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Topic: Do I qualify for bilateral mastectomy?! Help!!

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

Posted on: Dec 8, 2018 07:29AM

SarahParks00 wrote:

I had taken the BRCA1 testing many years ago and my sister & I are almost positive she said I came back positive for the abnormal gene? She scheduled me to have mammograms every 6mos. My mother had ovarian cancer, my Grandmother and great grandmother both have/had breast cancer. My doctor just recently brought up a bilateral mastectomy. My thing is, I’m sure he will pullback records, but however off i were mistaken about the results of my BRCA1 (almost positive I’m not mistaken) would i still qualify for the bilateral mastectomy? I have CKD and cant risk anything taking me by surprise, my kidney wouldn’t hold up through that. As painful as my breasts stay, I wouldn’t be in a hurry to get reconstructive surgery. Help please if you have information! TNA

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Dec 8, 2018 11:33AM MelissaDallas wrote:

Sarah, if you were tested years ago it was probably through Myriad. You can call or emailthem about getting a copy of your old test results.

Myriad Customer Service Center

If you are a patient or healthcare professional and have questions regarding Myriad products, please contact the Myriad Customer Service Center. Our team of representatives and highly-trained medical specialists look forward to helping you.

Call us

Tel: (800) 4-MYRIAD (800-469-7423) – toll-free

Fax: (801) 584-3615

Write to us

Email: cscomments@myriad.com

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Dec 8, 2018 11:40PM Kerri_Oz wrote:

I'd definitely try and get hold of a copy of those test results. If your doctor mentioned mastectomy, he must have had a reason for it. Maybe make an appointment with him and sit down and discuss his reasoning, and go over the pros and cons of it all. I'm 10 days post bilateral mastectomy without reconstruction and don't regret it one little bit. My lifetime risk of cancer according to the IBIS calculator was 64% and I didn't like those odds at all. Take your time, gather all the facts, consider all the possibilities, and then make the decision that makes the most sense to you and feels right in your gut.

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Dec 9, 2018 04:35PM SarahParks00 wrote:

Is 64% your overall in the lifetime? Mine is 59.8% in a lifetime, but I didn’t add all ofmy complete family history. My sister tested had a normal brca1 testing but with the family history her IBIS was 32.4% maybe? It might have been a tad bit higher, do you know if she would also qualify for the bilateral mastectomy? She’s terrified because those chances are still so much higher than the average woman?

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Dec 9, 2018 11:25PM Kerri_Oz wrote:

Yes, 64. I haven't actually had genetic testing, but have a long list of other risk factors, like family history, dense breasts, LCIS/ALH, etc. That, plus the anxiety I have around tests, biopsies and waiting for results convinced me I was doing the right thing. The fact that the Australian Medicare system approved the surgery validated/vindicated my decision. I don't know how things work where you live, and when you talk about qualifying, I'm guessing you're talking about health insurance? The only sure fire way to find out would be to find a supportive surgeon, apply and see what happens.

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Dec 17, 2018 02:00PM SarahParks00 wrote:

My maternal grandmother, paternal great grandmother and paternal grandmother had it, my paternal aunt had DCIS (?), and my maternal side also has history of Ovarian cancer. I’m stressing out, wondering if that is considered high history. He mentioned wanting to do a bilateral mastectomy, but I’m not sure if that’s means ONLY if patients be have brca1,2.

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Dec 17, 2018 02:57PM Lula73 wrote:

yes you likely would still qualify with that history alone. Recon can be done during the mastectomy surgery either with pre-pec implants or natural tissue recon. You’re under already, so why not go ahead and take care of it - you go in with breasts and come out with them. Much easier on the psyche and fewer scars/easily concealable scars with immediate recon. Here’s a helpful link to 2 videos made by 2 of the best in the breast business:

https://www.breastcenter.com/2018/05/01/i-wish-id-known-dr-ordonye-speaks-to-ypo-about-modern-breast-cancer-care/

https://m.youtube.com/watch?v=X7rT96CpX5c



-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)

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