Deciding on bilateral vs. unilateral mastectomy

Shoshana, I have dense breast tissue and my mammogram did not pick up my IDC not even when I felt a lump.  The decision was easy for me to do bilateral mx.  I didn't want years of MRI's and the something being missed.  My MO was very supportive of my decision and actually relieved that I was leaning that way.  She said that my tissue is so dense that she would be afraid that detection would be difficult.   

The decision between a uni and bmx is very personal and is one only you can make. Do your research and go with your gut.



I had the choice of a uni but opted for a bmx for a coupe of reasons. My bs recommend an MRI just to check out the other breast and make sure all was ok. It's her protocol and I'm glad she did. The MRI didn't show any cancer but did show a lot of hyperactivity and one small suspicious area that i had an ultrasound for. Neither the radiologist nor the tech could really find it and recommended a mri guided biopsy. My first biopsy wasn't pleasant and I didn't want another one. It was then that I spoke with my bs and decided for a bmx. My bs was completely onboard and after surgery said she thought I made the right decision.



I didn't want to live with it over my head, always wondering if and when something would be found in the 'healthy' breast. I didn't want to face the possibility of doing it all over again years down the road. It's hard enough to deal with once in a lifetime.



I don't have any regrets and know for me it was the right decision. I'm through with reconstruction and I'm very happy with the results. I think they look as normal as a bag of silicone stuck to a chest can. Seriously, you'd never know, unless I was naked and not too many people see that!



Look at all your options and don't rush into anything. Others will get on here that are much more knowledgable about it all. I have to say with your history and family history, if it were me, I'd go with the bmx. But that's my opinion. As I've said, it's a decision that stinks but only you can make it.



Good luck to you and be well.

 Hi, ablydec, and welcome to the forum! So sorry you are going through this tough time, but very glad you found us.

Last year, after twenty years of clear mammograms, I had some bleeding from my left nipple. Seven diagnostic procedures later, we discovered that I had multifocal DCIS (non-invasive cancer) with two areas of  IDC (Invasive Ductal Cancer). Nothing had ever shown up on mammography.

At that point I had several options: lumpectomy with radiation, a unilateral mastectomy (UMX) or bilateral mastectomy (BMX).

I did tons of research, read everything I could, especially posts here on BCO, and prayed a lot.

I made the decision to have a BMX for several reasons:

~ My mom had BC, and I really felt it was just a matter of time til I got it. (She had a radical mastectomy and was a 28 year survivor.)

~ My Radiologist was never comfortable telling me the right breast was clear. She wanted me to have a breast MRI on the right to rule anything out.

~ I had very heavy, dense, fibrocystic breast tissue. I knew I would be worried for the rest of my life that the cancer would appear in the right breast.

~ My Original Girls were huge, lumpy, painful, and droopy.

~ The BS told me that because I had multi-focal cancer (in two places) the amount of tissue she would have to take during a lumpectomy would be so large it would deform the breast, and that I would be better off with a UMX.

~ I got to thinking about symmetry.....a mastectomy and implant on the left, and a lift on the right, and how impossible it would be to match the two up.

I finally made the decision for a BMX and my Radiologist was SO relieved.

I had my surgery on December 5, 2011. All the margins were clear, and there was no lymph node involvement. I did not need either chemo or radiation. In the final pathology report, no cancer was found in the right breast so it turned out to be prophylactic.

Recovery from the BMX was o.k. (I had two drains in for two weeks), but for the first few weeks the expanders did hurt. However, once I started getting fills, that went away. In August, I had my exchange to permanent saline implants. (I took some time off to lose weight.)

I've just been professionally fitted with the most gorgeous bras that make me feel pretty and whole.

I've changed my diet and lifestyle and lost weight, and now feel like I can become the strong, healthy woman I want to be.

There are just as many valid reasons to have a UMX as there are to have a BMX, and I'm sure those members will be along soon to share their experiences.

I've never once regretted the choice I made.

Wishing you the best, and the ability to make a decision that brings you peace.

I decided on a uni.  I've had issues with the other breast (lots of benign biopsies over the years) but when I had a pre-surgery MRI that showed that breast to be clear of problems, I just couldn't justify removing a healthy body part.  I was concerned about the long-term physical effects of having a mastectomy (and reconstruction) and didn't want to risk having problems on both sides.  Plus there is the loss of the natural sensation and sexual feeling. I didn't want to lose that on both sides. That was 7 years ago.  So far, so good. 

But this is very personal decision.  What's right for me - or for anyone else here - might not be right for you.  Here is a list of considerations that I put together a while ago 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.  The choices for you are a bit different, since you know that a lumpectomy is no longer an option, but hopefully you will still find this list to be helpful.

• 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 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?

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I hope this is helpful and isn't simply too overwhelming! 

I chose a UMX, but the doctor gave me about 10 minutes to make the decision, I saw him on a Weds and he wanted to do surgery on Monday.  I had an MRI that didn't show any issues with the "good" breast so chose a UMX, I couldn't justify cutting off a healthy body part at the time.  I have not had, nor do I plan on having reconstruction.  Now it's about 2 1/2 years out from my surgery and I'm planning on having a prophylactic MX for my other breast.  I'm large busted and so am very lop-sided, can't go without a bra, unless I'm home, I have LE issues, neck and shoulder pain, and know that having the other breast off is the best option for me now.  I look forward to the freedom it will allow me.  I'm glad that I didn't choose BMX at the time because I think that I would have doubts about it if I hadn't waited. Also, my husband is now behind the idea, which he wasn't at first.

It is a very personal decision - good luck.

I had a left uni on Oct. 1st, I just wasn't mentally ready to give up my assumed healthy breast. Once it's gone there is no going back. I will deal with whatever happens in the future, whether it be in 6 months, a year, 5 years, or whatever. I didn't want one removed so why would I want both removed. I am okay with my decision so far. I've had a few complications so I am really glad that I have only had to deal with this on the one side. Get lots of information and do what is right for you. Listen to what people have to say, but remember you are the one that has to live with what you decide. Good luck, my thoughts and prayers are with you.

I opted for a DMX in order to have symmetry. Worrying about it coming back really isn't an option for me as I am stage iv and will never be rid of it. However the thought of looking in the mirror at one DD really didnt sit well with me. I didn't want reconstruction as that is a whole process that may have to be reversed due to my current stage and to be honest, I did want to spend that much of the rest of my life in surgery for recon. The though of having the choice of what size profalactic I want or none at all is what drove my personal decision. My DMX was on 11/2 and I am very happy with my decision. Weigh all your options. A very smart social worker told me to take a day and live mentally with each decision I had and see which one fits me the best. That really helped me to see that I wanted choice and symmetry. Good luck in your decision, choose what works best for your personal situation.

Just had Bmx on mon. First had lumpetomy on one side . The bs couldn't get clear margins of dcis on one side so the board said to take it off. I elected to take the other one because I had many callbacks. I had an MRI before surgery and the report was that the left was clear. Well after surgery the report came back that there was dcis in the left so I am glad I chose the Bmx. Sometime I think that mammograms and mri's are letting us all down . If an MRI isn't finding dcis what machine is working for us.

Yes they do. I just had a DMX on 11/2. They actually found a 3cm tumor in the profalactic mx.

Ablydec,

Good luck tomorrow with your surgery.  I had a BMX on 6/1.  They found atypic cells in the right side (prophyllactic side).  Come join the November 2012 surgery group if you like.

Hope surgery is easy and recovery-boring.