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Topic: Single or Double Mastectomy Advice??

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

Posted on: Sep 13, 2018 01:12AM

Megsed wrote:

Hi everyone. Looking for some advice from anyone who has been in a similar situation. I am 35 years old and just finished a round of neoadjuvant chemo for stage 3a. My surgery needs to be within the next 30 days and I'm trying to weigh my options.

My breast surgeon, who is one of the best in the nation, is supportive of either surgery but is also noncommittal. He said to do whatever will give me greater peace of mind. Currently I'm not sure what that is. I was negative for the genetic markers they tested for. A little background: mymom and younger sister (33) do not have breast cancer (at least not yet- they're both young), but 6 out of 9 siblings on my dad's side have or had either prostate or breast cancer, including my dad (2/3 men, 4/6 women). My aunts were all under 45 at diagnosis and one aunt passed away at 42 after being diagnosed at 35 like me. One of the aunts who has been diagnosed is only 45 and has an identical twin who is currently unaffected. So far all of my cousins are fine, but we are all young (mostly 30s and 20s).

I know you all are not genetic counselors. But if you also have a heavy family history of breast cancer, what did you do and do you regret it? I'd love to keep my unaffected breast obviously but am scared I might have a genetic mutation that is yet to be discovered. If I truly have no genetic marker, my BS said my risk of developing a new breast cancer in my unaffected breast with no surgery is 8% at 20 years and will drop thereafter.

TIA for any feedback/guidance.

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Sep 13, 2018 02:02AM - edited Sep 13, 2018 11:33AM by Becca953


I am older than you at 47 but also in a similar boat. Genetic panels were negative, but my mother had it at 44, as did her paternal grandmother (she was in her 60s though.) I have one great aunt on my mother's side also affected, but that is it. My mother's sister is fine thus far at 70. I have no other relatives with it young other than my mother. Now, I was told by the genetic counselor I am at higher risk because I had it on one side. I also have dense breasts which is another risk factor.

MO asked me what we are going to do with the other side last week. I honestly am torn but am leaning toward having it removed as well. However, my mother is still alive without recurrence 27 years later and had only one side removed, took Tamox for many years and did not undergo chemo or radiation.

The drawback is another major surgery with chance of complications. The positives are I will have less to worry about every 6 months with imaging tests and hopefully things will be more even from a visual perspective, because it is difficult to get a real breast and a foob to match up, especially as gravity sets in.

I think it is a very individual decision. Another factor for me, is my children are 11 and 15, so I will not be having any more, and I need to do what I can to be around for them.

MO was also noncommittal and told me to sit on it for 6 months to a year.

It could be a gene that has not yet been identified as I had 87 genes tested in January and now tests cover over 100.

I would weigh the pros and cons, and discuss with family as well. Hopefully, some other well-informed ladies on here will be able to provide additional insight to guide your decisions. I will be following. This disease really stinks. I am hopeful that the billions we spend on research eradicate it sooner rather than later, so that others and my daughters do not have to deal with everything that goes along with it. Right now we have to do the best we can with what we have.

Dx 12/20/2017, IDC, Right, <1cm, Grade 2, 0/3 nodes, ER+/PR-, HER2+ Dx 12/20/2017, DCIS, Right, 4cm, Stage 0, Grade 3, ER+/PR- Surgery 1/30/2018 Mastectomy: Right Targeted Therapy 3/4/2018 Herceptin (trastuzumab) Chemotherapy 3/4/2018 Taxol (paclitaxel)
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Sep 13, 2018 02:56AM Megsed wrote:

Thanks so much for the reply, Becca953. You brought up some really good points. This decision is absolutely agonizing to make. I am very sorry you’re in a similar boat but, like you said, all we can do is make the best, most informed decision with the information we currently have available.

I also have three little kids (5 and under), and wanting to increase my odds of being here for them longterm is why I have been and am leaning mostly towards a bilateral. Dense breasts are also a complicating factor regarding accurate screening going forward and, like you, the genetic counselor said I was at higher risk and should get tested every couple years as new markers are identified.

There’s so much to consider. Wishing you well and wishing you peace of mind with whatever you decide.

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Sep 13, 2018 11:15AM ComeOn2019 wrote:

I am 38 and have no genetic markers either. However I have a paternal great aunt who was dx’d Post menopause and my dad’s sister was also recently dx’d post meno BUT hers is bilateral.

I originally planned to just do lumpectomy (my CA is triple positive, btw), but have decided on bilateral MX for peace of mind. I know nothing will ever give us complete peace of mind, but I figure having no breast tissue is about as close as I’m gonna get. 🤷🏻♀️

Dx 6/2018, IDC, Right, Stage IA, Grade 3, ER+/PR+, HER2+ (IHC) Hormonal Therapy 12/31/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Sep 13, 2018 11:23AM MexicoHeather wrote:

I'm here to put in another good word for keeping one natural breast. Yes, I have to still have mammograms, but the more you learn about recurrence, the more you realize that taking healthy tissue is not protection.

The sensation that you get in the nipple is worth it. There are many sexual changes related to BC due to the medications to block estrogen. Keep this in mind.

Dios es Amor. Dx 10/1/2016, IDC, Right, 3cm, Stage IIB, Grade 3, 3/17 nodes, ER+/PR+, HER2- Surgery 12/5/2016 Lymph node removal: Right; Mastectomy: Right Surgery 12/5/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Right Chemotherapy 1/19/2017 AC + T (Taxol) Radiation Therapy 5/10/2017 Whole-breast: Lymph nodes, Chest wall Surgery 10/10/2017 Prophylactic ovary removal Surgery 12/6/2018 Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 13, 2018 10:32PM - edited Sep 13, 2018 10:47PM by WC3

I have decided to do a bmx. I don't like cutting off healthy tissues but I feel that "bad idea" feeling when I consider keeping it. My paternal grandmother had breast cancer at the same age as me and did not have a recurrance but developed an " entirely different" breast cancer a few years later in her remaining breast. My second cousin on that side also has breast cancer. I do not know if she had it in both breasts but my great aunt on the other side did and possibly my great grandmother, also in her 30s or 40s. I apparently have "very dense" breasts and my cancer was misdiagnosed as benign the first time I had it imaged after finding a lump. So my breasts may just be prone to cancer in general even though I tested negative for mutations on a little over 30 genes tested. Additionally, despite my own vigilance, my cancer was originally missed/misdiagnosed after the first round of imaging.

The breast cancer concordance rate among identical twins is low, interestingly, even when there is thought to be a genetic componant (other than BRCA1/2 mutations) but this isn't surprising because we see a lot of variation between twins in genetic tumor causing conditions, for example neurofibromatosis. In neurofibromatosis type 1, one copy of the bad gene is inherited, and for symptoms to manifest, the person must have the second " good" copy of the gene in some cells acquire a bad mutation. Additionally, epigenetics, the phenomena of genes being on or off, probably plays a part. When twins are born, they have most, but not all of the same genes on and off. The older they get, the greater the difference in their epigenome becomes due to natural variation, lack of a synchronicity, and different environmental factors, most probably minute. The functioning of the genome becomes quite heterogenous and even when a tumor associated genetic factor is present, it can be either directly or indirectly modulated by other genes and environmental factors which, even in conditions like neurofibromatosis, when both twins have the disorder, they do not necessarily have the same tumors in the same exact places.

I don't want to cut off my good breast but I know six things.

1. My body facilitates breast cancer.

2. I have a family history of breast cancer in both breasts, at least one was not a recurrance but a second cancer.

3. I have dense breasts, making breast cancer more likely to develop and more difficult to find/spot.

4. Too many radiologists aren't as good as they should be (I conclude this not just from my own misdiagnosis but other instances of radiologists missing very obvious things with other family members...brain tumors, liver lesions, etc.

5. My cancer was missed due to 3 and 4 despite me finding a palpable lump and being concerned enough to have it checked. It almost killed me, might still kill me, and another miss in the future can kill me. So can surgery but now I have to have that anyway.

6. I controlled for most of the environmental factors that I could to prevent breast cancer. My grandmother and I have vastly different lifestyles and had vastly different pre cancer diets. I excersized regularly, ate no red meat and very little poultry...I was a vegeterian from the age of 10 to 20. I ate a ton of cruciferous vegetables...at least from 20 onward, some turmeric even though I don't like it, a fair amount of anti oxidants. I ate a low glycemic diet and was actually was close to dairy free for a number of years in my early 20s. I got cancer anyway. What else could I have done that I could reasonably have known to do?

Now I have the option of removing the "good" breast and doing so is the only other thing I can do to take an active role in preventing cancer in it. True tamoxifen might reduce my chances of developing cancer in that breast but by how much really? And I may not be able to safely take that without a hysterectomy.

If I had reason to believe my breast cancer was an entirely random fluke, had no compelling family history, and I had fatty breasts rather than dense breasts, I would keep the other breast.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Sep 13, 2018 11:27PM NotVeryBrave wrote:

I'm in the BMX camp as well. Dense breasts, found the lump myself 4 months after normal screening mammo, family history of breast, prostate, pancreatic cancers (genetic testing negative). I didn't want to "watch" stuff in the other breast, I didn't want to have surgery on the good breast to "match" the cancer one, I didn't want to regret keeping one breast.

It's a super hard decision. Sometimes I think it would be easier if there was no decision - you just did what you were told. But when my first BS acted like I was crazy for considering BMX after a pCR, I knew I needed a different BS.

My choice is just that - mine. Not necessarily the right one for someone else. I do miss nipple sensation. I also miss my natural breasts. But not at the risk of my life. That's just my take.

TCHP x 6 with pCR. One year of Herceptin. DTI pre-pec surgery. Quit Tamoxifen after 3 months. Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/18/2016 Perjeta (pertuzumab) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/9/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 14, 2018 12:49AM Sadlynew2018 wrote:

WC3, I can completely relate. They missed mine too. I’m 41 so my insurance doesn’t necessarily pay for mammos. I pay out of pocket for them each year. February mammo came back clear. Last month, I reportedly had a 3cm mass in my right breast.

I decided on a bmx and had one 2 weeks ago. I concur with much of what was said above. It was a decision that just felt “right” to me. I didn’t want to worry about it although the worry never ends. I have no regrets. The first week of recovery is tough. But it gets better with time. Have you seen the 3D nipples? It’s amazing what’s out there now that was not before.

It’s definitely a change. But one that just felt right to me.

Wishing you guidance and clarity in making your decision. This forum is great for questions along the way.
Dx 8/9/2018, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 8/28/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 9/5/2018, IDC, Right, 3cm, Grade 3, 1/15 nodes, ER+/PR+, HER2- (FISH) Surgery 9/10/2018 Lymph node removal: Underarm/Axillary Chemotherapy 10/9/2018 AC + T (Taxol) Radiation Therapy 3/19/2019 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/5/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Zoladex (goserelin)
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Sep 14, 2018 04:02AM Del10 wrote:

I decided many, many years ago I would have a BMX if I was ever diagnosed with breast cancer. Well, here I am and still made the same decision and I am at peace with it. I have dense breasts along with having issues of nipple discharge off and on over the years. Let's just say my breasts haven't been good to me. Will I miss them? I am pretty sure I will.

Also, my Mom is a 20 year survivor of breast cancer along with knowing other women who have been touched with this terrible beast!

When it comes down to it I want to do everything I can to get over this bump in the road and continue on with my life.

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Sep 14, 2018 04:10AM rdeesides wrote:

Hi, Just want to jump in. I had a UMX and I don't know if I will ever be certain it was the right choice or not. I haven't done reconstruction yet and now struggling with how I will make sure that the breasts are symmetrical. With an implant I don't think they can really get it exactly right, and even if they can, if you gain or lose weight, the natural breast will change shape while the implant breast won't. With DIEP recon you don't have that issue, but it is a big surgery and you have to be ok with that. With BMX at least you will be symmetrical no matter what you choose. But with a UMX you still have one natural breast which is nice. Just more things to think about....


Dx 6/24/2017, IDC: Medullary, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2- (IHC) Dx 7/3/2017, IDC, Right, 1cm, Stage IIA, 0/2 nodes Chemotherapy 8/15/2017 AC Chemotherapy 10/12/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 1/16/2018 Mastectomy: Right; Reconstruction (right): Tissue expander placement Radiation Therapy 2/21/2018 Whole-breast: Breast, Chest wall Chemotherapy 5/5/2018 Xeloda (capecitabine) Surgery 12/12/2018 Reconstruction (right): DIEP flap
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Sep 14, 2018 04:43AM Yaniza wrote:

I went with a bilateral mastectomy. My reasoning was that I would probably worry myself into getting something on the so-called unaffected side. As it turned out when the pathology report came back there was a small mass in that side.

I went with reconstruction. And obviously that's easier when you're doing the same thing to both sides.

All the best with these ridiculously hard decisions that we all have to make.

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Sep 14, 2018 06:56PM LisaK12 wrote:

After two lumpectomies for DCIS in my left breast, with unclear margins, my BS recommended a unilateral mastectomy and my second opinion recommended a third lumpectomy. My genetic testing was clear but my maternal grandmother had breast cancer in her old age. Ultimately I opted for a double mastectomy and sentinel node biopsy (with immediate, direct-to-implant reconstruction) -- mainly for reasons of symmetry and my lack of confidence in the imaging of my dense breasts -- and am so glad I did. The key takeaways from the pathology report were (1) sentinel node was clear; (2) DCIS was present on 9 out of 45 slides (one-fifth) of the tissue samples from my left breast (which had never shown up on the pre-surgical MRI, nor multiple mammograms and ultrasounds), and (3) while DCIS was not found in my right breast, lobular carcinoma in situ and atypical ductal hyperplasia -- areas of abnormal cell growth that increase a person's likelihood of developing invasive breast cancer later in life -- were present in my right breast as well as my left. Multiple intraductal papillomas were present in both breasts as well, which are also markers for increased risk of breast cancer. So I feel very good about my decision to have a bilateral mastectomy. While it wasn't an easy decision, it was the right one for me. Knowing that I am cancer-free is priceless and DH is super-relieved as well. I had dense breasts and regular mammogram and ultrasound imaging was never a very successful diagnostic tool for me. Now my BS says I just need an MRI every 3-5 years.

They weighed the tissue they removed -- 530 ccs on each side -- and put in implants that were almost exactly the same size -- 550 CCs. It is nice to be about as symmetrical as I was before and about the same size (just a little perkier) -- because my clothes fit about the same. I did immediate direct-to-implant reconstruction (no tissue expanders!) with smooth round silicone implants placed above the pectoral muscle, using AlloDerm. I was up and walking around the next day and was able to raise my arms above my head immediately after waking up from the anesthesia. The recovery was not bad at all, honestly (the drains were the worst part). I was fortunate not to need pain meds once I was discharged from the hospital -- just Tylenol.

Good luck with whatever you decide!

Dx 12/29/2017, DCIS, Left, Stage 0, Grade 1, ER+/PR+ Surgery 1/9/2018 Lumpectomy: Left Surgery 1/19/2018 Lumpectomy: Left Surgery 4/10/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 14, 2018 10:29PM WC3 wrote:


I have seen the 3D nipples. I intend to have the 4D ones, which are reconstructions.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Sep 14, 2018 10:46PM DebAL wrote:

hi everyone, I went with BMX no regrets. Lump had been there roughly 3 years according to breast surgeon but 2 normal mammograms before the 3rd picked it up. I had very dense breasts and that was the tipping point for me.

I was handed my final surgical report. It was surreal to read the description of my breast by the pathologist. Both breasts were 50% fibro-dense breast tissue. Wow..mammo could only potentially pick up breast cancer on half of each breast. Confirmed my decision for BMX was the best for me. We all make decisions that hopefully provide us with the least worry possible. Tough tough decisions for all.

Dx 1/22/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- (IHC) Surgery 2/11/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 2/12/2018 Mastectomy: Left, Right Chemotherapy 4/2/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 6/13/2018 Arimidex (anastrozole) Surgery 8/8/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/19/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery
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Sep 15, 2018 12:16AM Lula73 wrote:

BMX here too. Many of the same reasons that have already been stated. In addition to those I didn’t like the thought of sensation being different on one side vs the other. I also knew I would stress every time I had to have the other breast mammoed. My question is if there is no significant additional risk contra laterally then why do they do intensive monitoring of it every 6 months and insurance pays for it? Actions speak louder than words my friends. In the end I always say the same thing...choose the option that leaves you with a feeling of peace. I chose to have immediate DIEP flap recon at time of mx in feb 2017 and today you can’t tell I had anything done unless I show you’ve exactly where to look. Breasts are soft and warm and feel like the originals before I had kids. I have sensation almost everywhere except the nipples but they still respond to cold and touch. Thrilled with the results and would do it again in a heartbeat. Here’s where i went-before and after photos are on their site too so you can see their work. They can work in tight timelines like yours too. www.breastcenter.com.

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/14/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/3/2018 Femara (letrozole)
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Sep 23, 2018 08:43AM Akaamy2003 wrote:

I did UMX and regret it. At the time of my dx two years ago, I was shell-shocked. I wanted minimal surgery, minimal drains, fastest possible recovery. So I did UMX without reconstruction, no chemo. My plan was to recover from the UMX, finish the PALLAS trial and then go back and have the other breast off once I was totally healed and in my right mind. But last week, I had a BI-RAD 4 ultrasound of a new suspicious mass in my remaining breast, only 10 weeks after a normal (BI-RAD 1) MRI. This lump did not exist in July, and in September is already 1.6 cm! I had my ovaries removed last year and am on anastrazole so this is no fibroadenoma or ER+ tumor. Am awaiting biopsy results now... I already have an appointment with my surgeon to take this breast off no matter what the results are.

Dx 6/20/2016, IDC, Right, 3cm, Stage IIB, Grade 1, 3/12 nodes, ER+/PR+, HER2- Surgery 7/12/2016 Mastectomy: Right Surgery 7/27/2016 Lymph node removal: Underarm/Axillary Targeted Therapy 2/15/2017 Ibrance (palbociclib) Surgery 4/24/2017 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
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Sep 23, 2018 10:45AM - edited Sep 23, 2018 10:46AM by farmerlucy

I did a preventive bmx at 51 based on tissue changes and mom with age 27 bc onset, her sister had it at 42. The high risk screening was onerous and expensive. My only regret is that I wish I'd done it sooner since a 1.1 cm IDC was found in the final pathology. It was missed or passed on mammo, thermography, mri, and excisional biopsy. I have never for one second regretted my decision. It is what it is.

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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Sep 25, 2018 05:54AM Akaamy2003 wrote:

Just an update -- I posted above when in the crazy town waiting room.... biopsy results on the new lump in my remaining breast show benign "stromal fibrosis". The reason it didn't show up on my MRI on 6/28 is that this type of lesion does not enhance on MRI, apparently. The doctor who swore it was not present on my ultrasound last December was apparently mistaken, according to my breast surgeon. At any rate, I'm relieved to now have the chance to have my remaining breast removed without having to take lymph nodes. It will be outpatient surgery and will take about an hour. Already scheduled for November.

Dx 6/20/2016, IDC, Right, 3cm, Stage IIB, Grade 1, 3/12 nodes, ER+/PR+, HER2- Surgery 7/12/2016 Mastectomy: Right Surgery 7/27/2016 Lymph node removal: Underarm/Axillary Targeted Therapy 2/15/2017 Ibrance (palbociclib) Surgery 4/24/2017 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
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Sep 27, 2018 02:39AM star2017 wrote:

I was brca2+ and went for the bmx (tho not simultaneous).

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/16/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/28/2017 AC + T (Taxol) Surgery 4/17/2018 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Radiation Therapy 5/21/2018 Whole-breast: Breast, Lymph nodes Surgery 10/24/2018 Prophylactic ovary removal; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 27, 2018 09:58AM Elisabeth_W wrote:

I decided on a unilateral. My ILC was caught very early and the plan was BCT/rads. On 7/27 I had a lumpectomy on left with a breast lift/reduction on both. However, after surgery I have LCIS and ALH remaining in the cancer breast, and the tissue examined from the reduction also had LCIS. The tissue removed for the reduction on my right breast didn't have anything (and more tissue was removed from the right side than the left lumpectomy/reduction combined). It's standard care for ILC to leave the remaining atypia as it is a both a non obligate precursor and risk marker. It may turn into cancer, it may not. No way to tell.

My breast surgeon also advised that if I was thinking about mastectomy (we only discussed double at that point) that I do it prior to radiation as implant reconstruction would be the best option and radiation would make implants more of a risk. She was concerned I might not have enough excess tissue to support flap reconstruction of both breasts. If I did the radiation, then had another cancer in 10 years in the radiated breast, required mastectomy anyway, and couldn't reconstruct, I knew I'd be PISSED.

On the other hand, giving up both sexually functioning breasts felt like way too high of a price to pay. I could barely think about doing so. My BS said it was medical overkill for my diagnosis, but that she would support my decision. The only bright spot occurred when my plastic surgeon said the lift/reduction had created the perfect skin pockets for implants and I could have nipple sparing mastectomy with prepectoral implants and not undo all the good work he'd just completed and I'd suffered for.

I'm 49 and my gut said BCT/rads wasn't enough (and might close the door on reconstruction in my case), but double mastectomy was too much. It actually took a couple of days until I realized I could have a unilateral mastectomy/reconstruction on the left and remove the remaining atypia that may or may not turn into cancer, which would eliminate the need for radiation (again, for me and my removed tumor). If I did have an issue with the contralateral breast, I could cross that bridge when I came to it. Which was the plan for BCT/rads anyway-it's a unilateral approach. In either case, I'd be taking the tamoxifen which would help.

Some other people have mentioned it, but once I realized I could pursue a unilateral mastectomy, it felt totally right. It was 11:00 at night when I realized I could just do one and I was so excited I couldn't sleep for 2 hours. I have friends who went straight to double and I respect their choice. I saw two oncologists, a radiation oncologist, and all felt BCT/rads was the right path for me. Until I detailed my additional risk factors (mother with BC twice, dense breasts, mammographically occult disease, and age) and the risk of no reconstruction. Then my situation became very gray and really a personal choice, from their perspective.

It's all a lot to consider and overwhelming. I was very clear that having at least one breast with nipple sensation was important to me as well as being able to reconstruct. Not everyone is concerned about that. Talk to people, know your diagnosis well, and explore what's important to you.

You may wish to review the Mancester guidelines for contralateral mastectomy decision. They were created and published from UK data a few years ago. Within that paper there is a simple formula for calculating the risk of another cancer in the contralateral breast for your lifetime. It's a decision support tool based on current literature, nothing more, to give you an idea of your range of risk of another cancer in the contralateral breast. I've added the link below. Wishing you peace and grace.


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Sep 27, 2018 10:06AM Scree wrote:

Will the Breast Surgeon give you the choice of having a bilateral mastectomy even if a lumpectomy is all that may be needed? I am having a biopsy done on a “very small” spot seen on US that is most likely cancer. I have very high anxiety and would want to have both removed for peace of mind. Also in my opinion if your doing one, do the other also

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Sep 27, 2018 10:13AM Denise-G wrote:

I had a UMX almost 7 years ago for Stage 3 Her 2 Pos breast cancer. I was totally new to BC and didn't know anyone who had gone through it. I could not see cutting off a healthy breast, so I did not. There was no reason to believe any genetic mutations were involved.

FAST FORWARD - My mom was diagnosed 2 years after me with Stage 1 BC, followed by my sister with Stage 3C breast cancer a year later. Obviously, red flags. My sister and I tested positive for Chek 2 1100 mutation. My MO highly recommended I get the remaining breast removed.

I put him off for 1.5 years, but now I am meeting with the surgeon Oct 15th as I have all the preliminary testing done. In retrospect, I wish I would have had it off 7 years ago, but I made the best decision for me at the time.

My sister first had lumpectomy, but then had a double mastectomy with Diep because she had the gene but mostly because she absolutely could not tolerate the stress of mammograms. She had dense breast tissue and it was really rough for her.

GOOD LUCK on your decision!

www.denise4health.wordpress.com my BC Blog with over 200 informative posts about all aspects of BC - stop by! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/22/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/26/2011 AC + T (Taxol) Targeted Therapy 2/27/2012 Herceptin (trastuzumab) Hormonal Therapy 10/10/2012 Arimidex (anastrozole)
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Sep 27, 2018 10:26AM Nikkix2 wrote:


Sorry you are going through this.

I was 34 when first diagnosed, no family history. I had a unilateral mastectomy. Now, here I am 11 years later with a mass in the opposite breast. I will be having another mastectomy.

Dx 12/2007, DCIS/IDC, Left, 4cm, Stage IIB, Grade 3, 0/21 nodes, ER-/PR-, HER2+ Dx 9/6/2018, IDC, Right, 1cm, Grade 2, ER+/PR+, HER2- Surgery Targeted Therapy Herceptin (trastuzumab) Chemotherapy AC + T (Taxol) Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap
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Sep 27, 2018 01:41PM Legomaster225 wrote:

I have very small breasts. My initial tumor was pretty large so even a lumpectomy would have required an implant to look “normal”. I decided to just have a skin/nipple sparing BMX with immediate prepectoral implants for uniformity. After my surgery the pathology report showed a 9mm tumor in my “clean” breast. This tumor did not show up on the mammogram or two MRI’s. Im not trying to scare you but in my case the BMX was the right decision. Just my story.
Diagnosed at 50. Currently 53. Oncotype score 39. One node positive at diagnosis negative after preadjuvent chemo. Bilateral cancer discovered at BMX. Left breast was supposed to be prophylactic. :-( Dx 12/3/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Chemotherapy 1/19/2017 AC + T (Taxol) Surgery 6/21/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 6/22/2017, IDC, Left, <1cm, Stage IB, Grade 1, 0/0 nodes, ER+/PR+, HER2- Dx 6/22/2017, DCIS, Left, <1cm, Stage 0, Grade 1 Radiation Therapy 8/21/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/16/2017 Hormonal Therapy 9/8/2018 Aromasin (exemestane)
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Sep 27, 2018 11:45PM kista wrote:

I’m 37 and having a bilateral mastectomy a week from today. I don’t have a huge long family history; but mine is short and recent. My sister (age 39) was diagnosed with stage 4 exactly 3 months before I was diagnosed (the only reason I know about mine is her Genetic Councilor telling her to have her sisters checked). She tested negative for the gene (mine is still pending).

I chose bilateral mastectomy for a few reasons. 1) Obviously having a sister diagnosed at stage 4 makes me want to do everything I can to avoid a recourrence. I know had she been given that option she’s surely take it over her diagnosis any day. 2) I know it will always be there making me check worrying me & stressing me out. 3) My surgeon said while they may they may the same after recon reconstruction; they won’t age the same. 4) Having ILC puts me at a higher risk for other cancers & ILC likes to hide on imaging.

Best of luck on whatever you choose. It’s just a personal choice. I very hard personal choice

Dx 9/11/2018, ILC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 10/4/2018 Prophylactic mastectomy: Right Surgery 10/4/2018 Lymph node removal: Sentinel; Mastectomy: Left

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