How to make this decision?

You could always get a prosthesis.  I had a uni-mx  four years ago and wear a prosthesis.  It is very comfortable and I don't mind it at all.  (The one I bought was called an Amoena light.)  Just throwing that out there.  Good luck to you.

Belleb--The radiation oncologist will make the final decision/recommendation about radiation.  Radiation is helpful in preventing local recurrence only.  I don't know if TNBC has a high rate of local or distant metastases (sp?), but I think that's a great question to ask.  I didn't realize until just recently that my radiation treatment did nothing to help prevent distant recurrence, which for me is a high risk.  

I can understand your feelings about not wanting to have breast tissue.  I made the decision for a BMX when I found out that I wasn't going to have the options I wanted for MRI rather than mammogram in the future.  A good question to ask might be what sort of follow up surveillance they have planned for you and/or that your insurance company will pay for and ask yourself if you are comfortable with that or not.

Regarding clothing, I was worried that nothing would fit and that I would have to buy a lot of new clothing, but I haven't.  I'm using various prosthesis and other than my recent post about evening wear, I wear just about everything I used to except for clothes I had to get rid of due to weight loss in chemo (change in size all over, not just in bustline).  I am wearing a D cup bra with comparably sized prosthesis.  I never go flat except around my house at bedtime.  

I hope this helps!

belleb - I was considering no reconstruction but my breast surgeon said go talk to the plastic surgeon first - which made sense to me & because I had a UMX, I have had reconstruction (i'm still in the 'middle' of it so can't say how I'll feel about the end result). I wouldn't get my mind set too much one way or the other until things become a little clearer - if you can have an 'easy' lumpectomy (they are not all the same) and rads with the rate of recurrence being equal or less - then that might be the way to go. If you have a BMX & want really small breasts, it might be possible to just have implants placed at the time of surgery. And what's wrong with flat & no prosthesis? You might ask about nipple sparing MX - or maybe you'd like the freedom to go braless whenever.

Most of these decisions are about what you  are most comfortable with. Do not listen to what anybody says - you can have a new wardrobe whether you get reconstruction or not & you'll have more money to spend if you don't. Listen to yourself. This is your body, nothing that anybody else thinks matters (with the one exception being your husband & he married you not your boobs). 

Hi belleb,

After I had a bilateral mastectomy without reconstruction, I decided to create a non-profit website, BreastFree.org. The site has personal stories and information that might help you as you make a decision about lumpectomy vs. mastectomy and reconstruction vs. non-reconstruction. I met many of the women who contributed stories here at this forum (my own story is the first one, Barbara's Story--Barbara's my real name).

I personally had exactly the same concerns as you express--I didn't feel good about putting foreign objects in my body and I also didn't want to subject myself to the long surgery that flap reconstruction requires (and often there's a second or even third surgery necessary to get the flaps even and well-shaped). I did consult a plastic surgeon, but ultimately decided not to reconstruct. I do wear breast forms, but often unweighted ones in a soft camisole (and sometimes silicone ones in pocketed and regular bras). Like you, I like the idea of being small (I was originally a 34B-C cup) and tend to wear size A breast forms. The way I think about it, implants are internal prostheses, while breast forms are external ones (that I can take off at will!). You could also opt, as many women do, to go flat entirely.

Best of luck with your decision.

hey there -

i opted out of reconstruction, and i fortunately did NOT have a bunch of health care providers pressuring me one way or the other. i chose to have a bilateral mastectomy… and i'm flat.  i do not use prosthetics.  in general, i don't' think people really notice…  i'm pretty athletic, and i think i just look a little thinner without boobs.

i had c cup boobs, which was a lot of boob for an athlete. i don't miss my boobs at all - not one bit. i do miss my nipples, though.  

anyway…  this is an incredibly personal decision…  i also had chemo first, which afforded me the time to really figure out what i wanted to do. my first response, upon hearing my diagnosis, was bilateral mastectomy.  after chemo, i still felt firmly that bilateral mastectomy was the right choice for me. i did not want foreign objects in my body… and i did not want to undergo several surgical procedures. so, flat i am…

there's a Facebook group called flat and fabulous. tons of great women there…  anyway - if you're really thinking about going flat, consider checking the group out.  

and… i'll leave you with this… i LOVE being able to jump across my office… jog across campus… jump curbs on my bike… BRALESS.  do i think some clothes would look "better" on me with boobs?  yeah - i do think that… but i've started moving away from those items…  

i hope that helps.

may your chemo have a minimum of side effects but maximum efficacy!

belleb, when I had to go with mastectomy I chose BMX and no reconstruction for exactly the reasons you mention in your post. I had infected seroma after MX, which would have likely caused loss of any reconstruction if I had chosen that. I have talked with many women who have had issues with more pain, infections, loss of lung function in a singer, loss of lung and muscle function in athletic women. I DID go see a PS just to appease my BS and DH, knowing there was no way I was going through MORE procedures that take up to a year or more to get it right, and then it would never feel like a normal breast - still have loss of sensation and touch, it would just "look" right to OTHERS. I am obviously VERY comfortable with my choice, but it is a VERY PERSONAL choice, and the thing to know right this minute is that YOU CAN CHANGE YOUR MIND and have reconstruction after you are done with chemo and surgery and rads if needed. You can give yourself TIME to get used to your body after it has been through all the aggressive treatments, and see how you feel THEN. You may very well want to have reconstruction at that time, but you can take your time and really consider the risks and benefits. 

As far as clothes - it is a bit challenging at times, and I HAVE used prostheses on those occasions when I had a really dress-up thing to go to, but mostly am very happy to not have to wear a bra, use scarves and vests and other types of clothing that I have worn most of my life anyway. Someone commented that I looked like a little girl one day, but I am short and thin. And honestly, I think most people don't look or notice or care if you are small and thin, but they are much more likely to look and notice if you are extremely well-endowed.

There are a couple of threads here that discuss clothing choices for women who choose to go flat and for those who use prostheses part or all of the time. There is a lot of support here for those who choose no reconstruction, and there is also a lot of support for those who are going through reconstruction as well. 

Sorry this is turning into a book, but I just want to make sure you really understand you HAVE TIME to make this decision. Right now, your job is to take care of the cancer. The way you look afterward is secondary FOR THE MOMENT, and you can take the time to see how you feel about your body and the way it looks. (The only time this is NOT true is if you are considering IMMEDIATE reconstruction during the MX. For implants with tissue expanders and flap-type procedures that take tissue from your own body, these can wait).

Best wishes on your treatment, and ultimately, it is YOUR body - go with what your heart and gut tell you! Sending lovingkindness across the miles - be gentle with yourself.

Hi Belleb,

I'm triple negative.  Aged 61. I was stage 2b with a confirmed positive node at the time of diagnosis. I'm BRCA negative. I was told because of my TNBC node positive status at the time of diagnosis that they recommended radiation with either a lumpectomy or MX.

I just finished my neoadjuvant chemo last week and I'm scheduled for surgery on Feb. 2.   

I'm assuming you will be tested for BRCA particularly due to your age and TNBC status.  My own personal plan was to get a BMX if I was BRCA positive and a lumpectomy if I was negative.   Since I turned out to be negative, I'm going with the lumpectomy.   

 I thought I'd share with you the input I got from my doctors about lumpectomy vs. MX with TNBC.   I am getting treated at Vanderbilt in Nashville and my MO is a leader in the field of TNBC.  She told me that I really didn't need to get a BMX even if I was BRCA positive.  My chances of survival would be the same. My breast surgeon also encouraged  me to get a lumpectomy even with TNBC.  She said if I do get a local recurrence, it's easier to treat if I have had a LX vs. an MX.  (I think she was addressing ease of treatment  from a surgical perspective.)

The big differencesbetween you and me are our ages and the possibility of your  BRCA results being positive.  I don't know if my MO's advice on surgery would have been different if I was 35 like you are.

In the end, it's a really personal decision that you make.

I completely agree. I was diagnosed last week, Left Breast CA, grade 3, 0/3, mets. . The easiest decision for me, is a bilateral mx. I hope my surgeon will agree with my request.  I want no more surgery than necessary. I have always felt my 36 D an inconvenience!!  

I was afraid doctors generally pushed for reconstruction, glad to see that is not the case.

I had a BMX, no recon and am happy this way.  I did not need a new wardrobe.  My clothes look great. 

I cannot wear super low cut dresses (but I couldn't when I had breasts either).  Aside from that, I can do most anything and actually it's better than before.  I have a wide range of different bras and forms for different things.  Last night I found a killer bikini top in Target and it looks amazing.  I have a slim athletic build and never had more than an A cup to start so the change was not as bad as all that.  Actually I go bigger now than before.

Its a very personal choice.  I did not want more surgeries, my husband didn't want me to have more surgeries and I did not want the upkeep of implants or the idea of taking one part of me and turning it into a breast.  So I did the flat thing and it's fine.  Some women might not like it, you want to be flexible in your approach.  You won't look as good naked, you just won't.  On the other hand, the world of lingerie is a vast space and much can be done....I actually have fun with this stuff, far more than ever before.

aunt__paula

 So you've healed ok & feeling well? 

I bought some cheapie camisoles that have a very thin removable liner in the cup 5.88 at WalMart jr dept. I am very small breasted, flat chested as it is so I won't look all that different when dressed.

 I will be having my BMX on the 13th. No decision on recon...I will get the chemo out of my system, heal my chest, get through rads, enjoy the summer THEN re-visit the reconstruction idea. I may be perfectly fine living the flat life, (which is not new heheh) wearing a padded bra as I have done all my life LOL But who knows. We just don't know where our head may be at huh. I am glad I made the decision to just have the BMX for now. Just don't want to think about the Flap & expanders, then implants, 3 more surgeries....

Take care!

Thanks for the reply Aunt__Paula

You sound good!

 I had a lumpectomy & 14 nodes removed (2 positive) end of August. One drain. My only issue was I developed a seroma at the incision site that caused some swelling & pain.

 I guess they give about a month to heal from BMX before starting radiation. I do have to go for a Herceptin infusion 5 days post op, we will see if I am up for that!

I can't have a TE on the radiated side & not sure about the dorsi flap procedure....lots involved. Sure is a lot to wrap our heads around.

Hey BettyBoops

 I do think the medical profession and society both play a HUGE part in making us believe we have to have breasts after a mastectomy, that recon is the only option.

 I had my bmx a week ago, no recon. The BS told me yes I could have TEs then radiation then implants... that was my hope yet I knew all along it wasn't going to end up that way. I saw the Plastic Surgeon and he said NO WAY to the TE on the cancer side, he won't do them when radiation is upcoming. He  told me he'd do the lass dorsi flap. I was stunned, bummed and confused. Went home not knowing what to do, I had two days to make a decision since BS was setting up a surgery date. 

It was my husband who made me stop and think. He said he just wanted me to do whatever needed to be done, whatever procedure to save my life that didn't cause more pain and grief. He didnt want me to make a hasty decision, nor did he want me to go through several surgeries. I was just a month post chemo and my body and head both needed time to get it together. 

I was always very small breasted so never was defined by my breasts. And I always wore a padded bra. So in some ways I can think when all this is said and done, after healing and rads I won't look very different at all to everyone who sees me. Foobs, padded bra whatever I will look about the same as before ! of course naked is another matter. I never wore a bikini or a strapless gown and never will LOL

My friend knitted me some soft foobs I can't wait to try. I plan to get fitted for prosthesis and bra since insurance will cover it but have a feeling I will be wearing regular bras with light weight foobs. 

I wish all thebest to you. You've been through a lot and it's a tough decision but you sound good and clear about it!

I am a year and a half out from my BMX.  I am very grateful that my surgeon was very up front with me.  Because of my age at the time, 32, and having two positive nodes, radiation was part of the plan.  Technically it falls into a gray area clinically, but I went for it.  At first I went completely flat.  Then I got prothesis, which I RARELY wear.  I use a bra now called the handful bra that has padding to smooth me out as I did choose to have a skin sparing mastectomy.  I was a DD before, and I wear all of my old clothes.  I do add tanks under some shirts, but I also have an active 2.5 year old that often yanks on my clothes  

Maybe some day I will go for natural tissue recon, but for now I am happy being me.