Bilateral vs. unilateral - making the decision

ellenmc

Hello. I realize this is a very personal decision, unique to each individual, but I'm looking for insight from anyone who was able to choose between BMX or unilateral, and your feelings about your decision. I'm scheduled for surgery in early November, and have opted for BMX on paper, but am still deciding. I have gone back and forth about this - it seems like it would be more challenging to live with one breast than no breasts. I am not having reconstruction. DW supports whatever decision I make.

My Drs. tell me my risk of developing a second cancer in the remaining breast is the same as it is for any other woman, but I'm not happy with what they are proposing for surveillance - alternating MRIs with mammograms every 6 months. I have very dense breasts and mammograms failed to catch this cancer.

Cosmetically, I don't feel heartbroken today over the idea of losing my breasts. I could wear prostheses when I felt like it; whereas with one, I'd appear lopsided w/o a prosthesis. I also worry about what living with one breast might do to me mechanically - neck,back, or shoulder pain, etc. I was a 36DD before chemo took my appetite. I do assume there will be more recovery from a BMX than a unilateral.

On the other hand, after talking to my oncologist several weeks ago about risk of recurrence in the other breast, removing both seemed preposterous. And why lose sensation everywhere when you could keep it in one breast? And then I spoke to a woman who did get a second cancer in her other breast! Decisions, decisions... Has anyone else dealt with this decision, and how was your experience? Thanks so much for your insights.

AmyA

Though my tumor was small, I was always leading towards a double. But what 1,000% put me to definite was asking around. I live in Florida - my mom lives here in a retirement community, so older ladies. Every single one I / she asked, who had breast cancer, had it twice. I don't have a strong family history, only my aunt had it. But she had it twice and it metasticized Ito her bones from the second. There was a very fit 48ish woman in my support group who had breast cancer 3.5 years ago, she wasn't told about the possibility of a double and got it again in her other breast 2.5 years later. Doctors have to tell you what they they have to tell you, so I asked nurses their thoughts off the record. They said they see a lot back within 10 years.

I'm biased but here's my two cents.

All the best!

-Amy

muska

Hi ellenmc, I faced the same decision two years ago. I was size 36DDD before surgery, extremely dense breasts. Had scattered macro calcifications for years that were never deemed suspicious for cancer until the pattern of calcifications suddenly changed in 2013. Pre-surgery scanning including MRI did not pick up cancer in lymph nodes and since then I am a bit skeptical about the ability of monitoring to pick up progression before it becomes invasive.

In 2013, i was diagnosed with DCIS/IDC in the right breast. Two tiny tumors in different quadrants so lumpectomy was never an option but I was offered to keep the left breast. I was told the same things about the monitoring and struggled with the decision until the week before surgery - just like you. Two things pushed me towards BMX: I had the same pattern of scattered calcifications in both breasts for years, why would my other breast be less prone to cancer? I also asked doctors and nurses who happened to be about the same age about what they would do if they were in my shoes. BMX was their answer. So I had BMX and surgical pathology found very extensive LCIS in the left breast and in the right too. I am very glad I chose BMX.

Speaking of the BMX surgery itself it is not very intrusive and is usually well tolerated especially if you do not plan to reconstruct.

I see you are in Massachusetts, please feel free to PM me if you have any "local" questions.

lisa137

This coming Wednesday it will be two years since I had my bilateral mastectomy, and I have no regrets about my decision. I also decided against reconstruction and I don't have any regrets about that, either.

Annual screening mammograms failed to see my cancer. A diagnostic mammogram and diagnostic ultrasound also failed to see my cancer; I was told the lump I could plainly feel was just dense breast tissue. Eventually, MRI did see the cancer very clearly, but completely failed to see the eleven positive lymph nodes, including the one I could FEEL, and that turned out to have been completely *replaced* by the cancer.

Once the MRI point was reached, my "good" breast had areas suspicious enough to require biopsies--again, none of which was ever seen by mammo or ultrasound. The results on that breast were negative for cancer, but I decided very quickly that I'd rather go ahead and "make mine a double" than to risk enduring more MRIs and biopsies in the future, or worse, have cancer that went undetected again for years.

I do have prostheses and sometimes I even wear them, but to be honest, I'm perfectly comfortable going flat most places most of the time.

So yeah. No bra unless I'm in the mood for it. No mammograms again ever. No risk of future breast biopsies. Only had to heal up from surgery once. I'm content.

dtad

ellen. I recently had a BMX for a one sided cancer. I could of had only a PMX on the affected side. You are correct that its a very personal choice. I too have very dense breasts. The mammo and ultrasound missed a second malignancy that only a pre op MRI missed. This along with wanting symmetry was the main reasons I chose BMX. It was no picnic, but now 4 months out Im happy with my decision. I have also made the decision not to take anti hormones so the more surgery the better. Good luck....

grammakathy

Two years ago, I was diagnosed with BC on my left side. Just the year before, I had been called back for more mammograms on the right side. However, the next year it was my left side and BC was confirmed. When I asked for the reports for both years, the radiologist had seen the cancer on the left side, and decided it was not a problem.

Even with this confusion, I went ahead and had a single MX & SNB on the left side. Then I waited for the pathology report, meeting with the MO, and the oncotype dx results. After all of that, I made an appointment with the PS and discussed the second Mx on the right side. The advantage of having her do it at the time she was placing TEs is that there was no cancer so biopsies of the lymph nodes on that side did not have to be done. When the pathology report for the tissue on the right side was back, there was no cancer there, just dense confusing stuff. I don't regret having the second side done. I had three months to try a prosthesis on my left side and I hated it. I felt everyone was staring at my chest (and they were!). I was ready to go through the reconstruction process and do both sides at one time - TEs, fills, and exchange. I have not regretted my decisions because I took it one step at a time and made the decision that was right for me.

Best wishes for a decision that you are happy with!

Melkirk13

I know this is a tough decision and completely understand as I just had to make the choice myself. I had cancer in just the left but also decided on a Double MX. My main reasons were that nothing was found by a mammogram, ultrasound or MRI. My cancer was first in the nipple (Pagets) and then high grade DCIS was found during my lumpectomy. I did not have a clean margin so that is what lead me to a BMX. Also, my genetic test came back as a Variant and I didn't have faith in continued screenings for my "healthy" breast. Lastly, my reason for a double is that I really didn't see the recovery as being any different to do both instead of a single. I liked the idea of knowing there wasn't a monkey on my back. Those were my reasons, but you really have to weigh out what right for you.

Su-CQ51

In my case I went with the recommended lumpectomy. There was a turn of events after pathology report came back with positive nodes and unclear margins. I made the decision to have a UMX because there were no signs of cancer in my other breast and no family history etc. I also chose no reconstruction. I was surprised that I didn't feel much difference between the two sides. I still feel that way and it's been almost a year. As for cons.. I'd say that I prefer the puff as opposed to the prosthesis and that could be due to the mastectomy bra isn't comfortable and has wide straps. I also find that shirts and jackets don't stay on shoulder when not wearing prosthesis.

Good luck with your surgery and with your decision ellenmc

windingshores

I had a mastectomy of my right cancer breast first, partly because it got me into surgery sooner. Also, I have an autoimmune illness and I wanted to see how my immune system reacted.

Once all the pathology and genetic tests were done, and I had a low Oncotype score, I could decide on no chemo finally and then I went in for a second mastectomy on my healthy breast. I kept telling MD's that that breast felt funny, and was super sensitive. Turns out it was full of cysts, some quite large- but no cancer.

I don't really know if having two at a time would be easier. I guess one at a time is s bit easier but so much longer. I always had a side to sleep on and didn't need a recliner, and I could open the door or lift with the hand/arm on the side that had not just had surgery. So there were advantages to one at a time. Luckily both times my drains came out early (4 days), there was a pretty long stretch of pain both times, and that meant times two because they were done separately.

My surgeon really liked it that I followed her suggestion to try one and see what the recovery was like. When I still wanted the other one off, she was totally on board. You will find some MD's are increasingly resistant to doing both. If insurance balks, know that federal law guarantees us symmetry.

I love being flat honestly, but my breasts had become uncomfortable. It's so easy- no bra, no camisole, just flat under my shirts.

lisa-e

I think you really should consider how important having nipple sensation is to you and take that into account when making you decision.

I had a bmx and really miss nipple sensation. I decided on a bmx for reasons of symmetry and because I had a inconclusive biopsy on the non-cancer side. I decided that a mastectomy was the ultimate biopsy. I just had no idea how much I would miss having nipples.

rozem

I was a lump candidate but choose a bmx, my reasons were 1. young age at diagnosis 2. aggressive pathology 3. bad breast already had a b9 mass removed, the cancer was #2 and I wasn't waiting for a #3. 4. lump was missed on a mammo

I know if I was older and had a less aggressive cancer I would have only had a lumpectomy. I just feel like at just over 40 when diagnosed I have a long time to develop another cancer (and aren't your chance of having a second BC higher because you have had a first?) - I haven't even entered my high risk years yet

I just wanted to give you my reasons because they are not the ones the doctors give you but something to think about

that said - the breasts are mounds of silicone and yes I miss my boobs some days - but it was a tradeoff I was wiling to make for my sanity. I must admit Im a major worrier and obsessive with my thoughts and I know that i would be constantly wondering if something else was brewing -everyone is so different which is why this is a such a personal decision

whatever you choose you made the right choice FOR YOU

ruthbru

Beesie is one of our resident experts. Here is her list of things to consider.

"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.

• 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!"

edited to add another thought from Beesie: "What I've learned from having my MX is that a MX affects you for your lifetime. I'm more than 7 years out and there are days when the affect of my MX and reconstruction is still very noticeable to me - muscle aches, sore ribs, etc.. There are activities that I no longer do, or try to avoid, because of the reconstruction. How I felt about my MX and reconstruction when I first had my surgery (elated!), how I felt about it two years later (surprisingly disappointed), 5 years later (it is what it is) and now 7 years later (occasionally frustrated) has continued to change and evolve. I think that's important to understand because so much of what you read on this board is from people who have just completed the process, or who are still in the middle of the process. Whether they feel good about it or bad about it at this point in time could easily change as time goes on."

grandmatexas

I'm wondering about the post-op of BMX. We made the decision today, even though no actual cancer was found. My story:

In July of this year, my right nipple started to bleed profusely. A diagnostic mammogram and ultrasound revealed a few scattered calcifications in both breasts. I was told that without the bleeding they probably would just watch the calcifications, however the radiologist scheduled stereotactic needle core biopsies on both breasts. I had the needle core biopsy on the left side only (blood vessels were too close to the calcifications on the right). I then saw the breast oncology surgeon. The biopsy (one spot on the left) revealed ADH. Crazy! They would have ignored it if it weren't for the bleeding right nipple! And the surgeon then wanted an MRI of the right.

After a fight with the insurance company, we did the MRI, which revealed two spots the radiologist believed needed to be biopsied. The MRI-guided biopsy of the right showed no cancer, but it revealed ALH and an atypical papilloma. And we still hadn't biopsied the calcifications on the right. So, back to the breast oncology surgeon, who told me that we needed to do an excisional biopsy to be sure there was no cancer anywhere around these spots, to remove the still bleeding duct, and check the area of calcification on the right.

The excisional biopsies were last Tuesday, and I had my follow-up with my breast oncology surgeon today. He explained that although he did not find any CANCER, which is a good thing, he did not find the papilloma (which is the piece of this whole puzzle that has bothered him from the beginning). With the bleeding since mid-July, he said the most common cause is a papilloma, and if it isn't caused by a papilloma it is caused by cancer. The MRI-guided biopsy found an atypical papilloma and placed a marker. When the doctor did the excisional biopsy, he removed the marker and the area around it, but he could not find the papilloma. He said the hematoma could have moved the papilloma, but it bothers him that he didn't find the source of the bleeding.

He explained that, with ADH and ALH, the suggested treatment is mammograms every 6 months and estrogen-blocking medication. I asked if the fact that I have both ADH and ALH, as well as an atypical papilloma, would increase my risk in an additive manner or if the risk increased exponentially. He told me that was a really good question. He told us he didn't know of any studies that looked at that.

I told him that we had already had lengthy discussions about bilateral mastectomies; seems like with everything going on in both my breasts, waiting for the six-month screenings will be like waiting for the other shoe to drop.

We actually felt much better about our decision when he told us if I were his wife they would be having a serious discussion about mastectomies. He said he had never done this many biopsies on anyone and with the different results and the fact that he didn't find the papilloma, he was really concerned about future screening results. He said he believed my risk was much higher based on everything they found.

He will be setting me up with a plastic surgeon and scheduling me for the mastectomy and reconstruction. If no cancer is found, there will be no need for any medication. I've looked at the side effects of the most commonly used estrogen blocking drugs. Yikes!

I know it won't be a cake walk, but it has to be better than just waiting for what might show up with every next screening.

I'm wondering about the recovery period and what to expect after the surgery with reconstruction. I know my situation might be very different from many others, with no cancer found, but if anyone would care to share what I can look forward to, I would appreciate the information.

Thanks for all your support. I really appreciate it.

Su-CQ51

Hi grandmatexas,

I'm sorry you're going through all this. There's lots of great info here. You might want to check out the Reconstruction forum in the Discussion Boards. In my experience the UMX recovery took much longer than my lumpectomy recovery but I don't have knowledge regarding BMX.

Good luck with your decision

ellenmc

Hello,

I apologize for the long delay in responding to your responses to this thread. Thank you all so much for sharing your experiences and other helpful information. I ultimately decided to go ahead with a BMX. It hasn't been much time since the surgery (a little over 2 weeks), but no regrets so far. I received the pathology report last week and was found to be node-negative and had a pathological complete response to the neoadjuvant chemotherapy, which is great news. My doctor told me there was no cancer in the healthy breast, but the report said that there was atypical lobular hyperplasia in that breast, which sounds like it put me at higher risk of cancer in the future. I'll be having Herceptin until June and will be discussing other hormonal treatment with my oncologist soon.

Thank you again!

Kgatoux

Hi. I have a lump in my nipple area undetected by mammo, sono or MRI. Surgeon suggested maybe scar tissue from past surgeries. But I had breast augmentation 10 years ago and biopsy in that area about 8 years ago. I've had similar lumps there twice before that have either been removed or went away. I'm worried that I have this lump and could these tests miss possible cancer as did yours. What made you get it removed?