We are 211,215 members in 82 forums discussing 151,373 topics.

Help with Abbreviations

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 12, 2018 11:42AM

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.

Log in to post a reply

Page 1 of 1 (14 results)

Posts 1 - 14 (14 total)

Log in to post a reply

Sep 12, 2018 12:32PM - edited Sep 12, 2018 10:03PM by Becca953

Megsed,

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)
Log in to post a reply

Sep 12, 2018 01:26PM 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.

Log in to post a reply

Sep 12, 2018 09:45PM 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) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
Log in to post a reply

Sep 12, 2018 09:53PM 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 Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Sep 13, 2018 09:02AM - edited Sep 13, 2018 09:17AM 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) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
Log in to post a reply

Sep 13, 2018 09:57AM 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)
Log in to post a reply

Sep 13, 2018 11:19AM 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 8/27/2018 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 9/9/2018 Lymph node removal: Underarm/Axillary
Log in to post a reply

Sep 13, 2018 02:32PM aaj0704 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.

Dx 8/2/2018 ILC Grade 1 and IDC Grade 2, Left, ER+ PR+ HER2-
Log in to post a reply

Sep 13, 2018 02:40PM 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....

Rebekah

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 10/11/2017 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 1/15/2018 Mastectomy: Right; Reconstruction (right): Tissue expander placement Radiation Therapy 2/21/2018 Whole-breast: Breast, Chest wall Chemotherapy 5/4/2018
Log in to post a reply

Sep 13, 2018 03:13PM 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.

Log in to post a reply

Sep 14, 2018 05:26AM 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 1/8/2018 Lumpectomy: Left Surgery 1/18/2018 Lumpectomy: Left Surgery 4/9/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Sep 14, 2018 08:59AM WC3 wrote:

Sadlynews2018:

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) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
Log in to post a reply

Sep 14, 2018 09:16AM 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 2/12/2018 Mastectomy: Left, Right Surgery 2/12/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/2/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 6/14/2018 Arimidex (anastrozole) Surgery 8/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
Log in to post a reply

Sep 14, 2018 10:46AM 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 2/13/2017 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)

Page 1 of 1 (14 results)