Large breasts (32J) and single/bilateral mastectomy

helenr

I’ve got a grade 1, stage 2 (2.5cm) tumour in my left breast
and am due to have a mastectomy in four weeks time. I was first offered a
lumpectomy but have had many problems with that breast (multiple cysts,
non-lactating mastitis), not to mention years of neck and back problems. In
addition, it has taken several months and lots of persistence from me to even
get a diagnosis because my breasts are very dense and I had several mammograms before
finally getting an MRI.

I am not keen on reconstruction and am pretty sure I would
get along fine with prostheses BUT I really don’t want “one on, one off” so
asked to have a bilateral mastectomy. From my point of view, it would mean that
I could have just one operation and hopefully move on with my
recovery/life.

This has been turned down because (a) there is no particular
risk to the right breast so it would be added potential for complications and
(b) the breast is healthy. (And at some later date, I would get cosmetic
surgery to balance things up.) On the one hand, I can understand this but find
it odd that I was offered immediate reconstruction (either implants or DIEP) if
I chose, which I gather is a long, complex operation and fraught with potential
problems.

I am not at all keen at the idea of being lopsided for
probably a year. I suspect it isn’t feasible to wear a prosthesis of the same
size and weight as my other breast and am worried it’ll hamper my recovery and
cause additional neck problems. Psychologically I find the idea hard to take on
board too.

I feel like I know what is best for me – bilateral
mastectomy – but clearly this is not shared by the oncologist, surgeon and
breast cancer nurse. I can’t help noticing that everyone I have had dealings
with at this hospital unit is small breasted (or male).

Do I have a different perspective because of my size? Or am
I misguided and should go along with the plan? I’d be very grateful for
opinions from others with large breasts.

DiveCat

Hi helenr, 

I hope you don't mind me answering, even though I have had reconstruction, as I have had to deal with some dismissive providers initially at times in pursuing a prophylactic BMX, and saw my mother have to be firm with her own doctors on wanting a BMX  when they initially resisted it when she was originally diagnosed with ILC (she did ultimately get a BMX, though with immediate DIEP recon)

It seems to be that prophylactic mastectomy of the unaffected breast is much more common and "accepted" in the US (the rates are quite high in the US, more so in some parts than in others), but when I look at rates in other locations, like the UK, it is not so much. Your medical providers are looking at the low risk of a new cancer in the unaffected breast (which, unless you have other high risk conditions like a BRCA mutation) is low, and seeing that the "harm" (being surgery, removal of a healthy breast) outweighs the risk. I expect your doctors are just following the "standard of care" that applies, and depending on how it works there may have to argue for a departure from it.

All that being said, you ARE the patient, and it sounds like while you realize the risk of a new primary in the unaffected breast is low, that there are other reasons, including personal comfort and psychological reasons, and even concerns about ongoing screening and its effectiveness due to density, etc, you desire removal at the same time as the affected breast. While yes, there is a higher risk of complications, that you are going flat certainly lowers this risk than if you were choosing reconstruction, and many women do have healthy breasts removed at the same time as affected breasts (and either go flat or have recon)...or in some cases (like mine) have healthy breasts removed before there ever is a cancer diagnosis. So, it is not entirely novel ground, nor do I imagine it is for your providers...you may, however, need to advocate quite strongly for yourself in this situation.

While some of your particular concerns may in part be due to your size (I was a natural 30E before surgery, so not quite as large as you, but can still relate to where you are coming from) there are many smaller breasted woman who have similar reasons for wanting removal of their healthy breast as well, so you are not alone even compared to smaller breasted sisters. I know it can be harder with universal health care (I am in Canada) to deal with referrals to other physicians, so I would recommend you first go to your surgeon...who is the one doing the surgery and ultimately the gatekeeper of sorts in this issue (in my humble opinion, what the breast cancer nurse thinks is not overriding), repeat your specific and individual concerns and reasons for wanting a bilateral, and state that it is very important to you that both are removed, and advise that if he/she cannot accommodate you that you wish a referral to another surgeon. I think it is very important that you are firm and make it clear your decision is a reasoned one, and not a "fearful" one or else their reasons for not wanting to do it will just be repeated again.

helenr

Hi DiveCat

Thanks – I really appreciate your sound advice – and am glad
you managed and have come out the other end. They do seem to be working to a
“standard of care” - I’ve asked for bilateral due to general
health/psychological reasons relating to breast size, which do not seem to be
valid. Unfortunately, this did come from the surgeon, who suggested his hands
were tied because of these guidelines.

I am booked in for the surgery but still have four weeks, so
will go back to my family doctor and hopefully get referred for a second
opinion. It’s quite disturbing to feel confident that I know what is right for
me but have it discounted - and you are spot on about needing to be reasoned
rather than fearful. Unfortunately, I usually start off reasoned but often end
up venting in frustration - it’s been five months since my first screening -
two months since the MRI - and I feel like a sausage on a very slow moving
factory conveyor belt (not helped by seeing a different doctor nearly every
visit).

SpecialK

I had bi-lateral mastectomies but due to complications had to have the left side removed. While I wait to re-do I am trying to match the right side which has an implant that needs a 34DD bra. I have found it difficult to match that flat side with a prosthetic and mastectomy bra, not impossible, but somewhat of a challenge and I am never totally comfortable or confident. I would have two concerns if I were you - matching as large a natural side with a prosthetic, and worries with leaving a breast that is problematic to image due to density and that causes other physical issues.

glennie19

So they will do immediate reconstruction,, but won't consider a prophylatic MX?  Interesting.  Would you consider  (and would they do)  a reduction of your other breast at the same time as your MX?  I realize that it is not exactly what you want,, but maybe if your other breast is smaller, you won't feel quite so lop-sided and not have neck problems?  Why do they think you need to wait a year to do the reduction?  Doesn't make sense to me if they would do recon at the same time,,,,   unless I guess it's the healthy breast and they just don't want to touch it.

 Just throwing this out there.

I'm 34D,, so not really a lot of help in the size dept,,   hope some others will chime in for you.

Ariom

I was going to suggest the same thing as Glennie! I think that could be a great option for you.

I was offered a lumpectomy and a lift of my remaining breast, but I decided to go with the Umx. I am a "D" cup and have no problem with matching my remaining side, with a breast form. They come in different drape and protrusion, so not too difficult to match.

I wish you all the very best with your decision!

Anonymous

I will share my experience being a uniboober for the last 5 yrs.  I hate it. I am 38D. I am always checking to see that my shirt is high necked, that my bra fits under the shirt that there is no gap,there are so, so many outfits that I can just not wear as they are too low cut. And by low cut, I just mean a bit lower than my neck.  Today I went to get a new bra and foob as mine literally exploded this morning. I went to 2 shops and there was nothing in stock that was appropriate so I need to wait 2 weeks for them to order a new foob and bra.  In the meantime I am stuffing my bras with whatever I can find.  Summers are the worst as tank tops, T-shirts,  and bathing suits all show too much chest so I am always wearing a cami under a shirt and it is hot.  I also feel really  unbalanced without a bra on.  So even when having a lazy day and just lounging around the house, I now need to wear a bra as it is so uncomfortable to be flat on one side.  I have significant shoulder dent from the weight of the foob.I wish that I had either immediate recon or taken both off.  When I did go for a recon consult, the dr did ask if i wanted the good one take off as it makes the recon effort easier with better results.  My input is solely based on looks and convenience of clothing and fashion,etc.  I hope this helps.

Sunny_Girl

I was 53 when I was diagnosed and had surgery - well endowed.  I had more than 1 type of cancer in my left breast (with dense breasts). 

My sisters all had weird lumps & bumps in their breast with mammograms, ultrasounds and MRI's done to confirm there was nothing wrong.

I was offered a single mastectomy and I just stared at the female surgeons & said incredulously - take them both off.  They've been great boobs, but they've gotta go.  I never thought twice about it.  I figured there would be enough for me to worry and fret about in the upcoming years, that having to even give one second of thought to breasts wasn't in the cards for me.   

I understand where you are coming from & hope your providers can hear what you are asking for - be pushy if needed.  In the end, the squeaky wheel gets the attention!

Patty

Ariom

Hi thisisme, I am sorry this is your experience as a uniboober. I am one too and I am also a 38D. I know we can't all have the same experience, but I have been doing lots of research and through trial and error have found a lot of comfortable stuff that has made the transition from 2 to 1 a lot easier. I know that a lot of stores only keep a minimum of styles in both the bras and the forms, but with some searching, you can find things that suit you and make it a lot easier to adjust.

Although I occasionally wear a silicone form in normal Mx bras, I even have a Contact form that attaches to my chest. The Amoena Mona, is my favorite everyday bra. It is really important to find the right Mx bra for your needs, there are many of them that are useless to me, it has been a lot of trial and error. I actually wear a weighted foam form most of the time. I really love these, my favorite being the Tru LIfe 611, these are available for around $40.00 eah or 2 for $72.00 at Metromedical online. These forms are much lighter than the standard silicone and can be worn in Mx bras or even in the knit style Genie bras that are softer and not as structured as Mx bras. I also like to wear athletic crop tops, they are unstructured and the lighter weight of the foam forms make it a really comfortable and they are also cut high enough on the chest, so as not to expose your chest if you lean forward. My favorite camisole is the Amoena Valetta, they also make a Tshirt and even dressy tops with the bra built into them. I wear these items most of the time these days. I have also found that a shape wear tank top, with some firm control is a way to go without a bra or form if just at home, it can reel in the rogue puppy on the other side and I don't notice any lop- sidedness.lol

I tossed out all my v neck and low cut tops and now find a boat neck T or just a higher round neck is the best. I also like a button front stretch cotton shirt with the Valletta Camisole underneath. It can take either the silicone or light weight foam form and can be dressed up or down and is just so comfortable, I don't feel like I am wearing anything.

I am in Australia, so we have a very hot Summer. I live on the water and have found a number of Mx swimsuits brands that are really comfortable. I like the Amoena Tankinis especially, because they sit well on the chest and hold a swim form without any risk of a malfunction!

Edited to say..I tried to make "normal" bras and swimsuits work for me in the beginning, but quickly discovered that Mx specific does work, so much better, they are engineered differently, with straps that are cut rounder so as not to fall off your shoulders, armholes cut lower so as not to irritate after node removal and fronts of swimsuits and bras, cut higher to incorporate the form and hold the item closer to the chest.

I hope some of this may be of help to you, good luck! 

amygil81

Helenr, I am also a uniboober, have been for many years now. I am also a D cup, so my missing breast is noticeable when I don't wear anything in my empty bra cup. I've made do with one breast and a foob for so long that it's just part of my life.

My surgeon occasionally mentions doing a prophylactic mastectomy if I wanted. She only recommends it as the standard of care if the patient has lobular bc (I don't), but she'll do it for others if they insist.

I've never really been tempted. Partly, to be blunt about it, is that they've already cut off enough of me for this damn disease (bone cancer as a teen, and now breast cancer). If I had cancer on the other side, of course it would have to go, but not until then.

The other part is the loss of sexual sensation from my nipple. That's what I miss most from losing my breast. I find it somewhat more difficult to get things started, and also somewhat more difficult to reach my orgasm. I'd be really sorry if I lost the other one as well.

Anyway, that's what works for me. I wish you the best in this tough decision, and in all of your bc journey.

MSP123

Hi,  today is my first time posting. I have one large breast and am having a hard time finding a comfortable prothesis that isn't too heavy if silicone or too high if foam.  I wear a 38D and am really tired of being so lopsided. Help would be greatly appreciate. 

Ariom

Hi MSP! I am a Uni 38D too. Welcome! I am sorry you have to be here, but glad you found us!

I can't stress strongly enough, how important I think it is to go to a reputable fitter and try several Foobs on, to find the right weight, there are different weights, and very importantly, the correct drape for you. I know Amoena has about 3 different drapes, or protrusion in their Breast Forms. I really love the weighted foam forms made by Trulife, but there are others available.

I have posted above about my research for items that have made this transition easy for me. I know not everything will work for everyone, but there are a few things like the weight, drape and the height of the neckline, which is pretty much universal and it is necessary for all of us to find what works, for us. Once you find these, dressing becomes easy again.

Just ask anything, everyone here is very willing to help out with any information we can pass on. Take care!