Sentinel Node biopsy for prophylactic double mastectomy

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tangerinequeen222
tangerinequeen222 Member Posts: 21
edited March 2015 in Surgery - Before, During, and After

Hi, I just learned that I have the BRCA2 mutation. I'm 42 and am planning on having a PBM. My surgeon is recommending a sentinel node biopsy as part of the surgery - as a precaution - because an MRI sometimes misses things (it's not 100% the way the sentinel node biopsy is). I'm scared about two things: 1. the rest of lymphedema and 2. the idea of putting a radioactive injection into me when I don't have cancer (does my body need to process/metabolize that radiation). Does anyone have any insight? My surgeon said that 6% of women who do a PBM end of up having cancer and that if she were to find cancer in the breast tissue and not have done the biopsy, she'd have to go back in and that would put me more at risk for lymphedema. I'm wondering how many women opt to do this biopsy. Maybe it's because of my age/she's being overly cautious? Any advice is much appreciated!

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2015

    You ask a good question. You may want to post in the BRCA Forum as well BRCA positive. Also, have you considered getting a second opinion from another surgeon?


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  • tangerinequeen222
    tangerinequeen222 Member Posts: 21
    edited March 2015

    Thanks, I just posted over there and got a response. I'll keep checking. All the surgeons at this hospital do the SNB as a precaution. They've published articles on it and feel pretty strongly about it, though I could always tell them no, but then you're always left with "what if..."

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  • horsemom
    horsemom Member Posts: 96
    edited March 2015

    tangerinequeen

    I was worried about the same thing. I also had a BMX. My BS used the radioactive dye to find the sentinal nodes but then marked them with a clip. If they had found invasive cancer they would have then gone back in for the marked nodes. This would have been a second surgery but I thought the chances were on my side.

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  • tangerinequeen222
    tangerinequeen222 Member Posts: 21
    edited March 2015

    I wonder if the radioactive dye is even safe. Maybe that sounds crazy, but I worry about putting radiation into my lymph node system, esp. when I don't have cancer. Hmmm... Thanks for your feedback. I'm so torn on this.

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  • ndroby
    ndroby Member Posts: 104
    edited March 2015

    Hi there,

    I opted for the bilateral SNB when I had my mastectomy for peace of mind. I did the blue dyes and it was easy for the surgeon to find the sentinel nodes. Both were negative. Minimal exposure to radiation as compared to being outside in the sun.

    Very strong family history of breast cancer in maternal grandmother. My mom died at the 33 & my sister was diagnosed with breast cancer at age 56. I'm relieved and after 14 breast biopsies starting at the age of 14, I can finally move on at the age of 55!

    My surgeon told me my risk of finding a hidden cancer was 20%…I opted for the biopsies of sentinel nodes! Best wishes with your decision.

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  • Ariom
    Ariom Member Posts: 6,197
    edited March 2015

    Hi tangeriinequeen, although I didn't have a prophy Mx, I was in a similar position, in that my Surgeon was concerned that there may have been an invasive component to my DCIS, so he told me that he couldn't in all good conscience, not do a SNB with my Umx. He explained that taking one node was better than risking having to do an Axillary clearance, if the final pathology came back with surprise in it. Once the breast is gone, there is no way to find the sentinel node. I weighed it up and decided he was right.

    When it comes to the radioactive dye etc, unfortunately, it is the only way to do these tests and the amount used is miniscule.

    I wish you all the best with your decision, let us know how you get on.


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  • tangerinequeen222
    tangerinequeen222 Member Posts: 21
    edited March 2015

    Thank you!

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  • RV6gal
    RV6gal Member Posts: 331
    edited March 2015

    Hi Tangerinequee, I had the SNB done during my UMX (it is standard practice here) and I am glad it was. While no cancer was detected in the lymph nodes prior to surgery through diagnostic testing, they did find micro metastases in 2 of the 5 nodes removed.

    These decisions are tough because they are never clear cut but I wish you the best weighing your risks and comfort level as you make up your mind about this one!

    Wendy

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  • tangerinequeen222
    tangerinequeen222 Member Posts: 21
    edited March 2015

    Thank you so much for sharing, RV6gal! Were you afraid of the risk of Lymphedema? Have you experienced any symptoms as a result?

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