Stage 0 and PTen mutation

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Cynthia451
Cynthia451 Member Posts: 9
edited July 2021 in Genetic Testing

Is there anyone out there who has been diagnosed with DCIS and a PTEN mutation? All the doctors I have seen so far except for 1 has suggested a double mastectomy. I really don’t know what to do.

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  • Yogatyme
    Yogatyme Member Posts: 2,349
    edited November 2019

    I don’t know about PTEN mutation, but I have BRCA1 mutation and had the same recommendation. It was explained that the BRCA1 mutation puts recurrence risk at 85% for both breasts, thus the recommendation for bilateral mastectomy. I was stage 1A w no metastasis.You may want to ask about why they are recommending the BMX. I had the BMX as recommended and have no regrets. Best to you.

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  • Cynthia451
    Cynthia451 Member Posts: 9
    edited June 2020

    Hello Everyone,

    I just wanted to give you an update on my situation. I had a lumpectomy on 2/26 and then had a double mastectomy with immediate reconstruction on 5/19/20. I am in the middle of my 3rd week of recovery and I am feeling a kind of pain that I can only describe as a skin pain. It feels itchy and there is lots of chaffing. Also, I have noticed my skin peeling a bit almost like I am recovering from a major sunburn. Every once in awhile I will get these surprise pains that go away very quickly and my skin also feels very tight especially when I get up after laying down. It's almost like I had a face lift, but on my breasts. I have stopped taking the pain medicine because it really isn't doing anything to help anymore and am just trying to get by on tylenol and advil.


    Also, my path report did show that a little cancer was found on my left breast. I am supposed to see my oncologist on June 30th to find out what I have to do next. My whole family seems to think that I am going to be okay now that I have had the surgery. But, I just won't be able to relax until I have seen my oncologist and I also find the skin pain to be quite uncomfortable.


    Thank you for reading!

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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2020

    Cynthia, I'm glad you returned with the update.

    The surprise pains you describe are normal - that's nerve regeneration pain. I remember the first time I got one, I just about jumped out of my chair. But it was over in an instant.

    Skin itching at this point in the process is also usually related to nerve regeneration. I had that too. I never had the chaffing, but from reading here I believe that's pretty common too.

    So are you saying that in addition to the DCIS, you also had some invasive cancer in your left breast? Was the left breast the one with the DCIS?

    Let us know what happens in your discussion with the oncologist. And hopefully the skin pain eases soon. It's all part of the process; none of it is fun but it does progress and change.



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  • Oxbury
    Oxbury Member Posts: 26
    edited July 2021

    Hi, chiming in here even though it's an old post because I also have PTEN and a DCIS stage 0 diagnosis. Scheduled for a skin sparing double mastectomy with sentinel node biopsy on 30 July. Would be keen to hear how you've been going, and whether you've received any other advice on reducing PTEN cancer risk otherwise.
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  • Cynthia451
    Cynthia451 Member Posts: 9
    edited July 2021

    Hi! I had a double mastectomy and I had my implants put in at the same time on 5/19/20. So, it's been about 14 months. I still get the surprise pains at times and I would say that may left breast still looks a little different than my right. The first time I noticed that, I went right back to my oncologist and breast surgeon because I thought that maybe the surgery didn't work. My doctors immediately sent me for a biopsy and mammogram and thank goodness found nothing more than just lots of scar tissue as that was also the side that I had my lumpectomy on. Even so, I am still careful about never missing my checkups.


    Not sure if you are having to take medicine for the next five years. I have to take it and it's called arimidex. (I just take 1mg). I have been on it actually since a few months before my surgery because my surgery was postponed twice due to covid. (I never had it, thank goodness. The hospital was just not allowing surgeries of any kind for the longest time.) For over a year, my only side effects were hot flashes, poor sleep, and poor concentration. I asked my oncologist about it and she said that yes that can happen but I should still try to stay with it because it is an estrogen blocker and apparently that has something to do with bringing on breast cancer and even though I had all the tissue removed in both breasts, the medicine does very well at preventing recurrence.

    About a month ago, I have started getting lots of joint pain. It's not intolerable but certainly noticeable for me. I asked my oncologist about that and she said that yes that can happen too and if it gets to be very bad, she will have me try another medicine. But, otherwise, I should really try to stick with this because she feels that the medicine is better than tamoxifen. I know I could also just stop taking the medicine altogether but I don't want to do that because with my pten diagnosis and my mother's history. (She also had breast cancer but actually passed away due to thyroid cancer.) I just don't ever want to be in a position where I have to ask myself, why didn't I just stay with it.


    I know that this is going to be very hard. The drains were awful. (I wore mine about 2 1/2 weeks. But, once they were off, I was much better.) But, I wanted you to know that even though we don't know each other, I am here and feel to email me anytime and share whatever your feelings are. I will definitely understand. My name is Cynthia and I live in Los Angeles. I was diagnosed at 50 years old and wasn't able to have surgery until almost nine months later. My email is cylevy1@gmail.com. I will pray for you.


    Sincerely,

    Cynthia

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