Unilateral vs Bilateral Mastectomy

Hi D-

We want to welcome you to the community here at BCO. We're sorry you find yourself here, but hope you find it to be a place of support when you need it most.

You'll likely get lots of different answers to your question; it's a very personal decision, and everyone has their reasons for making the one they did. It sounds like you've thought it through very thoroughly. Hopefully getting some feedback from other members in your shoes will offer you some clarity.

We look forward to seeing you on the boards!

The Mods

My breast are very dense and I went through the mammogram, stereotactic biopsies, ultrasounds and MRI and the BS thought it was a very small pea size lump. I tried a lumpectomy the first time around but couldn't get clean margins due to the ILC they never saw on the tests. During surgery the blue dye turned my right breast blue and that was when my BS knew there was more cancer. After further testing micro calcifications were found in the left breast and both ILC and DCIS was found in the right breast. I could have done a uni, but the BS told me I would be back in 3-5 years to do this again, so I opted for a BMX -- one and done!!! I did 4 rounds of chemo (TC) and 33 rads, because my ILC tumor was large and near the chest wall. I did not have reconstruction. I love being flat. I come home from work take off my prostheses and get comfortable. At first I wouldn't let anybody, including my kids, see me flat, but now I go out running errands and if any of my family comes to my house, they know they are going to see me without the girls.

For me, it wasn't the thought of losing my breasts, it was my hair that was my downfall. It defines you and until I lost my hair nobody knew what I was going through. I have a close co-worker who was battling colon cancer at the same time I was battling BC and nobody knew she had cancer, because she didn't lose her hair. I was the one who got all the questions and hugs and pity stares and cried almost every day until I decided that I was taking control of cancer and not let cancer take control of me. I came out on the other side a changed person, I hope for the best, but I made it through and you will too.

Whatever you decide, it will be right for you. We will be here to support and encourage you. HUGS

I am copying over a post put together by beesie, on of the resident experts on the boards. It gives a good, non-partial list of things to consider as you make your decisions:

"Some time ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. I've posted this many times now and have continued to refine it and add to it, thanks to great input from many others. Some women have gone through the list and decided to have a lumpectomy, others have chosen a single mastectomy and others have opted for a bilateral mastectomy. So the purpose is simply to help women figure out what's right for them - both in the short term but more importantly, over the long term.

Before getting to that list, here is some research that compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX because they believe that it's a more aggressive approach. If that's a big part of someone's rationale for having an MX or BMX, it's important to look at the research to see if it's really true. What the research has consistently shown is that long-term survival is the same regardless of the type of surgery one has. This is largely because it's not the breast cancer in the breast that affects survival, but it's the breast cancer that's left the breast that is the concern. The risk is that some BC might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't affect survival rates. Here are a few studies that compare the different surgical approaches:

Lumpectomy May Have Better Survival Than Mastectomy

Twenty-Year Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy, and Lumpectomy plus Irradiation for the Treatment of Invasive Breast Cancer

Twenty-Year Follow-up of a Randomized Study Comparing Breast-Conserving Surgery with Radical Mastectomy for Early Breast Cancer

Now, on to my list of the considerations:

• Do you want to avoid radiation? If your cancer isn't near the chest wall and if your nodes are clear, then it may be possible to avoid radiation if you have a mastectomy. This is a big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some cancer cells are found near the chest wall, or if the area of invasive cancer is very large and/or if it turns out that you are node positive (particularly several nodes).
• Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It is very important to understand that if it's believed necessary or beneficial for you to have chemo or take hormone therapy, it won't make any difference if you have a lumpectomy or a mastectomy or a bilateral mastectomy. (Note that the exception is women with DCIS or possibly very early Stage I invasive cancer, who may be able to avoid Tamoxifen by having a mastectomy or a BMX.)
• Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery. After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer.
• How will you deal with the side effects from Rads? For most patients the side effects of rads are not as difficult as they expected, but most women do experience some side effects. You should be prepared for some temporary discomfort, fatigue and skin irritation, particularly towards the end of your rads cycle. Most side effects go away a few weeks after treatment ends but if you have other health problems, particularly heart or lung problems, you may be at risk for more serious side effects. This can be an important consideration and should be discussed with your doctor.
• Do you plan to have reconstruction if you have a MX or BMX? If so, be aware that reconstruction, even "immediate" reconstruction, is usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the reconstruction process but other women find the process to be very difficult - there is no way to know until you are going through it.
• If you have a MX or BMX, how will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have complications. These may be short-term and/or fixable or they may be long-term and difficult to fix. Common problems include ripples and indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both (if you have a BMX). If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret the decision to remove your breasts or your healthy breast? Are you prepared for the possibility of revision surgery?
• How you do feel about your body image and how will this be affected by a mastectomy or BMX? A reconstructed breast is not the same as a real breast. Some women love their reconstructed breasts while some women hate them. Most probably fall in-between. Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction. If you do choose to have a MX or BMX, one option that will help you get a more natural appearance is a nipple sparing mastectomy (NSM). Not all breast surgeons are trained to do NSMs so your surgeon might not present this option to you. Ask your surgeon about it if you are interested and if he/she doesn't do nipple sparing mastectomies, it may be worth the effort to find a surgeon who does do NSMs in order to see if this option is available for you (your area of cancer can't be right up near the nipple).
• If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and your nipple(s)? Are your nipples important to you sexually? A MX or BMX will change your body for the rest of your life and you have to be prepared for that. Keep in mind as well that even if you have a nipple sparing mastectomy, except in rare cases (and except with a new untested reconstruction procedure) the most feeling that can be retained in your nipples is about 20% - the nerves that affect 80% of nipple sensation are by necessity cut during the surgery and cannot be reconnected. Any breast/nipple feeling you regain will be surface feeling only (or phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
• If you have a MX or BMX, how will you deal emotionally with the loss of your breast(s)? Some women are glad that their breast(s) is gone because it was the source of the cancer, but others become angry that cancer forced them to lose their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this diagnosis, and the fear, is well behind you.
• If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs? For the first year or two after diagnosis, most women get very stressed when they have to go for their screenings. The good news is that usually this fear fades over time. However some women choose to have a BMX in order to avoid the anxiety of these checks.
• Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or will the loss of your breast(s) be a constant reminder that you had breast cancer?
• Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation. Is this risk level one that you can live with or one that scares you? Will you live in constant fear or will you be comfortable that you've reduced your risk sufficiently and not worry except when you have your 6 month or annual screenings? If you'll always worry, then having a mastectomy might be a better option; many women get peace of mind by having a mastectomy. But keep in mind that over time the fear will fade, and that a MX or BMX does not mean that you no longer need checks - although the risk is low, you can still be diagnosed with BC or a recurrence even after a MX or BMX. Be aware too that while a mastectomy may significantly reduce your local (in the breast area) recurrence risk, it has no impact whatsoever on your risk of distant recurrence (i.e. mets).
• Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that breast cancer very rarely recurs in the contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again with a new primary breast cancer (i.e. a cancer unrelated to the original diagnosis) and this may be compounded if you have other risk factors. Find out your risk level from your oncologist. When you talk to your oncologist, determine if BRCA genetic testing might be appropriate for you based on your family history of cancer and/or your age and/or your ethnicity (those of Ashkenazi Jewish descent are at higher risk). Those who are BRCA positive are very high risk to get BC and for many women, a positive BRCA test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative BRCA test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist. Don't assume that you know what your risk is; you may be surprised to find that it's much higher than you think, or much lower than you think (my risk was much less than I would ever have thought).
• How will you feel if you have a lumpectomy or UMX and at some point in the future (maybe in 2 years or maybe in 30 years) you get BC again, either a recurrence in the same breast or a new BC in either breast?Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best decision at the time with the information that you had?
• How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will you question (either immediately or years in the future) why you made the decision to have the bilateral? Or will you be satisfied that you made the best decision with the information you had?

.I hope that this helps. And remember.... this is your decision. How someone else feels about it and the experience that someone else had might be very different than how you will feel about it and the experience that you will have. So try to figure out what's best for you, or at least, the option that you think you can live with most easily, given all the risks associated with all of the options. Good luck with your decision!"

I'm having the bilateral. Mostly because of my family history of cancer (PGM - in her 40's from ovarian and MGM in her 50's from glioblastoma) and my age (35). Because my children are so young (2, 2, and 1) I feel that I have to go HARD at this and leave as little option for a new cancer to form in the other breast as possible. I told my doctor, I don't care if you shorten my life span and I care nothing about the physical appearance I'm left with, you need to get it ALL OUT the first time, whatever it takes!

I already have implants and I hate them. I had planned to have the removed at some point. I've decided I will probably have new (smaller) implants put in, but sooooo not a fan of this idea. However, it can be done contemporaneously with my mastectomy since the muscle is so stretched already.

For me, my breasts mean nothing, sexually or otherwise (opting for implants in my 20's was a silly decision for me). I say, sayonara! I realize others feel differently, however. It's such a personal choice.

I was happy that I made the decision for BiLa wanted to get it ALL over with. DCIS was only found in left breast during Routine MAMMO July 2013 surgery Aug 2013 went through expanders VERY PAINFUL but "THIS TO SHALL PASS" implants were put it Dec 2013 DEC 2014 nipple removed because cancer was still there and silk mesh to cover ripples wanted 2015 off planes to replace nipple 2016 but now facing https://community.breastcancer.org/forum/44/topic/834263 friend posted this for me I have not chimed in there yet there is no predictor as to who will develop this issue. I have read about Vit E & singular which they put me on singular once not sure if that is something that would be a preventative to help keep this from happening but worth asking your Dr. if you research Capsular Contracture it can happen to anyone at anytime not to scare you at all but just want you to know as much as possible going in to be prepared for all of the what ifs. texture might help keep it away I am in no way an expert just throwing out things that I have ran into and so you can be informed to ASK QUESTIONS do not be afraid to ask.... that is why you are on here but ask Doctor Take a note book & a friend honey our minds are all over the place and hard to grasp everything, Write down questions and write down their answers you will not remember everything they said and will think of other questions once you leave. During this situation I am in now I realize I didn't do all of the research I should have before just want to get it done ASAP but that was a different time. This is not going to kill me with CC now I hear about other ways of doing the BiLa one Dr said they use the fat from stomach to build breast and no implants and no moving muscle and they save all nerves, a team of 5 surgeons work together.... not easy to find this group I would not have been a candiate for that because I am very small but it is an option lmk if interested in Dr I know... PS one in Tampa, Texas, Conn & they all fly in to work with the BS they do it in Tampa Fl and Houston and I was told insurance still pays for all... hotel room too Best of luck God Bless and in my prayers