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Topic: Considering prophylactic mastectomy

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

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Posted on: May 11, 2022 11:48AM

Posted on: May 11, 2022 11:48AM

runninglibs wrote:

Here's my history:

November 2018: ADH confirmed via biopsy. ALH discovered in same breast during excision. In the last two years, I have had three more biopsies (thankfully, all benign), the most recent last week for clustered microcalcifications in the other breast. Started low-dose Tamoxifen in October 2021. Had complete hysterectomy in January 2022 due to skyrocketing CA125 and a mass on one ovary. No gene mutations found. My lifetime risk prior to this last biopsy was 64%.

Mentally, my husband and I are exhausted. Two breast biopsies and the ovarian cancer scare seven months has worn us out. We can't keep living like this.

For those who have had a prophylactic mastectomy, how did you finally come to that decision? Thanks!

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May 11, 2022 04:53PM moderators wrote:

Hi runninglibs,

We are sorry to hear about the recent concerns and of course, exhaustion that it brings. We wanted to respond to this post to boost it towards the top in hopes more members can view and respond to you and provide helpful feedback.

Until then, you may find this article on prophylactic mastectomy to be helpful. https://www.breastcancer.org/treatment/surgery/mas...

- The Mods

To send a PM to the Mods: community.breastcancer.org/my/...
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May 12, 2022 10:43AM beginagain22 wrote:

Hi runninglibs,

I’m sorry to hear about the issues you’ve been having, it is so stressful. I am 48 and was diagnosed with IDC in February. It was fairly small and I intended to have a lumpectomy. I did have dense breast tissue that made reading mammograms tough. I was offered genetic testing since I am under 50. It came back with a genetic mutation so I decided to have a double mastectomy and remove the healthy breast as well. I will have a hysterectomy and will remove ovaries later this month. I decided to have an aesthetic flat closure without reconstruction after a lot of soul searching. There are lots of options out there if you do want to reconstruct tho. Lots of support here. Best of luck to you

Surgery 3/18/2022 Cryotherapy (Left); Cryotherapy (Right); Lumpectomy (Left); Lumpectomy (Right); Lymph node removal (Left): Sentinel, Underarm/Axillary; Lymph node removal (Right); Mastectomy (Left): Modified Radical, Nipple Sparing, Partial, Radical, Simple, Skin Sparing; Mastectomy (Right): Modified Radical, Nipple Sparing, Partial, Radical, Simple, Skin Sparing; Prophylactic mastectomy (Left); Prophylactic mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Hormonal Therapy 5/1/2022 Arimidex (anastrozole) Surgery 5/25/2022 Dx IDC, Left, 2cm, Stage IIA, Grade 3, 2/10 nodes, ER+/PR+, HER2-
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May 15, 2022 04:21PM maryscout wrote:

Hi Runninglibs,

I had a really similar profile that you do. ADH, macrocalcifications, ADL found. I've had cancer before (not breast), so I knew that I wasn't looking forward to the extra screenings, Tamoxifen, biopsies, etc. I started looking into the idea of prophylactic mastectomy here, and I broadened my search to learn more about diep flap surgery and where there are centers of excellence on that front. I talked with lots of friends and with former patients, and ultimately decided to go to the New Orleans breast center. It's almost 3 years to the day since I had it done, and I couldn't be more pleased with the results and the peace of mind. Everyone is different and has different and valid approaches for them. For me, this was an awesome decision. DM me if you ever want to talk.

Yours,

Mary

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May 25, 2022 06:58PM k-gobby wrote:

thank you for posting. I have Brca2, so rather then waiting for cancer to show in my other breast, I said remove it.

Ovarian cancer scare? I am 61. They took fallopian tubes and ovaries.

A blood clot in my keg after my 1st sugery slowed my 2nd breast surgery to be removed, but I said thanks God for giving me extra time to say goodbye.

Chemotherapy 8/14/2021 Other Surgery 2/1/2022 Lymph node removal (Left): Sentinel; Mastectomy (Left): Skin Sparing; Reconstruction (Left): Tissue Expander Targeted Therapy 2/1/2022 Talzenna (talazoparib) Targeted Therapy 2/1/2022 Perjeta (pertuzumab)
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May 26, 2022 11:30AM janewhite wrote:

I had a medically necessary mastectomy last year (multiple sites of DICS and failed lumpectomy), and I just had the other breast removed prophylactically. And the repeated screenings are a big part of the reason I'm happy with my choice. I don't want to endure mammograms, callbacks and biopsies for the next however many years, even if I never wind up with cancer. I had one last mammogram a few weeks before the surgery, and of COURSE I needed follow-up scans.

No more. No more breast screenings. It's liberating.

Surgery 8/5/2021 Lumpectomy (Left); Lymph node removal (Left): Sentinel; Reconstruction (Left); Reconstruction (Right) Surgery 8/24/2021 Mastectomy (Left): Simple Surgery 5/19/2022 Mastectomy (Right): Simple Dx DCIS, Left, 1cm, Stage 0, Grade 3, ER+/PR+
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May 27, 2022 01:41AM k-gobby wrote:

Janewhite.

I never did a mammogram until the one in July of 2021. My 2nd was a couple weeks ago. It was to be before my surgery on May 31st. This was to remove the good breast. Today, down because of the blood clot, I love too it was my last mammogram. Months before the likely new date for sugery. As a women said to me after my left side mastectomy, we only have two!!! What we say at the check out of our Dr's office!


Chemotherapy 8/14/2021 Other Surgery 2/1/2022 Lymph node removal (Left): Sentinel; Mastectomy (Left): Skin Sparing; Reconstruction (Left): Tissue Expander Targeted Therapy 2/1/2022 Talzenna (talazoparib) Targeted Therapy 2/1/2022 Perjeta (pertuzumab)

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