Should I get a single or double mastectomy?

Hi Mysunnyday. I was diagnosed at 44 and had a single (right) mastectomy with reconstruction then chemo. I also had a lift done on the left breast at the same time as mastectomy. I just couldn't bring myself to remove the healthy breast. There is always a chance the cancer will return- just a fear we unfortunately have to live with the rest of our lives. It can come back even if you've had a double mastectomy- there are no guarantees. The choice of a single or double mastectomy is a very personal decision. If you rely on statistics, talk to your doctor about the chances of recurrence after a single or double. I personally don't think about statistics too much as I feel cancer is a crapshoot. If it helps any, I am over 4 years out now and the fear has lessened tremendously. Yes, I think about cancer everyday, but it no longer consumes me. Feel free to ask any questions!

I, myself, would leave the 'good' one alone. If you don't have a genetic component, then it really (to me) doesn't make sense to cut off a perfectly healthy body part. Any surgeries can have unforeseen complications, which then would be something else to deal with on top of everything else. I would do the needed mastectomy, have the reconstruction & then if you aren't happy, that would be the time to think about whether you want any further surgeries or not. 

Dear mysunnyday, Welcome to our community. We are sorry that your diagnosis and questions about surgery options has brought you here but we are glad that you reached out. Treatment decisions are so very personal but this is a community where many have faced similar options and can share their own thoughts. Only you can make the decision that is right for you along with input from your doctor. You many want to check our our education site for more information on single versus double mastectomy. You also may want to check out the triple negative breast cancer forum for the experiences of others with a similar cancer type. Best wishes to you in your decision. Please keep us posted. The Mods

mysunnyday, 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 am a uni girl-had a masectomy on one side and lumpectomy on other side with a lift. Like you said-I wanted to maintain feeling in one breast....and I do have it in my lumpectomy breast. That was important to me. My breast surgeeon told me the statistics would be the same whether I had a masectomy or a lumpectomy. It is a personal decision for each-but I too feel like it is best to save whatever parts you can. Masectomies are rough-physically and emotionally. One versus two was much easier.

I had a Bmx and would do it again in a minute. As someone else said I didn't want to feel imbalanced in any way. Also , when the pathology came back from the "good" breast it turned out to have a lot of benign activity that could have set me up to do the whole thing again anyway in the future if I had left that breast. To answer your question, yes there is some numbness to the skin in the center around where the nipple was but the whole outer part of the breast and my whole chest wall is fine! The area that is numb Is not noticeable to me anymore on a daily basis. It comes down to what aspects are important to you in the long run. Hope this helps!

Hi mysunnyday,

It is a tough decision eh? Actually for me it wasn't too hard , my gut told me to leave the 'healthy one' until someone tells me different. Because of my type of cancer the chance of a new cancer is in the single digits...if something pops up with that one I will take care of it then. I am 50 , so that added to my decision too . I had my masectomy on oct 8th with a expander. It is uncomfortable and hard to imagine that one day there will be some kind of symmetry . The PS plans to lift my other breast and put a small implant so they age relatively the same . It's amazing what they can do these days. The hardest part right now is trying to wear things that don't show how lopsided I am. My masectomy side is numb which is interesting getting use to and strange zapping and stinging sensations as the nerves do their thing. I am looking forward for my next surgery next month for final implants. Whatever decision you make will be the right one😊 hang in there and trust your journey