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Topic: Stage 0 and PTen mutation

Forum: Genetic Testing —

ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, and mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM)

Posted on: Nov 1, 2019 08:54AM

Cynthia451 wrote:

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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Nov 1, 2019 10:04AM Yogatyme wrote:

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.

Yogatyme Surgery 3/2/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Jun 13, 2020 11:03PM Cynthia451 wrote:

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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Jun 14, 2020 09:16AM Beesie wrote:

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.



“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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