BIA - ALCL concern for Prophylactic Reconstruction

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baddy247
baddy247 Member Posts: 5
edited July 2019 in Breast Reconstruction

Hi ladies,

I tested positive for the pten gene mutation in August last year and is seriously considering getting a preventative mastectomy with immediate reconstruction going forward. I had lumpectomy and radiation done to my left breast in April 2016. All of the plastic surgeons I saw offered silicone implants and the only way to detect for BIA - ALCL is self-assessment. While this does not seem too convincing for me, I am hesitant to proceed with the preventative surgery given the fact that I am currently getting yearly annual checkups (MRI/ultrasounds) as opposed to me self-assessing for BIA-ALCL symptoms. I know I am just overly concerned but the probability of the pten gene mutation was 1 in 200,000 and the probability of BIA-ALCL is 1 in 300000 or even 1 in 3000 in other reports. As you can see, I am not good with probabilities. Does it make sense for me to proceed with the surgery knowing the risk for BIA-ALCL? Can anyone here please share their opinion? Thanks in advance.

P.S: I am just at a lost of what to do. I know I need the surgery but the hype of BIA - ALCL makes the decision so much harder :(



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  • Beesie
    Beesie Member Posts: 12,240
    edited July 2019

    To my understanding, the breast cancer risk for those who have the PTEN mutation is in the range of 67% - 85%.

    The risk of BIA-ALCL, in the worst case scenario I've read about, is 0.2%. This is based on the findings of one doctor only and most other estimates put the risk to be much lower. And note that this specifically for textured implants. For smooth implants, the risk is even lower - a fraction of a fraction of a percent.

    Breast cancer screening is unfortunately not as effective as we'd like to believe. Even MRIs sometimes miss a breast cancer. And even breast cancers that are found while small and early stage can still be aggressive and might present a significant risk of metastasis. Even early stage cancers may require chemo.

    BIA-ALCL, on the other hand, can be detected through self exams and simply by being watchful for changes in the reconstructed breast. If BIA-ALCL develops, so long as it is caught early, in most cases all that is necessary is removal of the implant.

    What this means is that a diagnosis of breast cancer presents a much greater risk than a diagnosis of BIA-ALCL, and breast cancer is both more difficult to detect (even with extensive screening) and generally requires much more difficult treatments. The risks associated with breast cancer and BIA-ALCL are worlds apart.

    If the idea of implants is stopping you from taking action, have you considered other reconstruction options or going flat?

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