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All TopicsForum: Surgery - Before, During, and After → Topic: How did you decide for or against a prophylactic mastectomy?

Topic: How did you decide for or against a prophylactic mastectomy?

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Mar 3, 2018 06:39AM

star2017 wrote:

I thought I had made up my mind to go ahead with it but now I’m struggling. As I approach the time for reconstruction on one side, I’d like to make a decision. I’d appreciate any thoughts and considerations you’re willing to share.


I am brca2+. 38yo. Mother

Dx@37
IDC & DCIS in rt breast, ER/PR+, Her2-
Genetic: BRCA2+
Single mx with TE, 8cm tumor, 4/8 +nodes
Chemo: Dose-dense AC+ T
Rt implant, left prophylactic mx with TE
Next: Radiation
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Mar 3, 2018 08:55AM LisaCincy wrote:

My original tumor was highly aggressive and TN tumors are also known to become chemo-resistant over time. I was very lucky that it grew close to the surface of the breast so that I could detect it with a self-exam. Had it grown closer to the chest wall, I might have missed it, and then it might have grown and spread before a mammogram detected it. And even though I tested negative for BC genes, I still have a pretty compelling family history, with 3 of 4 aunts + 5 first cousins getting BC, I wasn't going to take the chance of getting it again in my non-diseased breast and having to go through chemo and the worry all over again.

3 days ago, I got a mastectomy on my right and a prophylactic mastectomy on my left.

FWIW, had I tested positive for any of the BC genes, it would be a no-brainer: off they'd come. (I'd also have them take out any other at-risk parts, such as ovaries, if that was indicated.) BC is a horrible disease, and if the odds were very high that I'd get it, I'd definitely go the prophylactic route. I personally know 3 ladies who have done it, and not one of them regret it. In fact, they found it liberating not to have to get mammograms and MRIs all the time.

Take care and good luck with your decision.


"Fear is not an option. Never be a victim." -Diane von Furstenberg's Mom, a Holocaust survivor. **Note: Stage is 1A (old method) or 1B (new 2018 method) Dx 9/25/2017, IDC, Right, 1cm, Stage IB, Grade 3, 0/4 nodes, ER-/PR-, HER2- (FISH) Chemotherapy 10/2/2017 AC + T (Taxol) Surgery 2/28/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 3, 2018 09:05AM mustlovepoodles wrote:

I have two rare gene mutations which cause breast cancer, PALB2 and Chek2. My lifetime risk of BC is 45+% and my tumor was PR-, a more aggressive type. A no brainer.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/3/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/19/2016 Hormonal Therapy Femara (letrozole) Surgery
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Mar 3, 2018 11:12AM Lula73 wrote:

I opted for BMX as well. My risk level was high due to previous rads to the chest for Hodgkin’s lymphoma. BC in one and microcalcifications in the other. Could have opted for UMX & lumpectomy but did not want to deal with this again down the road, didn’t care to deal with stress and anxiety of hyper surveillance on the other breast, symmetry, and I was doing DIEP flap recon (natural tissue, no implants) which you can only do once. If I had UMX and had to have MX on the other side down the road that recon option would not be available. I also thought it would be strange to have the two sides feel different from one another. The recovery from BMX vs UNX really isn’t any different. You still having lifting restrictions, sleeping position restrictions, you’re still easily fatigued for the first few weeks, driving restrictions, etc. I’m 45, married to a wonderful man, actively involved mother to 2 boys (23&13) and a Mimi to my 2 year old granddaughter with a grandson due in 2 weeks. I work full time and up until very recently served in leadership roles on the boards of 2 non-profit organizations (term limits). If I can do it with all this going on, anyone can.

-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
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Mar 3, 2018 12:50PM star2017 wrote:

thank you everyone. Having to go through chemo again or risk it spreading into an area that’s harder to remove are my biggest worries. Of course there are no guarantees, but I do think I’ll go forward with it.

Dx@37
IDC & DCIS in rt breast, ER/PR+, Her2-
Genetic: BRCA2+
Single mx with TE, 8cm tumor, 4/8 +nodes
Chemo: Dose-dense AC+ T
Rt implant, left prophylactic mx with TE
Next: Radiation
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Mar 3, 2018 01:02PM CBK wrote:

I too am Brca 2+, once I received that diagnosis, there wasn't an option in my mind. Having extremely dense breast tissue would have required that I go for regular MRI testing, no thanks. My only regret is I didn't do this before a cancer diagnosis. The statistics are simply not on our side being Brca2+. I hope you find peace with your decision.

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/11/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/21/2017 AC + T (Taxol) Surgery 1/24/2018 Prophylactic ovary removal Hormonal Therapy 2/17/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant
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Mar 4, 2018 01:08PM Peregrinelady wrote:

My breast surgeon recommended that I remove remaining breast and ovaries even though I tested negative for BRCA genes because of family history. Twin sister passed of MBC and father from pancreatic. It does give you a little peace of mind.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Mar 4, 2018 05:40PM - edited Mar 4, 2018 05:57PM by farmerlucy

Nearly twenty years of high risk screening was incredibly stressful and expensive. I always knew if something came up I'd have the PBM. ALH and ADH were found. I insisted INSISTED on the PBM. Too late though. I already had breast cancer and every screening method missed it.

The best feeling in the world was waking up from surgery thinking I had outrun the beast. The worst feeling was when my doctor called me three days later and said I hadn’t.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/20/2012 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 3/10/2012 Lymph node removal: Sentinel Surgery 7/21/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/13/2015 Prophylactic ovary removal
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Mar 4, 2018 09:56PM star2017 wrote:

Dear PPs,


Thank you so much for your thoughtful responses. You've really helped me feel better about my decision to move forward.

S

Dx@37
IDC & DCIS in rt breast, ER/PR+, Her2-
Genetic: BRCA2+
Single mx with TE, 8cm tumor, 4/8 +nodes
Chemo: Dose-dense AC+ T
Rt implant, left prophylactic mx with TE
Next: Radiation
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Mar 6, 2018 09:16PM beach2beach wrote:

I too opted for a double Bmx . 51, mom of 3. Was offered a lumpectomy. Having had dense breasts and previous biopsies, I just couldn't mentally handle the increased surveillance that would ensue and I'd constantly be worried it would pop up on the other side too. For me it was a no brainer. I'm a worrywort. I've not regretted the choice to do both. Hope you feel confident in whatever you ultimately choose.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 15, 2018 12:28AM Lpartida74 wrote:

hello I had found a lump in my breast in June of 2017. Had all tests done on it and all came back negative. My oncologist suggested that I have genetic testing since I have a family history of breast cancer. The testing took about 2 weeks. I received the call that I was positive for the CHEK2 gene mutation and it’s a high risk cancer gene.

My oncologist had given me all my options and I have decided to go with a double mastectomy and reconstruction. My surgery is scheduled for next month. I too was very confused about the surgery and I didn’t know if I wanted to go through with such a big surgery. As of right now I will go through with the surgery. I’m still very afraid.




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Apr 15, 2018 04:09AM Moderators wrote:

Hi Lpartida,

Welcome to the forums!

We're sorry that you're circumstances brought you here but glad that you found us. Deciding on double mastectomy and reconstruction are very personal and individual decisions so we suggest you get well informed before making a final decision.

Here is some information from our main site that you may find helpful:

- Prophylactic Mastectomy

- Prophylactic Mastectomy and Reconstruction Video Series

- Is Breast Reconstruction Right for you?

We hope this helps!

The Mods.

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 15, 2018 08:45AM Okkate75 wrote:

I tested positive for CHEK2 and decided on lumpectomy and radiation, not mastectomy. I was not and am not ready to remove my breasts. My care team was absolutely supportive of this, and I'm at a big research hospital with a team I trust. So little is known about my particular variation of this gene, and I'm not willing to take on the risks of surgery for it until I have to. I think this is a good decision, and if I'd opted for a double mastectomy, that also would have been a good decision. This is all so hard, and we're all doing the best we can with limited information. Good luck on your road!

Dx 11/17/2017, IDC, Left, <1cm, ER+/PR-, HER2- Surgery 12/7/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/5/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Radiation Therapy 5/15/2018
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Apr 15, 2018 09:06AM dtad wrote:

Hi everyone...I had a prophylactic right mastectomy for several reasons. I wanted my breasts to be symmetric. I also was very difficult to screen. Its a very personal decision but I'm happy with mine. Good luck to all.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Apr 16, 2018 10:35AM - edited Apr 16, 2018 05:16PM by stephilosphy00

This Post was deleted by stephilosphy00.
Dx at 29. Original mass 2.5 cm. Biopsy MRI and PET/CT confirmed 1 node involved. Ki-67 score 7.5%. ER100% PR100%. Genetic testing negative. Restaged to stage IIA post surgery. Chose to do 6 cycles of Xeloda to prevent recurrence!! Dx 11/9/2016, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Chemotherapy 11/18/2016 AC + T (Taxol) Surgery 5/10/2017 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 5/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/11/2017 Aromasin (exemestane) Radiation Therapy 7/12/2017 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 4/3/2018 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Zoladex (goserelin)
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Apr 16, 2018 11:04AM Runrcrb wrote:

I chose not to have a prophylactic mastectomy. Testing showed low recurrence likelihood, genetic testing was clean. My breast surgeon recommended double but I couldn’t wrap my head around removing a healthy breast. My plastic surgeon would have supported double but made a comment that resonated. Double wouldn’t change my cancer risk but doubled my risk of surgical complications.

Haven’t second guessed it since making the decision.


Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/22/2016 Lymph node removal: Right, Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
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Apr 16, 2018 11:32AM hannahstripe wrote:

I chose to have a prophylactic mastectomy on the right side - after a few months of thinking this was going to be an easy fix and getting bad news each time. I had mammogram that led to a biopsy - it was thought to be pre-cancer, quick lumpectomy left side and I would be done. No clear margins, found to be early stage cancer, another lumpectomy, still not clear margins. Gene testing to determine - unilateral or bi-lateral mastecomy. After waiting for 2 weeks for results, I had already decided. I was fortunate enough to not have the genes. However, I had already decided to have a bi-lateral mastectomy.

This is such a personal decision - talk to your doctors, talk to your family, but you have to do what feels right for you. No one else can decide this. I have never regretted my decision because it was the right one for me. However, I have many friends who opted to not do any prophylactic steps. Do what is right for you!

Dx 7/11/2012, ILC, Left, 1cm, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 7/11/2012, IDC, <1cm, Stage I, Grade 1, ER+/PR+, HER2- Dx 7/11/2012, DCIS, <1cm, Stage 0, Grade 1 Surgery 7/25/2012 Lumpectomy: Left Surgery 8/22/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 9/26/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 11/10/2012
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Apr 16, 2018 11:41AM claireinaz wrote:

What drove me to make my decision was the fact that ILC tends to be multifocal -- both sides even though we only found it on one side and dense breasts, which hid the cancer in my right breast for several years, even with mammograms.


9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Apr 18, 2018 12:04AM ravzari wrote:

A few reasons I went for it:

1) I've had fibrocystic breasts since they came in, so it'd be next to impossible to find a suspicious lump as they were both kind of two bags full of lumps.

2) Strong family history.

3) NF1 gene mutation, which raises the risk of developing breast cancer by almost 50% by age 50.


The combination of those three things, plus me getting close to the age when other family members were diagnosed = "Get these things off of me immediately!"

I had mine done in 2016 and have been super happy flat ever since.

Prophylactic BMX no recon, June 2016, due to strong family history of BC. NF1 positive.
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Apr 18, 2018 10:36PM ReadyAbout wrote:

I will have double mastectomy in a month - invasive papillary carcinoma on left side, nothing (that I know of!) on the right. For me, it was other health reasons that led me to mastectomy. Radiation wasn't a good option because I have a vascular issue and a heart issue - the RO did research on my vascular issue and didn't feel great about doing radiation and I agreed with her. I also have an ATM VUS gene alteration, which they say isn't an issue, but I'll believe it in 10-20 years when they've had more time to research. Finally, I'm a C cup after breastfeeding two babies (who have grown into ungrateful teens) and the PS said it's hard to match larger size with the implant. I can't say I'm looking forward to it, but with my vascular issue I was dreading radiation and I believe this is the best option for me.

Dx 2/1/2018, IDC: Papillary, Left, 1cm, Stage IA, Grade 2, ER+/PR+ Surgery 2/22/2018 Lumpectomy: Left Surgery Mastectomy; Reconstruction (left); Reconstruction (right)
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Apr 18, 2018 10:47PM star2017 wrote:

Hi everyone. I’m the op of this thread and wanted to post an update.


Today I had surgery. They did the right exchange to implant and left prophylactic mastectomy but had to place a tissue expander on the left rather than the implant unfortunately (bc blood flow was ok but not great, skin needs to heal). Hopefully I can expand and do the left exchange after radiation ends in July.

Dx@37
IDC & DCIS in rt breast, ER/PR+, Her2-
Genetic: BRCA2+
Single mx with TE, 8cm tumor, 4/8 +nodes
Chemo: Dose-dense AC+ T
Rt implant, left prophylactic mx with TE
Next: Radiation

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