Single or Double Mastectomy Advice??

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.

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. 🤷🏻♀️

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.

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.

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

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!

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.

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.

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.

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.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4527227/

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!

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.