Failed SLN mapping prior to surgery - whats next?

Hello! Today prior to my lumpectomy, I underwent lymphoscintigraphy to locate the sentinel nodes for a SNB. Unfortunately, most likely due to my previous mastectomy in the same breast, the procedure failed to identify a drainage pattern to a nodal basin. As a result, no nodes were removed.

Wondering if anyone else has experienced this, and if so, what was recommended next? Was an ALND recommended? Does the pathology report, once received, help determine whether an ALND is recommended?

From my understanding it's somewhat rare for this to happen, so I'm not expecting many responses, but appreciate any & all feedback.

Comments

  • mavericksmom
    mavericksmom Member Posts: 1,275
    edited April 2023

    Hi! Not sure this will be any help but I had a failed SNB in 2003 when I had my first Dx (IDC) My surgeon did a lumpectomy on my left breast and removed the first level (fat pad) under my arm containing 24 nodes. I ended up having a second lumpectomy for clean margins, Chemo and radiation . I was offered Tamoxifen but refused.

    In 2019 I had a left mastectomy due to Dx of ILC. No nodes removed because of the 24 removed in 2003. I took Letrozole but only stayed on it for six months.

    October of 2022 I had a right mastectomy due to DCIS with microinvasion. This time two lymph nodes were removed.

    Because I have lymphedema in my left arm and have some swelling in my right arm, my PS who is also a lymphedema specialist, did Lymphoscinitigraphy on both arms when I had my exchange surgery last month. It went well. It was to see how well my lymphatic system was working. My right arm is good but the left is not.

    I am back on Letrozole for the 2019 ILC.

    When my SNL in 2003 failed, the tracers didn't go to any node, I found out the same thing happened to a lot of women I know. I thought the issue was with my surgeon, but I know others who used different doctors and hospitals and their SNB failed to. I think it is more common than we think.

  • redemptivesufferer
    redemptivesufferer Member Posts: 85
    edited April 2023

    M’sM, thank you for sharing! I’ve found very little on it, other than a study indicating positive nodes are more likely present when the tracer fails to locate nodes. (I assume they’re eventually discovered via ALND.) But the study I saw didn’t mention if researchers included women with previous breast surgeries - which can also impede the tracer from reaching SLNs. I hope you are doing well, considering all you’ve been through

  • startnew12212
    startnew12212 Member Posts: 45
    edited April 2023

    Mine failed, as well. My surgeon couldn’t see the sentinel node, so she simply took out ONE node which had isolated tumor cells. This made me incredibly nervous that only one node was taken. I went to a 3 different oncologist for their opinion on how to proceed because it was so uncommon. I was already going to have to do chemo; the question was what if radiation was needed. 1 said yes to do it, 1 said no and another was undecided. It was a stressful process, but I decide to be safe and do the radiation. My other option was do nothing which freaked me out or go back in and have more nodes taken out, which wasn’t advisable I’m happy with my decision

    I’m sorry this happened to you, too.

  • redemptivesufferer
    redemptivesufferer Member Posts: 85
    edited April 2023

    Startnew,

    What a difficult position to be in! I commend you for going to three different oncologists for their opinions. Not only is it a hassle adding more doctors appts to your schedule, but it delays treatment, and typically we just want to get it started and over with.

    I just met with my breast surgeon Thursday, who said we weren't going to go back in and remove any lymph nodes. Would you believe I can't remember her reasoning? I think I was in shock. Then she presented me with my MammaPrint results, which indicated I was high risk for recurrence and would benefit from chemo. The next day, I received a letter from insurance denying to cover cost of the MammaPrint because no nodes were taken. Guess I'll be on the phone w/insurance and doc's office Monday trying to resolve this.

    To quote Gilda Rander's Roseanne Roseannadanna character (for those who remember her) "It just goes to show ya, it's always something. If it's not one thing, it's another."

  • redemptivesufferer
    redemptivesufferer Member Posts: 85
    edited April 2023

    Startnew,

    What a difficult position to be in! I commend you for going to three different oncologists for their opinions. Not only is it a hassle adding more doctors appts to your schedule, but it delays treatment, and typically we just want to get it started and over with.

    I just met with my breast surgeon Thursday, who said we weren't going to go back in and remove any lymph nodes. Would you believe I can't remember her reasoning? I think I was in shock. Then she presented me with my MammaPrint results, which indicated I was high risk for recurrence and would benefit from chemo. The next day, I received a letter from insurance denying to cover cost of the MammaPrint because no nodes were taken. Guess I'll be on the phone w/insurance and doc's office Monday trying to resolve this.

    To quote Gilda Rander's Roseanne Roseannadanna character (for those who remember her) "It just goes to show ya, it's always something. If it's not one thing, it's another."