Bilateral Mastectomy

I opted for a bilateral. I only had cancer on the right side, but after finding that and getting my MRI, something popped on the left. We weren't sure what it was. I could have had it tested, but at that point I just knew I wanted to have both sides removed. So I chose to not get that side tested and proceed with a bilateral mastectomy.

After surgery, pathology showed it was not cancer, but I don't regret
making that decision. It was 100% correct for me.

That said, what is right for me, may not be right for you. And it's a hard decision to make. And I wish you best of luck making it. You have to do what you think is right for you, and only you. ((hugs)) I have only had the one breast removed. I discussed it a lot with my oncologist and did a lot of reading about recurrence. Plus I had 5 months to think about it during chemo. My oncologist said as long as being checked, going for mammograms and tests was not going to drive me crazy with worry, then I did not have to remove the other breast. What I read at the time is that most recurrence occurs in the same breast or in another organ. I knew that I would have radiation after the surgery so even the plastic surgeon I consulted beforehand said to come see him again 3-6 months after radiation was over. I think I decided to go with the simplest surgery possible hoping that recovery would be easier. I hear women say they choose the bilateral so that they will not have to go thru this again. My research did not find that reasoning to be valid. Breast cancer can recur and metastasize no matter what stage you have and what treatments you undergo.

The NCCN publishes guidelines for followup.
http://www.nccn.com/files/cancer-guidelines/breast/index.html#/86/
Physical exam is indicated every 4-6 months initially. Annual blood work and tumor markers are often drawn. There is a trend away from routine imaging in asymptomatic patients. A woman who has had bilateral mastectomies with negative nodes, assuming she is younger than age 75 and otherwise healthy, will probably have chemotherapy, depending on hormone receptors, etc, so she will be followed by her medical oncologist, as well as her breast surgeon. Initially women are seen every 3 months, and then later maybe every 4-6 months. I had a mastectomy in 2004 and because I am an imaging person I do CT scans on myself every year. But my oncologist does blood work more frequently than once a year, like 3 times, and they check tumor markers every time. Tumor markers are a good way to evaluate if a tumor is active or recurring. Decisions to perform CT, MRI or PET scanning are made on an individual basis, in my experience. There are so many variables. These decisions might also depend on the area that a person lives. Is there a very strong imaging department? Is it a tertiary care center with interns and residents, and is there a lot of research?

There's a saying about New York that applies to the breast-cancer community too: There are 8 million stories in the naked city.

Every woman with breast cancer has a specific set of factors she must consider in making decisions about her treatment. For some women, the choice is clear. For others, the decision-making process is the most stressful part of the breast-cancer experience.

My decision to undergo a bilateral mastectomy after having a lumpectomy and re-excision on my right breast was based on a unique set of circumstances: There was disagreement between my first- and second-opinion doctors about whether the margins around the re-excision were clear. My tumor was an unusually aggressive kind of lobular cancer, and women with lobular cancer are somewhat more likely to get a tumor in the other breast. My tumor hadn't shown up on the mammogram I'd had a couple of months before I was suddenly able to see and feel it, so I was concerned that a new tumor wouldn't be found by mammography either. Both breasts were dense and had areas of micro-calcifications—risk factors for breast cancer—so I was going to require frequent monitoring of various kinds.

All those concerns, plus the fact that I'm a worrier by nature, led me to choose the most aggressive surgery.

I actually didn't have much trouble deciding to have both breasts removed. But a friend suggested that I make a list of pros and cons so that if I ever felt regrets, I could look at the list and remember why I chose that course. I haven't felt regrets, as it turns out, but making the list was reassuring because I realized how certain I was about my decision.

Another woman in my situation might make a completely different decision. She might choose to keep one or both breasts. And I can understand that. After all, even my well-trained, experienced and talented doctors disagreed in their advice. But I feel confident that my decision was right for me. There's a saying about New York that applies to the breast-cancer community too: There are 8 million stories in the naked city.

Every woman with breast cancer has a specific set of factors she must consider in making decisions about her treatment. For some women, the choice is clear. For others, the decision-making process is the most stressful part of the breast-cancer experience.

My decision to undergo a bilateral mastectomy after having a lumpectomy and re-excision on my right breast was based on a unique set of circumstances: There was disagreement between my first- and second-opinion doctors about whether the margins around the re-excision were clear. My tumor was an unusually aggressive kind of lobular cancer, and women with lobular cancer are somewhat more likely to get a tumor in the other breast. My tumor hadn't shown up on the mammogram I'd had a couple of months before I was suddenly able to see and feel it, so I was concerned that a new tumor wouldn't be found by mammography either. Both breasts were dense and had areas of micro-calcifications—risk factors for breast cancer—so I was going to require frequent monitoring of various kinds.

All those concerns, plus the fact that I'm a worrier by nature, led me to choose the most aggressive surgery.

I actually didn't have much trouble deciding to have both breasts removed. But a friend suggested that I make a list of pros and cons so that if I ever felt regrets, I could look at the list and remember why I chose that course. I haven't felt regrets, as it turns out, but making the list was reassuring because I realized how certain I was about my decision.

Another woman in my situation might make a completely different decision. She might choose to keep one or both breasts. And I can understand that. After all, even my well-trained, experienced and talented doctors disagreed in their advice. But I feel confident that my decision was right for me.

I honestly never considered a lumpectomy. I wanted to be as aggressive as possible and leave no breast tissue behind. I was young and had a fairly large tumor and lymph node involvement so I felt like that was the best choice for me. I honestly never considered a lumpectomy. I wanted to be as aggressive as possible and leave no breast tissue behind. I was young and had a fairly large tumor and lymph node involvement so I felt like that was the best choice for me.

I had a bilateral mastectomy 10 years ago but it was prophylactic as I am a BRCA2 carrier (pre-vivor) I chose to have reconstruction with tissue expanders. Time has a way of healing some memories but I can honestly say this was not a bad experience. I spent one night in the hospital (felt well enough to go home same day) and did not take any pain medication. I also did NOT have any drains. The expanders were not that physically noticeable until probably the last visit when I was at full expansion and had to remain that way for a month. I do remember how unnatural that felt but it was over before I knew it. Originally I choose silicone implants but regretted that decision after a few years and did replace them with saline. My implants are so super comfortable and natural feeling, I often forget that I've had the surgery except that i almost never wear a bra. it's much more comfortable without a bra and there is something to be said for perky breasts at my age. I know this is a difficult decision but hearing as many other experiences as possible is certainly a way to gain perspective and help you with your decision. Making this type of decision is extremely difficult. I think that everyone who faces this question approaches it differently. I had a bilateral mastectomy last Dec. I made that choice because I did not want to have 2 lumpectomies (one one each side), radiation and then have to worry every 6 months if I was going to have a recurrence of cancer. The surgery was long (6.5 hours) since I had skin and nipple sparing. I did not have a problem (as some do) waking up without my breasts because I was relieved that the cancer was gone. Recovery was not too bad. I was in the hospital for 2 days and off pain meds a week later. Getting dressed was a bit of a challenge the first few days, but large shirts with buttons or zippers worked really well. I experienced some stiffness, but doing the arm exercises I was taught really helped. My range of motion came back very quickly. Some nights were better than others at the very beginning. Turning over and trying to sleep on my side was a challenge, but I found a way to do it! I was not a candidate for any flap surgery, so I had tissue expanders put in place during the initial surgery. I will not sugar coat anything……… the expanders were uncomfortable, getting them filled was slightly painful and facing the exchange surgery was something I was not looking forward to. I had a lot of faith in my breast and plastic surgeons and asked them many 'stupid' questions. I wanted to understand the pros and cons of the surgeries they were going to perform and the long-range consequences of a lumpectomy vs a mastectomy. I always tell myself to look on the bright side—I do not have to wear a bra if I don’t want to! Today, 10 months after the bilateral mastectomy, I have silicone implants and I wouldn’t have changed a thing! The months of discomfort have been forgotten and I feel I have made the right decision for myself. Good luck with your decision making. Having been there, I know it is not easy.

I was diagnosed with triple negative which is a grade 3. Although no one likes the diagnosis of cancer, grade 1 of course is not as aggressive as some. My personal belief is to try to conserve the breast whenever possible. The statistics for re occurrence are no different whether you have a lumpectomy or a mastectomy. However, there may be circumstances when a mastectomy may be advisable. Some people may think a mastectomy may guarantee them to be cancer free which may not be the case at all. This is a personal decision and you will need to weigh your options very carefully. Take into advisement what you surgeon and other doctors recommend, think about it, research what you can, and then make a decision that is good for you. I, myself did just that-my surgeon advised me to have a mastectomy after a second lump was discovered, I researched, thought about it, got several opinions and decided against it. And I am glad I did since on the third surgery which was exploratory there was no cancer found. Each person is different so just try to decide what you really feel in your heart is the best way for you to go. My heart goes out to you. What a tough, tough day it must be for you. I remember walking around in a shocked limbo state for a few days.

I was diagnosed with a grade 3/stage 1 tumour in October of 2009. Given my age (30) and my BRCA1 gene mutation, my doctors recommended that I start with a lumpectomy and four rounds of chemotherapy, but also suggested a follow up bilateral mastectomy and reconstruction as a precaution against a second breast cancer diagnosis (either in the same or the other breast). All of this being said, my aunt who has the same genetic mutation had breast cancer (stage 2) 18 years ago and opted to have a lumpectomy instead of a mastectomy. She still gets screened regularly, but has been cancer free ever since. It was not an easy decision, but I went through the double mastectomy in May of 2010 and had my final stage of the reconstruction in January of this year. I won't lie and tell you it was easy (physically or emotionally), but I am so relieved to never have to get another mammogram or MRI again. The results don't look as good as I imagined, but I am alive and cancer free. For this, I will always be grateful.

Know that there is no right answer because what might be right for me; might not be right for you. Although so many of us have been through breast cancer, we all have a unique story. Thank you for reaching out to the community and please let me know if you have any follow up questions or just need an ear. Big hugs, Terri

We usually do not perform mammograms on patients who have had bilateral mastectomies with reconstruction. Since mammography requires that we compress the breast tissue there would be nothing to compress, as there is no breast tissue. We do not compress implants, even in patients who have them for cosmetic reasons. We usually do not perform mammograms on patients who have had bilateral mastectomies with reconstruction. Since mammography requires that we compress the breast tissue there would be nothing to compress, as there is no breast tissue. We do not compress implants, even in patients who have them for cosmetic reasons.

Good day for this question. I struggled with this decision for almost two months before making a choice. The most important factor, the SINGLE most important factor (just my non clinical, patient perspective) is understanding the specifics of your diagnosis and the medical options available because of the diagnosis. And then, weighing the odds of each treatment choice. Make an informed decision based upon proven medical facts already accepted by the experts. Don't doctor shop until you hear what you want to hear. Two opinions is sufficient, three AT MOST. Then, apply your own brain or trust someone to use theirs and lay it all out on the table.

Indulge me, I'll tell my story and how I came to my own decision.

In my own case, I was "high risk." My mom had a pre-menopausal dx at 49 years old. For me, that was the obvious first factor because that was something I understood and lived with for 19 years. When I learned I didn't have "garden variety" BC, I began to learn about this thing called "lobular" bc. Who KNEW there were something like 8 different types of BC. I began researching everything I could find about invasive lobular breast cancer. Knew to only go to reliable websites to gather my facts. Didn't like some of the statistics regarding contralateral disease. Even though I understood ILC to be a slower growing cancer, it is also a sneaky cancer and if I remember my stats correctly, there was a 30% chance something may already be going on in the other breast.

Of course, met with genetics at MSK, provided them with a detailed "pedigree" even before the BRCA test was performed. Had an MRI, sentinel node biopsy because statistically the surgeon correctly told me, "Nine times out of ten these things turn out to be nothing." when she was doing the biopsy. No reason to even examine lymph nodes during the lumpectomy (biopsy).

I began to try to understand how to properly calculate a risk factor (something I would NEVER be able to do with chemobrain... those are complicated calculations). My own cancer elevated the risk, mom's cancer, that 30% chance in the other breast. When I met with the surgeon for my post op check up after the node biopsy, I told her I wanted a bilateral. This is where "there are doctors and then, there are DOCTORS" (and fyi, Dr. A, you are in the latter by a mile). She put down all of the paperwork and sat down beside me to ask me WHY. I was able to clearly explain all of my reasons (and I was forewarned by the PA, "she will not let you make a decision like that without going home to think about it"). My BRCA results were still not in. She asked if I would like to wait for the test results and I explained those results mattered very little. The surgery was scheduled that day.

As a general aside but of significant importance, I knew I would have to have radiation. It wasn't the radiation that bothered me, it was the fact that IF there was a problem that ultimately did require mastectomy down the road, I understood the reconstruction process would not be quite as easy working with radiated skin.

About a week later, I did get my BRCA results. I have mutations of unknown significance on both BRCA1 AND BRCA2. I sat with the head of genetics at MSK to review the results. One of the mutations was seen for the first time (in me). Basically, that was an inconclusive test in the decision making process so I am glad my decision was already made regarding the mastectomy. The BRCA tests played a role months later when I was deciding about the ovaries.

When something is an area where research as shown no benefit in choosing one treatment over the other, at least where I was treated, the doctors are very big on patient choice playing the biggest (the only) role. This, at some point started to get annoying and I joked about it with my oncologist when discussing my ovaries. I was 49 and I knew the ovaries were a potential problem waiting to happen. But still. I wanted to be TOLD what to do. I wanted a doctor to make the choice. I was sick of self advocating at this point. He had access to the BRCA results and his guard was down as he glanced at the paper and he blurted, "and those ovaries are going after chemo" .... and then, in his very professional You Make The Choice voice, "You should think about having your ovaries removed when we are done with the chemotherapy." I laughed, told him "too late" and "thank you telling me what to do" ....

That was a very long story...... but it's all about information...it's about understanding what is unique about your disease (no two are alike)....... and it's about having the ability to weigh options by saying, "If I do this, I have a 50% chance of something happening in the future" vs "If I don't do this, I have a 90% chance something may happen in the future" When the percentages are not that clear cut, it gets a bit sticky and difficult. Making sure the stats are being presented accurately (and this is where it helps to have a math head or someone who can break it down for you in an unbiased, simple, this is it fashion)..... VERY important.

Ultimately, my fear at 49 was that I did not want a new breast cancer 20 years down the road which seemed to be a big issue in my own case. So, I chose the most drastic route. I am lucky (no, not rah rah breast cancer lucky) that I DID have my choices validated quickly. The "good breast" was filled with as yet unseen things which would have at the very least had me in for a biopsy, Mom was dx'd with a 2nd primary in her other breast less than a year after my surgery, my youngest sister had a DCIS dx with one matching BRCA mutation, my other sister missed her mammo time by about two months. The doc wanted the "suspicious area" removed. The cell changes were there. Likely if she went on time, the area would not have shown up and a year later, it would have been cancer. I am now part of what is known as "familial disease."

And ok...I will shut up now. Feel free to edit at will!!!

AnneMarie
I had 5 great reasons for going ahead with a bilateral mastectomy and ovary removal. My husband and our four beautiful chilren. When I was diagnosed at age 39, even before my positive test for a mutation in my BRAC1 gene, my twin sister, who experienced Stage 2 breast cancer at age 33, was undergoing either a mammogram or a MRI every 6 months. Every 6 months, she had to go to the doctor and wait for an 'all clear' call. I decided that a bilateral mastectomy FOR ME was the best way remove the cancer and reduce my risks for it coming back again. My tumor was also estrogen receptor positive. My doctors informed me of the increased risk of ovarian cancer and since I was already blessed with four children, it was not a hard decision to remove my ovaries. I do miss the estrogen, though. I'm taking Femara now as part of my adjuvant therapy and being in menopause at the tender age of 42 pretty much stinks. Hot flashes and night sweats are as bad as my mother-in-law described. NO, they are worse. Actually, my twin opted for a prophylactic bilateral mastectomy with reconstruction and ovary removal too. She has a mutation in both her BRAC1 AND BRAC2 gene. Because of the current research related to increased risk when you have a mutation in your BRAC1 or BRAC2 gene, she decided to make the difficult decision to have these surgeries. These are difficult decisions but fortunately, there are great medical and surgical minds (and genetic counselors!) that can help you talk through your options.

Whether a patient has a bilateral mastectomy or a unilateral mastectomy, the indications for radiation are pretty much the same. It depends on the lymph node status, the size of the tumor, the margin status, and whether or not there is skin involvement. The menopausal status of the woman may also factor in. Whether a patient has a bilateral mastectomy or a unilateral mastectomy, the indications for radiation are pretty much the same. It depends on the lymph node status, the size of the tumor, the margin status, and whether or not there is skin involvement. The menopausal status of the woman may also factor in.

I agree that, for me personally, this was as much a psychological issue as anything. Yes, I believe I got a better cosmetic result which was a bonus, but having had lobular, it was my understanding that there was a higher rate of occurrence on the prophylactic side (Docs, is this still what the studies are saying? I haven't kept up on that one!) Like Elyn I was young (35) with a 3 1/2 year old so my decision. On the other hand, I tested BRCA negative. The good news for me is that while we know there are no guarantees, my pathology in the "healthy" breast was not good, so no regrets. However, what I was unable to take into account is what it would mean down the road to have lost both nipples and almost all sensation in both breasts, and that loss is often part and parcel with intimacy. YES, I am glad to be alive, and yes it was a price worth paying. But I might have processed it differently at the time, and involved my husband in more of the decision, had I thought that part through... If the woman is young (i.e. pre-menopause) and has any family history of breast, ovarian or prostate cancer (on the maternal or paternal side of the family), she should consider genetic counseling and testing. Genetic testing can determine if she carries an inherited genetic mutation that caused her cancer. In that case, a bilateral mastecomy is recommended because her chances of getting cancer in the unaffected breast are very high.