Advice on uni or bilateral mast please
I was diagnosed with DCIS on Oct. 11 after a core needle biopsy inmy left breast. There are many calicifications over a large area (about 5cm), so the mastectomy option is the best route. I am BRCA negative (thankfully, as my mom is a breast cancer survivor for 10 years now), but the DCIS is Grade 2 and estrogen and progesterone positive. I feel very lucky that this was caught early, but am still fearful and not sure of what to do for surgery.
I really can't decide what to do about uni- or bilateral mastectomy. My mom had a lumpectomy after invasive bc followed by radiation and tamoxifen. Although we have different cancers and ages, she feels I should have a uni, I think because she likes having feeling in her breasts. My husband feels I should have a bi. I can see how a bilateral gives you such peace of mind and symmetry to your breasts. Can you feel anything after a mastectomy? Can you feel touch, or is that part of your body totally numb? Is a bilateral mast surgery much worse that a unilateral mast? What is the recovery and reconstruction process like? How long?
Any advice is much appreciated, especially things you wish you had known before making your decision or before your surgery. Thank you.
Comments
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I had to make the exact same decision. All the doctors recommended BMX due to my age(41 is young as it's pre-menopausal). Ultimately I decided on a BMX. I wanted symmetry and less worries. Obvioulsy a uni will be easier healing time as it's only one side affected. I was off work 5.5 weeks with my BMX. Recovery wasn't fun but it wasn't awful. Worst part was the drain tubes. I had mine in for two weeks. It was a challenge initially washing my hair, but you can always go get it washed at your hair place a couple days after you get home. I had one nites stay at the hospital. Pillows will be your BFF. I find once I got propped on the couch with pillows and all ny necessities within reach I was OK to rest and heal. I can not feel touch where my old nipples were. Not a numbness more like a "nothingness" I'm all done with my reconstruction except for areola tattooing and I'm pleased with how they look. I have feeling at the outer periphery of the breast area towards my armpits. This is fine by me tho. I personally wanted less worry(altho I still worry anyway!). That was more important than my "feeling" in my breasts. The ONLY thing I wish I had known is that altho my new foobs are perky, round and look great in a T-shirt, I sometimes feel like I wish I could take them off and put them on a shelf to rest them. I'm not uncomfortable and don't think about them all the time. It's just that there are times when I'm keenly aware that something "foreign" is in my body. I still find my most comfy sleeping is when I'm propped up on pillows. Of course I'm only 8 months from surgery and I may feel differently at 1 year. Hope this helps. It's just my experience!!!
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I just faced a similar decision tree -- uni a week ago today.
I wish I had learned more before I decided. I think the decision was the right one for me, but I view that as more luck than strategy.
I went into it thinking "wait and watch", uber resistant to doing ANYTHING, as DCIS is the pre-cancer, non-cancer cancer that is over treated and not pink worthy.
I had the temerity to ask the second breast surgeon why my lesion had not been hormone profiled as that is standard of care and this is a major hospital. Of course it had, but how was I to know? I had the initial report with no hormone profile. She, the breast surgeon, is nationally recognized (I have totally, undeservedly, ended up with the best of the best because of who I happen to know and be related to and for no other reason) said glanced at my pathology report and said with confidence "you are double negative -- this will be invasive in 12-24 months."
Turned out she had a more current pathology report than the one I was making decisions on. In actual fact, I had NO IDEA that pathology reports come in waves. I was told X on September 8, and as far as I knew X was all there was to know, EVER. No one told me otherwise -- how was I to know?
First lesson: make sure you have the most current information.
Second lesson: assume you don't fully understand the meaning of the most current information.
I knew from the initial pathology report that I was Grade 3 (making high grades is programmed into my DNA) with comedonecrosis (I still sort of like the comedo part of that -- it suggests a stealth factor to me when I am about the most direct person you would ever hope to not meet, although I do understand that isn't what the term means at all), I saw the new and improved complete pathology report with ER-, PR-, MIB proliferation index 30% with Grade 3 comedonecrosis for flavor.
Hours and hours of research later I put that together and thought "anyone who would wait and watch that is just daft!", although I confess I could never track down the MIB index against which my proliferation is being compared. It appears that is comparable to the KI67 index, but no telling and good luck getting an actual human being who is treating you to answer that question.
Third lesson: don't expect your doctors to explain what is really going on.
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Hi Lauren,
Sorry you have to be here
, but we are a nice and helpful bunch. 
Regarding your question about one, or two -- that is a decision you will make after getting all the facts, talking it over with your family, and most importantly, discussing options with your surgeon.
When originally diagnosed in 2002, I had a lumpectomy. After the second recurrence, I elected on a bilateral, but did not have reconstruction at that time. The BMX recovery was easier than I had anticipated and I live alone and fended for myself. I took eight weeks off from work and am glad I did. In case you're wondering if I had regret of having a lumpectomy originally, I do not. I made the decision that was right for me at that time.
Three years after BMX, I decided on reconstruction (silicone implants) and all went well.
Each person's story and situation is different.
Wishing you a non-eventful surgery and full recovery!
Hugs,
Jelly
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Personally, if I had this to do over again, I would have skin sparing BLM and have the 3d nipple tattoos.
My titties look great. Better than before, but I did have nipple complications.
My personal opinion is that smooth breasts look better under clothes. I never plan to wear a bra again. If I had it to do over, I would make both the same.
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There have been a lot of discussions on this topic on the boards, so if you search around you'll find a lot of opinions. The BMX seems to be a very popular option, but that doesn't mean a UMX is not a very valid choice. Please keep in mind that a mastectomy is a very significant surgery, with quite a few risks for complications. Taking both sides doubles those risks of complications. In addition, you lose use of both arms for awhile, which I'm sure makes recovery difficult. Finally, there is no guarantee of symmetry - there are many stories posted to these boards about symmetry problems after BMX.
I felt the choice was easy for me. Sensation was very important to me, so losing sensation in both breasts would have been horrible. I did an MRI of the opposite breast and there were no concerns of cancer there, so I felt the choice was clear. I'm also very young (37 at diagnosis).
Not saying a BMX isn't a valid choice, but please don't think it's the most obvious choice.
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I just had to make this decision, as well. It's not easy. I was planning for a Lumpectomy but because of widespread DCIS, that wasn't possible, unfortunately. At first, I was adamant about doing both....symmetry, risk of recurrence, blah, blah, blah. My surgeon really convinced me that the risk of the cancer appearing in the other breast was pretty low. And I had an MRI to verify no activity in the other breast. But, the surgeon also stated cancer can always come back, despite BMX. Nothing in this process is foolproof.
I am 10 days post Uni Mastectomy. The whole breast area is numb. The TE (doing rads) feels like a rock. I HATE the numbness. The pain and recovery is no joke. But, at least i had one arm/side that is useable. Doing both would have been almost total incapacitation for at least 2
weeks. I don't mean to scare you, or anyone else, but these are the issues that are not discussed in advance. I was lucky and had no complications and the healing is going great. Right now, it's not pretty but, I know it will be ok once the final recon is complete.
Whatever you decide, it's important to have all the info and realistic expectations. Good luck!! -
I opted for a BMX. I am happy with my decision. I have larger, perky breasts. They look great. I did not consider a uni because I wanted to be a bit bigger anyway and would have never just gotten augmentation. I also didn't want to have to try to match both sides. That can be challenging for even the most skilled surgeons. I don't have a lot of feeling on the skin but I can tell when there is any pressure type touching because the muscle under the skin/over the implant can feel it. I get nipples and areola grafts in December and I will be done. I can't wait! It's a hard decision. I also did not want to worry about the other breast so that was part of my decision.
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I had a double but often wish I had done a uni.
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I have appointments with two different Plastic Surgeons next week. Once I decide, I will have a uni mx. I considered a blmx, but after reading what Beesie, Deidre and a few others said on these threads, I decided to only remove one breast. It seems from what Deirdre wrote that losing the nipple is psychological difficult adjustment...so if possible, I am asking for the nss. I want to keep the skin and nipple, although the right nipple since surgeries is smaller than the left. But...it's mine.
Recovery time is a major consideration. I fear that the two breast will look different and age differently. Doesn't matter because they already look different after the lumpectomies I've had. Check out this website...it helped me in deciding what kind of mx to ask for..http://www.medicalnewstoday.com/articles/236686.php.
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I had a uni-MX back in May with a reduction lift on the non-cancer side. I won't lie...it is odd to look down and have a very obvious fake breast and a very obvious real breast.I think I will feel better about the MX side once I get nipples it is just odd with no nipples to me. My reduced and lifted side? I'm so thrilled about. Love it!! I was going for a C cup (from over a DD) but am a D now but doctor thinks I should be down to my real size by December. Honestly when I wear my clothes, you can't tell that they are not symmetrical. I mean I guess if you stared at my breast really good and long you could but who stares at other womens breast like that? I can wear tank tops and bathing suits and it is not noticeable. But yes when naked, it is very obvious that one is fake and one is real. So I guess for some that can be a downside.
I only have two complaints about my MX: 1. The numbness. It has receded some. When I first had it done, I was numb from my collar bone to a few inches under where my breast would normally end. I was numb under my armpit around to my back. I was numb to my other breast. I'm still numb where my breast used to be. My BS said I may get skin sensation back, but I will never get breast sensation back. I'm still numb under my arm and on my side. I'm numb where my bra band hits but that is it. So it is getting better. I'm hoping it will continue but don't know. The 2nd thing I hate is the phantom pains. It is pretty rare now but I still get them. The worse is the phantom nipple itching. That is the absolute worse thing in the world. It is like for all the world like my nipple is itching and if I go to scratch, there is no nipple and scratching the top of a numb breast does nothing to help. So absolutely bizarre!! But from what I read, normal. So really those two things are not that bad all in all.
I did my research, talked with my doctors (they did not recommend a BMX), and in the end had to go with what my gut was telling me was right for me. The uni-MX was right for me....that is not saying it is right for you. This is extremely personal and there is no right answer.
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I was diagnosed with DCIS in August and scheduled for a lumpectomy as advised by my surgeon and Oncologist. I did alot of research and read stories about people with the same diagnosis. For some reason I wasnt at peace with the recommendation I was given. The surgeon did not recommend a mastectomy because there was no need for it based on the pathology report and biopsy. After alot of thought and prayer I opted for the double Mastectomy and guess what, the pathology report came back and my second breast had DCIS too. Follow your heart becasue sometimes you can never know what the right decision is. Its been 3 weeks since surgery and I opted for immediate reconstruction. Its the most painful experience though. Sometimes I wish I hadnt done it and remained bear. Sometime I cant sleep, the pillows help for sure but I wish i could sleep on my side. Do not rush your self. Take your time and when you decide what you are having, you willl know. I just had this sense of peace and no one could change my mind. My prayers are with you. Also ask as many questions as you can for all the procedure so you know what to expect.
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Lauren, go to the recontrution thread and read the 101 thread on mastectomy. whippetmom has been a big support and help to me in working through this whole masectomy decision, although I am still reluctant about removing both breast. A mastectomy feels so drastic, and the idea of no feeling on that part of your chest is scary. It is all very scary.
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I don't know if anyone saw the View when the head of Memorial Sloan Kettering was on.
Barbara Walters pressed him about prophylactic mastectomies. My surgeons have all discouraged me and the head of sloan did the same, saying that it was not necessary. they try to save breasts, not get rid of them. But patients have been demanding them. Well, Barbara did not give up. She kept pressing for statistics. He finally admitted that removing both breasts removes chance of recurrence by over 90%. Now why don't they encourage that? A friend of mine suggested that insurance does not cover prophylactic surgery. Seems to me they should, it could save them money in the end.
I have very large breasts and I was worried about just getting one removed, although i would have liked both to be gone. I am 3 months out of surgery now and feeling is returning to my chest area but my under arm is still numb. At first it frightened me, it was like touching a foreign object. But by now I'm used to it and I really don't care a bit. It's a small price to pay to get rid of cancer. The real pain is the worry, is the cancer really gone? I don't know that we can ever be sure of that.
The mastectomy was an almost painless surgery. It was truly amazing. And I had drains for weeks and a seroma, which isn't fun, but again, no big deal compared with the cancer. Now I'm having CMF chemo and again, not nearly as bad as I feared. I can function just as I always have.
Fear and anticipation are hard to handle. Nothing has been as bad as I anticipated.
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Lauren - I've done both - lumpectomies in 2001 followed by chemo, rads + Tamoxifen, then dx'd w/a second primary in June of this year and just had a NSBMX w/immediate reconstruction (saline implants + Alloderm) on 9/19/11. Had I had a BMX in '01, I wouldn't have been re-dx'd w/DCIS (a second primary, not a recurrence) in June, but I don't regret my decison. I had 10 great years w/my own breasts - I loved the sensation, etc., I wasn't really attached to them b/c they were gorgeous or anything. I was also 32 when first dx'd, hadn't been married a year, didn't have kids yet. So the time wasn't right for me for a BMX.
This time, it was. Two breasts in 10 years, all pre-menopausal - bad track record. Technically, the left side was a prophy (side I'd been treated for before) b/c there was NED there. I wanted symmetry and peace of mind.
For some, it's a very painful procedure - I really found the anticipation MUCH worse than the actual surgery and its after-effects. I'm more frustrated than anything - the post-op restrictions are very limiting, and it does take your body a long time to heal. I can sleep OK, still on my back, but am flat now and have been for a couple of weeks (so at about 4 weeks). No pain to speak of, sometimes discomfort, and I still have minimal post-op swelling that gets worse if I exercise too much. I get tired easily, but can drive now and do more things generally.
I can feel things on the edges of my breasts and under my arms, also top and bottom of them have some sensation. Nipples are numb. I have to say, if you are a candidate for NSM, you might want to investigate it as an option - I basically look just like myself, only a little higher and tighter than before (and a little puffy under the arms for now - not a good look!).
You need to get all the facts and then go w/your gut. No one can make the decision for you, and it's a toughie! I wish you all the best, no matter what you decide.
Sarah
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I was told that my risk of developing breast cancer in my non-cancer breast was about 15%, so wouldn't that mean that I have 85% chance of not getting cancer? I mean, 90% is obviously better then 85%, but we are talking a very small percentage here no? I understand why BMX should be an option. I think if that is what makes a woman with breast cancer be able to sleep at night and to feel safe, she should be able to have it, without having to argue with the insurance companies. I also understand why doctors are not recommending all women remove both breast. The percentage is too close.
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I really appreciate all of these posts from all of you incredible women. I have done a lot of research, prayer and thought and I have chosen a BMX. It seemed that all points directed me this way. I really hate removing a healthy breast, but think it's best this way. The major points that made me decide are: being 36 with 2 young children and not wanting to have this happen again when they can remember and be scared that mom will die (I feel so lucky to have had this found so early); my mom is a 10-year survivor, dx at 51; my odds of getting cancer in my healthy breast are 15-20%, just too high a number for me to live with; that my breasts will look more even, symmetrical and good in clothes was a silver lining to it all and self-confidence and feeling good are a huge part of having a good life, right?; I will miss feeling, but that part of my sexuality is not hugely important. So, wish me luck. I go in for surgery Nov. 14. I pray that the pathology finds no invasive cancer in the breast or sentinel nodes. I pray that surgery and reconstruction are the extent of my treatments. I know I have a long road to recovery, but want to stay strong and positive. Thank you for all of your support.
Lauren
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Hi Lauren, Praying for you and for a quick recovery. I had a BMX on May 7th and am in the midst of reconstruction.
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Hi Lauren - glad to hear your decision, and it sounds like it's very well considered . . . I will keep you in my thoughts on the 14th, and hope there are no surprises so you can be "done" after this!
Take care,
Sarah
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I chose to have a BMX because my non cancerous breast was full of calcifications and large cysts. I have immediate Diep reconstruction and the only problem I had is with the drains, they are a tad annoying. I have feeling in both breasts, granted it is not the same as with my original breasts. The pain was minimal, my abdiminal incision did not even bother me that much. I had nipple reconstruction and my boobs loook great. It was a hard decison to make but I am glad I had it done.
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Dear LaurenCollins - My wife just had a BMX and the DCIS turned out to be IDC HER2 positive but a small 3.5 mm tumor. I have some reaction to your situation. First of all my wife had an abnormal right mammogram and a normal left mammogram. After joining the bulletin board and getting more information, it became clear that an MRI of her "good" breast would be a good idea. They did it and the "good" breast turned out to have DCIS. So the decision to have a BMX was easier for my wife. My wife's BMX was on October 14th - she had two weeks of pain but it went away. She still feels "stiff" without complete range of motion and still can't lift anything but got back to driving in two weeks. My wife explored a number of reconstruction options but learned about one that is the standard outside the US - gummy implants. It was an immediate reconstruction in the same operation as the BMX. There are no tissue expanders like in silicon and saline implants. And my wife wanted no part of flap options. The trouble is that it is hard to find a plastic surgeon trained in the gummy implants and they may not be fully covered by insurance. We were lucky and found a surgeon 15 minutes from our home who had done over 1000 reconstructions. I think my wife sounds happy with the reconstruction. However, we have a more serious problem. My wife's cancer is HER2 positive but lymph node negative and ER positive. We have conflicting recommendations from two oncologists - one for chemo and herceptin and one for just hormone therapy. So now we are going to need to get a third opinion. From all my writing and at your current stage, I think you should discuss an MRI with your doctor. It would be tragic if your other breast is "normal" under a mammogram but show cancer with an MRI. In this sense my wife was lucky that they caught it in the other breast as well. Please feel free to send me questions and best of luck.
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I am not an expert but I want to provide a bit of clarification on implant types. One step reconstruction, i.e. No tissue expanders, is possible with any type of implant , not just gummies. There are other factors that figure into whether one can have one step or not and this is best discussed with a ps. Gummies, for those same reasons, are not an automatic one step and one may need TE's even with gummies. Their availability is limited because they are still considered to be in clinical trials in the US,despite wide availability in other parts of the world.
Caryn -
Please be careful if you are thinking that you might get "symetry" from a bilateral! I interviewed 4 ps who told me that they would be able to do a "great" job if I was going bi-lateral rather than uni... When I finally picked a ps - well let's just say he wasn't true to his word... and after I was asleep he did what he wanted to rather than work with the Plan we had laid out... Now I won't say the outcome is "terrible" but considering what I gave up it wasn't even close to "great". I don't say this to scare you only to inform you. If I had it to do over again I would go uni AND I would insist on nipple sparing (if you cancer isn't right behind the nipple). It took all of 4 years to adjust to the new me and I miss the "feeling" of that other breast every day (now 5 years out)... Take care of yourself and always, ALWAYS expect that the doctor you are with is "spinning" his/her truth!!! Deirdre
PS... I would also consider a DIEP rather than select any of the implants!
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BlairK -- thanks for your thoughts. I did have an MRI and additional mammograms on my right "healthy" breast, and all looks fine. But, I am still going to do a BMX, as all signs point me in this direction. I hope that the pathology on my breast tissue does not come back with any new findings, as I would really like to escape having to do any treatments. I want to have another child, so chemo, tamoxifen etc would be devastating for that hope since I do not want to wait to have another baby (I'm 36).
My BMX will be done at Sloan-Kettering by their cheif of plastic and reconstructive surgery, so I know I am with one of the best ps around. He will put in an expander, since I am smaller (B cup), I cannot have an implant put in at the time of mastectomy. I will eventually have silicone or gummy implants at the exchange surgery in 2-3 months.
How log did it take to recover enough to pick up things? I know she is just 3.5 weeks from surgery, so was wondering if/when was the turnaround day when she had less pain and more strength to do things. I have small children and the hardest thing about this will probably be that -- not picking up my 18 month old daughter who wants mommy, mommy all the time.
I am sorry that they found IDC, but am glad to hear that it was a small tumor. I hope you are able to find the right doctor to move forward with her treatments. All of this is so much to navigate, research and make decisions about. She is very lucky to have such a thoughtful and helpful husband.
Best of luck to her (and you),
Lauren
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Hi Deirdre1, thanks for your post and your honesty about things. As much as I dislike removing a healthy breast, I think the peace of mind is worth it. If I went for a UMX, I don't know if i would get this lucky next time to have DCIS, and don't want to risk getting IDC, since my odds are 15-20% recurrence in healthy breast (too high for me!). My DCIS is close to my nipple, so the nipple sparing is not an option. This actually makes it even more difficult to create symmetry with a healthy breast. My silver lining to all of this awful bc is that after my BMX and reconstruction I will have nice perky boobs that will hopefully be bc-free. I just want to feel whole and good about myself again, and think this is the best option. Although I am nervous about losing feeling, it's not at the top of my list of concerns, knowing myself. Also implants are the only route possible since I am thin and the tissue options would be very difficult to do.
I'm sorry that yours do not make you feel good about yourself. What about going back to the ps and seeing if s/he could do something to even things out?
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Double!!!! I did and they found dcis (not detected via MRI or mammo) in 'healthy' one during pathology.
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Also, I have 18 month old and a 5 yr old. It is terribly difficult not being my regular mommy self, but I know in the long run, this is what ensures that I will be here for them in the future. They quickly adapt, I promise!! I am 4 wks out tomorrow, and am allowed to pick them up in 2 more weeks!!!
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Lauren... I DID go back to a different ps (and both were suppose to be tops in their field) and the revisions helped a bit, but still not what I would call "nice perky boobs"... I hope you are completely happy with your results and your decision... I hope it works out better for you than it has for many of us... and that you don't regret losing that fully functioning healthy breast... and if that is what you need to make you feel good - well again I wish you the best!!! Deirdre
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Lauren,
I had a BMX for DCIS last year. They discovered LCIS in my "healthy" breast and although it is not cancer, it did increase my risks for getting cancer in that side. The LCIS did not show up on the mammo or the mri. So, in a way, it validated my decision, but I would be at peace with my choice regardless. The loss of feeling is a downer at times but I try to focus on the positive. Good luck with the surgery. Honestly, it was not as bad as I thought it would be. The expanders were the worst part for me but with each fill, I was a little more comfortable.
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First had lumpectomy, but didn't get clear margins. Then had BMX, and pathology found more Cancer (including Paget's in the nipple) that didnt show up on mammo and MRI. So I'm very thankful I had the mastectomies, and very thankful that my surgeon does NOT recommend nipple-sparing mastectomies.
I had immediate free-TRAM reconstruction, and a few weeks ago I had my final procedure, the tattoos on nipple/ areola area. And now both sides look incredible! I am so amazed at how natural they look. I have shown them to several friends, and they are amazed at the results, also. My breast surgeon said she can always tell which patients use my plastic surgeon, because he is such a great plastic surgeon and gives such good results. I feel very blessed.
I hope your surgery goes well. -
Thank you for posting your question. I am having to make the same decision. I was diagnosed with DCIS on 11/15/11, at the age of 38. My right breast has had a tendency to grow begnign papillomas, but this time, cancer was found in it. Making the decision to have a MX done on that side was pretty straightforward, since it has been pretty active. My left side, although not as active as my right, did have a benign lump removed about 20 years ago, as I was starting college, but hasn't had a noticeable lump since, although it is difficult to feel with my denser tissue. When it was evaluated about 2 years ago when I had my previous surgery on my right, some little cysts were found. I am waiting for test results to see if I have the BRCA gene. If I do, I will definitely have a BMX. If I don't, I am still thinking about removing my left breast, as well. It hasn't been as "active" as my right, but it hasn't been quiet, either. I'd rather not have the worry, but it is a big surgery (I will be having reconstruction done, as well). I'm glad you posted your question and so many have responded. I hope your recovery is going well!
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