MX or BMX??? Really don't know what to do...

kidznpets

Hi all,

Was recently diagnosed with DCIS on L side.  Expected a lumpectomy & radiation, but due to extent of the DCIS, surgeon recommended a mastectomy, with SNB.  Thought I would have the TRAM for reconstruction, but after visiting the plastic surgeon, decided on implants.  Didn't expect the plastic surgeon to ask me if I wanted a uni- or bi-laterial MX-why would I want to remove a healthy breast?-so i asked him what most women do. He said it's becoming more common to have both done. Thought it might look more "even" so I decided on the BMX.  Now, I'm wondering why in the world I am having a healthy breast removed? I also asked about going a size smaller (I'm about a DD) but the PS didn't recommend that. Now, I don't know what to do-I don't want these huge boobs that will look ridiculous when/if I lose weight, and if I go with the unilateral, will I be completely uneven?  So confused, and I don't really have anyone to talk to about this, so here I am.  I welcome your comments & opinions-thank you!

carolpr56

Kids, whatsnyour prognosis? I had unilateral mx in 09, with a reduction on the healthy side, as it was not considered to be at risk. I kept it for the sexual benefits, lol! I've not regretted it (altho things have turned out differently now, it's still a healthy breast as far as I know).



YOU are in charge of deciding what you want the PS to do. Get all the facts before making an irrevocable decision. One of the big reasons MY ps advised a bmx was so they would "match". Lol! I used a puff to even things up when I gained weight, and I've sure enjoyed the nipple sensation (sorry if that's TMI, but hey, it's a major factor here) while I could.



Now i've had a recurrence, and its not dcis but TN idc, the chance of getting it in the other breast is too high for my comfort zone so off it will come. See? Don't get pressured (even by yourself) to rush. PLlus, if you opt for recon, there WILL be more surgeries (revisions) in your future, so it's not like you'd be avoiding all future surgerynbynhaving a bmx now.



Bottom line, what's the onc say about the other breast? You can always have it off later ; )

Beesie

kidsznpets,

I can see why you don't know what to do.  My first recommendation?  FIND A NEW PLASTIC SURGEON.

For this PS to suggest that you remove a healthy breast because "it's becoming more common to have both done" is ridiculous.  If you read this thread:  News: DCIS shouldn't be called cancer?   you'll see that the fact that it's becoming more common is a big concern that's leading some in the medical community to suggest a name change for DCIS in order to reduce anxiety and the over-treatment that's driven by this anxiety (a non-medically necessary BMX would be considered by some doctors to be over-treatment).

I also think, as Carol suggested, that if a PS suggests that someone remove a healthy breast in order to have symmetry, here again it's time to see another PS.  A good PS can deal with symmetry issues for those choosing to have a single mastectomy, and yes, going smaller is certainly one of the ways that this can be done (quite often, in fact).  By the way, in working with a PS, you get to decide on the size of your reconstructed breast or breast - not the PS.  The other thing to keep in mind is that having a BMX does not guarantee symmetry.  Each side can turn out differently.

All that said, this is your decision.  There is no medical reason to have a BMX, but if you wanted to have one for other reasons - for example if your risk to be diagnosed again is high, or if you have a strong family history of BC, or if you already have a high risk condition in your other breast, etc. - that would be something else altogether.  You need to make this decision based on what's right for you, not based on what other women do or what your PS suggests. 

Sometime ago I created a list of considerations for those making the lumpectomy vs mastectomy vs. bilateral mastectomy decision.  Take a look at my June 13th post in the following thread:  Topic: lumpectomy vs mastectomy - why did you choose your route?   It's not all relevant to you, because you know that you need to have the MX, but I think going through this list might still be helpful to you.

And I really think you need to find a new PS!

kidznpets

Thank you Carol & Bessie-your info & comments are invaluable.  I guess I didn't know what I didn't know, if that makes any sense, which is why I didn't ask more questions.  I'm leaning toward the unilateral MX. I have about a month before my surgery, so I have some time to officially change my mind.  Bessie, I did read your June post, and found it very helpful and informative. 

I'm so glad I found this message board; it is encouraging to hear from others who've been where I am & are willing to share their experiences. 

LAstar

I agree that you should interview other PS, especially if you want reconstruction other than implants.  I'm willing to bet that, if your PS did TRAM flap surgery, he would have been more encouraging about it.  They will only suggest what they can sell you!  I find his poorly-substantiated suggestion for a BMX off-putting.  If it never occurred to you to have BMX beforehand, then UMX is probably for you.  Find someone that listens to you and what you want.  If you can find some women in your town that can make recommendations, even better.  Best wishes!

comingtoterms

There was an interesting interview on NPR about this very topic. You can usually plug into them online.

Tracy516

I'm having a bmx with DIEP flap immediate. The reason for me was not just to be the same (though that is part). I also don't want to worry for years and years about new cancer in the other breast! Plus they can only do DIEP once. And I didn't wasn't implants.

I think you need to read all you can, get a second opinion ( my dr did not tell me to do this though the clear breast will be biopsied ) and make your own choice! Good luck!

Mgster

I had a diagnosis of DCIS in my left breast and had a unilateral  MX in June.  I am going through reconstruction with a Tissue Expander.  Today was actually my last fill and in two months I will have the TE out and the implant put in.  If I tell you that not a day goes by when I don't ask myself why in the world didn't I do both!  The reconstruction would be much easier...no worry about the matching size, etc.  But most of all, I worry that something will show up in my healthy breast and this whole process will start again. 

Beesie

Mgster, 2 months after your diagnosis, of course you worry about whether something will show up in your healthy breast.  That's normal.   After a diagnosis of breast cancer, it takes a long time - a year, even 2 years - before those fears fade.  I had just a tiny microinvasion of IDC but it took me 9 months before I stopped thinking "mets" with every headache or any other ache or pain.  Everyone experiences that, whether they have a lumpectomy, a UMX or a BMX.  And then one day you realize that you aren't thinking that way anymore.  

So don't judge yourself for making the decision to have the UMX.  Give it time.  You might decide after a while that you do want to remove your other breast.  Or you might find after a while that you are really glad that you made the decision that you did.  You need to live with it for a while - and I mean a year or two - before you can really know how you feel.

I'm 7 1/2 years out from a UMX. Over the 7 1/2 years, with muscle aches and contractions from the implant, and with phantom itching, I have spent much more time thinking about, worrying about and frustrated with my reconstructed breast than I have spent thinking about my natural breast.  I think about my natural breast once a month when I do my BSE and twice a year when I get my screenings.  I think about my reconstructed breast a lot more often than that, as it itches or aches.  That's just my experience; everyone's experience is different and unique.  But I wanted to offer a different perspective.

As for the ease of reconstruction, my PS actually felt that it was easier to do a single breast because she knew exactly the size and shape she was going for with the reconstruction. When you have both sides done at the same time, each side may react differently - our bodies are not symmetrical so the way an implant sits and looks on one side might be different from the other.  It's not unusual for those who have BMXs to have revision surgery to even things out.  And the saying that I've heard on this board from those who've had BMX is that their reconstructed breasts are "sisters, but not twins".  A good PS can achieve a similar result with a single MX.

Mgster

Beesie...thanks so much for your comments.   You have definitely made me feel better.  I do think this is all just too fresh/new to me and I have to remind myself to give it time.  I have an amazing PS and he has no problem matching my good breast. 

I want to add my thanks along with everyone else for all the information you have presented on this website, Beesie.  I have so many of them "bookmarked".  LOL   This place has been absolutely the best source!

CaseyM004

welcome to my world ! I have been going back and forth on whether to remove the healthy breast. Last night was no, this afternoon was yes. My husband says it is my decision and he will love me regardless. My Breast surgeon said to keep the healthy breast. Plastic surgeon recommended to do both for the symmetry. I am about a 34 C. I told him I did not want to go bigger and could he match the RMX side with the left and then he goes on about an implant in the left. I'm. Not too crazy about that. I figure If there is going to be the surgery on the healthy breast, remove the breast tissue and whatever risk of cancer/DCIS ETC. (however how small) and then reconstruct. He also can do nipple sparing on the L but not the R the surgeon said the DCIS is too close.



So I empathize with your process.

CaseyM004

To Beesie🐝

Question? Are your breasts now the same size and symmetrical? How did the PS do? Have you had any DCIS in the other breast since?



I appreciate any response you are willing to give 😊

kidznpets

Hi all,

Thank you all for sharing your experiences & information-it has been invaluable! Although I too changed my mind several times, I decided to go with the BMX, with implants, and am having my surgery this week.  There were a # of factors that influenced my decision, and I realize I have to make peace with whatever I decided.

Again, I'm so grateful to all of you for willingly sharing what you went through-I wish you all the best. 

kidznpets

vfay49

Kidnpets, I am in an almost identical situation as you have mentioned in your first post above, but my extensive DCIS is in the right breast.  I have already had a lumpectomy; and because of poor margins, size of DCIS (6+ cm), and Grade 2-3, my bc surgeon has recommended a mastectomy. I have not yet decided between a unilateral or bilateral mastectomy.    However, because of a family history of breast and ovarian cancer, my surgeon has put me on the fast track to have genetic testing next week to help with my unilateral/bilateral decision.   If I test negative, I am relatively sure I will go unilateral.

I am also trying to decide between impant(s) and the DIEP Flap procedure.  I feel I will be a candidate for the DIEP Flap, I and am leaning in that
direction; but I will not know for sure until I see my PS, also next week.  At 64 years of age, I do worry about a diagnosis in my good breast in the future; and I know the DIEP procedure can only be performed using abdominal tissue one time which does concern me.

I am currently a 38 DDD and would like to drop down to a C or D cup. I am also about 30 lbs overweight but hope to loose that extra weight after surgery.  I have not yet found out how weight loss will affect the final outcome of my reconstruction.  Also, I do not want additional surgery on my good breast if I go with a unilateral mastectomy.  A friend of mine who had the DIEP Flap had a reduction on her good breast following a unilateral mastectomy, and the surgery sounded like something I would not want to deal with.   With implants, I am concerned about the TE's, comfort level of permanent implant(s), and replacement ten years down the road when I am 75 years old (average replacement time).  So much to think about!   I have a good resource as far as the DIEP procedure is concerned but input in the area of implants would be greatly appreciated.  

melisden

I am scheduled for my bilateral mastectomy next week and still I'm wondering if I'm doing the right thing or if I should just do a unilateral.  I've talked to a couple of people who have had friends who did the unilateral only to have to do the other side a couple of years later.  It's a really hard decision for me.  My doctor says there is a 5-10% chance I would develop a breast cancer on the opposite side if I do single......so there is about a 90% chance I will never develop anything else?  I wonder about these statistics because so many women are doing bilaterals - so how do doctors really know accurate statistics?  Is there anyone out there who has done a single mastectomy who hasn't developed any other cancer and is happy with the cosmetic results?

LAstar

Beesie and Ariom are two that had UMX and are happy that they did.  I had a BMX because there were some suspicious spots in the MRI on my non-cancerous side and I did not want to go through the monitor-every-6-months process.  They turned out to be false positives.  For me, I would have needed a reduction on the good side to get symmetry, and I wasn't interested in any surgery that wouldn't reduce my risk of dealing with this again.  Are you having reconstruction?  Recon is quite a journey, and there are always potential complications regardless of the method.  I had complications on my cancer side that will require further surgery.  If I'd had complications on the other side, I might have a different attitude about the BMX.  It IS a tough decision, but some women just know they want UMX and some just know they want BMX.  Listen to that little voice inside and read the stats.  The right decision will come.  

redsox

melisden--

Although the rate of bilateral mastectomy has been increasing sharply in recent years, it is still less common than unilateral mastectomy or breast conserving therapy for DCIS. On these boards those having bilateral mastectomy seem to be more heavily represented but this is not a representative sample of the whole population. 

For example, this article in Journal of Clinical Oncology:

http://jco.ascopubs.org/content/27/9/1362.full.pdf...

found that the rate of contralateral prophylactic mastectomy was 4.1% for all surgically treated patients and 13.5% for patients undergoing mastectomy in 2005. This was the first article I found with statistics for these rates but more recent years would show further increase. Still, the numbers of patients with unilateral mastectomy are plenty to give statistics for outcomes. 

melisden

My understanding is that after mastectomy, since nerves are cut, there is no more feeling in the chest area.  Does it stay this way always or does some feeling ever come back? 

TB90

Hi Melisden:  I had a mx of the left breast on December 18, 2013.  I had no choice as I have small breasts and the area of DCIS was quite large.  My recovery was as good as it gets, with no complications and full range of motion returned quite quickly.  I had two sentinel nodes removed and the resulting burning feeling in the underarm area was the worst, but not bad.  I have lots of feeling in the chest area where the breast was.  Only right on the scar is some numbness still, but even that seems to be coming back.  Although I had no choice, I have never regretted having a mx.  I knew right away that I would not have reconstruction, but did agonize a bit over whether or not to have both breasts removed.  I was leaning towards keeping the "healthy" breast and when my BS stated that obviously mammograms were working for me and they do not really like to remove healthy breasts, I felt very confident then to save that breast.  I cannot say that has worked well for me as it is only a few months post dx.  We will have to monitor that breast closely and I know that will be very anxiety producing.  But I feel that I will have to closely monitor all areas of my health anyhow, so may as well include the breast.  There is no right answer and I had started a thread similar to this one when I was struggling with similar issues.  I am very pleased with the cosmetic results of my mx and as the other breast is so small, even without a foob, I am quite balanced.  Family, friends, co-workers, etc. have all been so supportive of the flat look and have actually even helped me to feel empowered by this decision.  The Foob works wonderfully when I want a more curvy look. I have found some beautiful lingerie for post mx and have treated myself with lots.  So I can feel free and strong or more curvy and traditional.  I enjoy both looks.  And I have also noticed that no one seems to notice either way.  I was worried that some of the teens I work with would be uncomfortable with the absence of a breast and one day I totally forgot to wear a foob to a cooking class with the teens and it was all over before I noticed and obviously no one else did either and these guys do not normally miss a thing!

Difficult decisions to make.  Good luck with yours and do not ignore your gut feeling.  Once you have made your decision, it sure is a relief.  Take care.   

Ariom

Hi Melisden!

I am another Uni, and had my UMX the day after TB. I never considered having a BMX because for me, I couldn't in good conscience take off a healthy breast, and I didn't consider reconstruction either. I haven't had any regrets.

I have  a "D" cup on the other side, so going half flat isn't something I do a lot, but I have done so much research and bought so many Boobs, Foobs, and Prosthesis that I have just about everything covered.LOL

I do have significant numbness across my chest and under my arm. I had some revision surgery done about a week ago for the "Dog Ear" that was left after my first surgery and I have now discovered a bit more numbness. I must say though, I don't notice the numbness much these days, everything seems to become the norm as time passes.  

It is tough having to make the decisions, but as TB says, once you've made your decision it sure is a relief!

Take care, and ask as many questions as you like.