taken...if the immediate pathology was more than DCIS they would be able to take the node, but with only DCIS after biopsy and two LXs I didn't want LE and didn't want to simply take the node.  No other pathology and no LE for me, can do planks and push up all I want to without fear of that side effect!  And I seem to get every side effect possible (the Arimidex is eating my bones) so I am very grateful my surgeon was willing to go this way.

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  • TornadoDeva
    TornadoDeva Member Posts: 6
    edited October 2018

    I appreciate everyone's responses. It's great to see both sides of choices.

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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited October 2018
    TornadoDeva, I paid to have the Oncotype DX and with the result being 12, the oncologist said no chemo recommended (wasn't planning to do it unless the recurrence score came back high anyway). I had already started on tamoxifen in the interim. A big reason for having BMX was to avoid that, but what can a girl do?
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  • LAstar
    LAstar Member Posts: 1,574
    edited October 2018

    Some surgeons will find the sentinel nodes during your MX and mark them so they can found later if needed. I had only 3 nodes taken but I deal with LE regularly. After 6 years it has spread to my breast and I have had cellulitis recently too. It would be great to avoid this if possible.

    https://pinklotus.com/powerup/breastcancer101/prop...


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