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Topic: Stage 0 DCIS with Pten mututation

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Nov 1, 2019 08:49AM

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 have suggested a double mastectomy as I also have a family history of breast cancer. But, I really don’t know what to do. I am scared that I will die no matter what I decide.

I know that you can’t tell me what to do, but I am really hoping to find people who have similar stories to me and see how they decided to handle thing

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Nov 1, 2019 08:58AM farmerlucy wrote:

I don't have a known mutation, but I do have a scary family history. I had a prophylactic mastectomy a bit too late. I did twenty years of high risk screening. Without a doubt I wish I had done the mx sooner. Once it is invasive you always have that chance of it recurring. You always have the uncertainty. Finding cancer at stage zero allows you to be proactive. Compared to the invasive cancer diagnosis the bilateral mastectomy mattered very little to me. It is what it is. Take your time, do your research, you'll know what options are right for you.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Nov 1, 2019 09:10AM Cynthia451 wrote:

Thank you

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Nov 1, 2019 09:13AM MassGirl55 wrote:

Cynthia451 - I don't know where you live but perhaps you could send your records and pathology slides to Dana Farber in Boston? I don't have any idea what they charge but insurance may cover! Good luck and do keep us posted.

Dx 9/26/2019, DCIS, Left, Stage 0, Grade 2, ER+/PR+ Surgery 10/29/2019 Surgery
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Nov 1, 2019 09:19AM Cynthia451 wrote:

Where does she practice? How do I know she will look at my information

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Nov 1, 2019 09:36AM SimoneRC wrote:

Johns Hopkins also does second look. And yes, invasive cancer stinks. Knowing my family history, how inadequate imaging can be for dense breasts, and if I had known about my mutation before my diagnosis I would have had prophylactic mastectomy. Good luck with making your decisions. I know it is scary and I am hoping all goes smoothly for you!

ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy
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Dec 19, 2019 12:08PM baddy247 wrote:

I was diagnosed with PTEN mutation in August of last year. I had breast cancer (invasive/DCIS) in March 2016. I chose lumpectomy/radiation/hormone therapy because I didn't have the BRCA gene. Two years after, the medical team decided to test me for the other 25 genes associated with breast cancer and apparently I was positive for pten. In March 2019, I had a hysterectomy as I was diagnosed with uterine cancer. Thyroid was removed in 2009. I am now thinking of getting a prophylactic mastectomy with reconstruction sometime next year. Just take it slow. Being placed in the high risk column definitely is not fun.

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