Posted on:
Nov 1, 2019 05:49AM
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Oct 2019
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6
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Jan 11, 2020
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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farmerlucy
Oklahoma
Joined:
Oct 2011
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Latest activity:
Jan 20, 2020
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Nov 1, 2019 05:58AM
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
Cynthia451
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Oct 2019
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Jan 11, 2020
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Nov 1, 2019 06:10AM
Cynthia451
wrote:
Thank you
MassGirl55
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Sep 2019
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Dec 13, 2019
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Nov 1, 2019 06:13AM
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
10/30/2019
Surgery
Cynthia451
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Oct 2019
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Jan 11, 2020
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Nov 1, 2019 06:19AM
Cynthia451
wrote:
Where does she practice? How do I know she will look at my information
SimoneRC
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Feb 2018
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Jan 20, 2020
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Nov 1, 2019 06:36AM
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
Surgery
4/6/2018 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
Hormonal Therapy
5/6/2018 Arimidex (anastrozole)
Surgery
7/3/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Surgery
4/30/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Surgery
4/30/2019 Prophylactic ovary removal
Surgery
8/6/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
baddy247
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Sep 2018
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Dec 19, 2019
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Dec 19, 2019 09:08AM
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.