Genetic testing may help you make up your mind. If you're at high risk, that may push you toward bilateral mastectomy.

There are lots of good reasons to choose one surgical option over another. I chose a lumpectomy because my life is very busy and complicated. I work full time and am a Mom to twins with autism. I wanted the easier surgery and didn't want to have to bother with reconstruction (which can require multiple surgeries). Of course, I'm lucky in that my boob was big enough (C-cup) that a golf-ball sized amount of tissue could be removed without being missed. So, I had my lumpy, my boob has healed, and it looks pretty normal (just a small scar where the tissue was removed). Also, my boobs (and nipples!) still have sensation, a plus.

Yep, the cancer can come back, but a bilateral mastectomy is no guarantee that it won't. I can always have further surgery if necessary. But, once your boobs are gone, they're gone.

Beesie is one of the resident experts on the boards. I am copying a very well thought out post she did on this topic. Hope it helps:

"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 too was given the choice, as my tumor was 1.3cm (nearly twice what the ultrasound had indicated). My BS told me (and a Mayo Clinic decision-tree trial video demonstrated) that though the chance of local recurrence with lumpectomy + rads was 6% and with mastectomy (unilateral or bilateral) was 3%. The actual raw difference was insufficient for me to choose mastectomy. Then I found out that the survival risk was identical, regardless of which option I chose. Now, a golf-ball-sized chunk taken out of the upper outside of an H/I cup breast would have left plenty of residual boobage, seroma or no--but little did I know that rads would make that breast BIGGER than the healthy one (at least for the next year or so)! Turns out, too, that I was node-negative, with clean margins.

I am a surgery wuss--the less time under general anesthesia, and the easier and shorter recovery time, the better (at least for me). I had full range of motion, very little pain (wasn’t even prescribed an opioid), no drains and no fatigue. I doubt whether any of that would have been the case had I opted for mastectomy--even without reconstruction. Now, mind you, I wouldn’t have minded the tummy tuck that would have come with an abdominal fat reconstruction; but I would definitely have been given pause by being under the knife for seven hours and in severe pain not just in my chest but also my abdominal area. (Not to mention the prospect of cutting across my lower abs making it difficult to sing for a long time--I remember how long it took after a c-section to resume singing without pain and with sufficient vocal support). The prospect of tissue expanders, the fills over time, and the second exchange surgery did not appeal to me--but neither did having to deal with mastectomy forms and having to sew pockets into my bras. (I have sunk some serious coin into large-cup, pretty, European underwire bras over the past decade and I wasn’t about to swap them out for mastectomy bras).

Now, there was a period of a couple of weeks post-LX where BMX was a possibility: waiting for my genetic mutation test results. Had I tested positive for either BRCA mutation, I’d have had BMX (as well as oophorectomy), and I’d have had to skip rads because reconstruction post-rads would have been difficult and limited to abdominal flap procedure.

optimist52-I too had a recurrence in the same area, 10 years after the first. Stinks, you go so long and think you're clear, then wham! Anyway I don't know if my choice of surgery back then would have made a difference now or not, makes me wonder though.

This time around I opted for bmx. I gave the girls a chance to stay clean and they flunked, so I fired them! Don't regret my decision one bit, although reconstruction isn't easy. A close friend got diagnosed with dcis in each breast, 6 years apart. Then 1 year after her 2nd dx, cancer found in liver. Never even had invasive cancer identified in her breast at all. So unfair. This all happened right after my dx, and I feared there was still cancer lurking in there that couldn't be seen, and sure enough-dcis in nipple was found in my final path from mx. A nipple that I almost chose to try and keep.

It's a personal choice, just make sure you are ok with whatever you choose, regardless of what anyone says. It's your decision , your body. Took me several weeks to decide, but once I did, I was fine. Be informed.

Sending virtual hugs your way!

This is on the Breaking News section of the BCO homepage, it just came out in December and is from the 2015 San Antonio Breast Cancer Symposium:

Lumpectomy Plus Radiation May Offer Survival Benefits for Early-Stage Disease

Many studies done in the 1970s showed that lumpectomy plus radiation to treat women diagnosed with early-stage breast cancer offered the same survival rates as mastectomy. Based on these studies, the U.S. National Institutes of Health released a statement in 1990 saying that lumpectomy plus radiation was preferred over mastectomy to treat early-stage breast cancer.

Over the last several years, some studies suggested that lumpectomy plus radiation offered better survival than mastectomy for women diagnosed with early-stage breast cancer, but the follow-up time for these studies was only 5 years.

A Dutch study with 10 years of follow-up also suggests that lumpectomy plus radiation may offer survival benefits for some women diagnosed with early-stage disease.

The study, "Higher 10-year overall survival after breast conserving therapy compared to mastectomy in early-stage breast cancer: A population-based study with 37,207 patients," (Abstract S3-05) was presented on Dec. 10, 2015 at the 2015 San Antonio Breast Cancer Symposium.

• 21,734 women (58.4%) had lumpectomy plus radiation
• 15,473 women (41.6%) had mastectomy

In this study, only the women who had lumpectomy had radiation. In some cases, radiation may be given after mastectomy, especially if the tissue removed during mastectomy doesn't have clear margins or if the cancer is more than one spot in the breast.

Overall, the women who had lumpectomy were younger and had more favorable cancer characteristics. Both of these factors would make it more likely that these women would have better survival compared to older women who had less favorable cancer characteristics.

After 10 years, overall survival rates were:

• 76.8% for women who had lumpectomy plus radiation
• 59.7% for women who had mastectomy

Overall survival is how long the women lived, whether or not the cancer came back.

The researchers did a second analysis that accounted for differences in factors that might affect overall survival, such as:

• a woman's age
• whether or not a woman was treated with hormonal or targeted therapy after surgery
• the grade of the cancer

The adjusted analysis also found that women who had lumpectomy plus radiation had higher overall survival rates.

The researchers found that disease-free survival was similar between the two groups. Disease-free survival is how long the women lived without the cancer coming back.

The researchers suspect that the radiation was the reason for the difference in overall survival.

"We think that radiation therapy may have played an important role in the difference in the outcomes from both treatments, although we cannot prove it with our data," said Sabina Siesling, Ph.D., senior researcher at the Netherlands Comprehensive Cancer Organisation.

This study was a population-based study, which means the researchers used information that was collected before the study was planned. It also means that the women weren't randomly assigned to get lumpectomy plus radiation or mastectomy. So the women may have had other health problems that might have affected the type of surgery they had. These other health conditions also may have affected their survival. Population-based studies aren't considered as good as randomized clinical studies.

The study also didn't look at:

• HER2 status of the cancer
• the distance to the nearest radiation treatment center
• whether the women had earlier radiation to the chest wall
• other health conditions the women may have had (diabetes, circulatory problems, or a bleeding disorder, for example)

All of the above factors can affect the lumpectomy vs. mastectomy decision-making process.

"Our study is not an absolute," said Dr. Siesling. "We need to look at each woman's individual situation and tailor the treatment to her. I want to stress that patients need to be given all the information available. The results of this study are part of that information."

"I don't think this study would change the current recommendations at this time," said Carlos L. Arteaga, M.D., director of the Breast Cancer Program at Vanderbilt-Ingram Cancer Center and co-director of the San Antonio Breast Cancer Symposium.

If you've been diagnosed with early-stage breast cancer, you and your doctor will talk about a surgical approach that makes the most sense for you and your unique situation. You will take into account a number of factors, including:

• your preferences
• any other health problems you have
• ALL the characteristics of the cancer
• how close you are to treatment facilities

Whichever surgery you choose -- lumpectomy plus radiation or mastectomy with or without radiation -- know that much research has shown that both are equally effective in removing early-stage breast cancer and reducing the risk of it coming back.

For more information on factors to consider when deciding on a type of surgery for early-stage breast cancer, visit the Breastcancer.org Mastectomy vs. Lumpectomy page.

I, too, think you will have a clearer idea about what to do once you have the results of genetic testing. My original treatment plan was lumpectomy + radiation + AI. I have a strong family history of breast and colon cancers, so I had genetic testing. When the initial tests for BRCA came back okay, we proceeded with the lumpectomy. Unfortunately, later some other results showed that I had two rare gene mutations, PALB2 and Chek2, which raise my risks substantially. So, now that I'm done with chemo, I'll be having a BMX in Feb 2016, followed by an oophorectomy or hysterectomy later this year.

I wish I had known prior to the lumpectomy. I would definitely have chosen mastectomy over watchful waiting every 6 months for the rest of my life. As my MO said, "You're breasts are gonna try to kill you, sooner or later." Yikes!

I just want to add that what I have found very useful is to write down my questions the moment they occur to me, even if in the middle of the night. I keep a master list of all of them, no matter how naive, silly, or trivial. Then I triage my questions: some I can look up on the internet, some I can ask in a forum such as this one, some I need to ask a specialist, some are for my primary care physician. I update my master list as needed, so I am always ready to seize opportunities to get my questions addressed. I get peace of mind just from knowing that I have a system to help me organize my knowledge and my knowledge needs.

Ruthbru, I am just getting started learning about bc and that post of yours packs a lot of key info, thanks.

Optimist, I had double mastectomy and still had a recurrence. Ayr, its a tough decision and your own decision to make. I just want to point out that recurrence after mastectomy does occur. I was originally scheduled for lumpectomy but had a second tiny tumor found on MRI and my other breast was on six month watch. I chose double mastectomy and reconstruction thinking I'm getting this all over. Lucky me I ended up with a recurrence in the skin despite a 16 oncotype, so then I had lumpectomy and rads. Having done both, I think I would lean towards lumpectomy and rads if you qualify. Of course there are medical reasons that many of us have that leans towards mastectomy: family history, more than one tumor, can't do radiation. But if those aren't present, in my mind the difference in odds of local recurrence are not great enough to warrant a mastectomy, and as noted, for years they have shown the same survival rates, and now there seems to be an advantage to the lumpectomy w rads, as Ruth posted. Although I'm generally happy with my reconstruction, and have no lingering problems, it is not a breast and it is definitely a harder route to go as far as recovery. So that's my two cents. Good luck with your decision.