Looking for your long term issues w bmx without recon

I had bilateral mastectomies 8 years ago (at age 45) for Stage 1 breast cancer. I have a CHEK2 mutation and an extensive family history of breast cancer. I had to have radiation due to the proximity of the tumor to the chest wall. I chose to skip reconstruction and have been very happy with that decision. Bathing suits are a little challenging, but other than that I'm fine. I wear double normal bra inserts in sports bras and A-size prosthetics in regular bras. I use the silicon swim prosthetics which are lighter weight and hollowed out so they aren't as hot. I miss having breasts for the sensation, but implants wouldn't change that. Implants can have more complications after radiation which was a major factor in my decision. My husband has been very supportive of my decision. I'm flat chested, but don't have any concave areas or skin flaps. My recovery from bilateral mastectomies was surprisingly quick and relatively pain-free. I originally had a lumpectomy and the sentinel node biopsy was much more painful than the bilateral mastectomies.

My friends who have implant reconstruction are also happy with their choice.

Leapfrog- for a long time the only mastectomy bra that was comfortable due to the scars etc was the amoena Mona SB. It is not low cut- so I had to add some snaps to some of my shirts. I put size 4 inserts which is equivalent to 34B I think. The inserts are amoena also- my second set of inserts is much more lightweight and cooler than the first ones- the "bra lady" told me if they are too lightweight they just start hiking up under your clothes. I don't mind the weight or warmth because they are rather small and I am often cold. But, a lot of folks do notice the warmth of the silicone. Check out the amoena site- you can order them yourself also. Now that I am further out from surgery there are more bras that are comfortable and my current favorite is the Lara (no underwire). Some of it has to do with your build- smaller frames or other issue so if you had a place that you could try them on that would be nice. On the other hand- I have bought them on line and just returned them if they didn't fit. There are lots of other brands as well.

There used to be someone who posted a bunch of info about this on BCO- don't know if she is still around.

I heard that some people use bird seed- the "bra lady" told me no- not a good idea. the movie "Birds" came to mind.

Exercise, I think your post is really helpful.

we have a lot of women who initially chose reconstruction choose to remove the implants and go flat - a lot of their issues disappear.

I had TEs initially and the pain I felt from my muscles was enough for me to say enough was enough. Therapy is very important no matter what you choose. I had Therapy about 3 weeks post surgery and that really helped my adhesions and tight muscles (that were still recovering from the TE mess).

On Flat and Fabulous, we see results from surgeons and I can say some women who had PS's had horrible outcomes and some women with just breast surgeons had amazing results. I personally had a Plastic guy do the initial removal of the TEs and 'make me flat' and the dude left skin (just in case I changed my mind!) ugh. I had to have a revision surgery this spring to get truly flat. I wish I had let my breast surgeon do the work, but I didn't realize I wanted to be flat until after I chose recon.

Nkb thanks for that. I am very small framed and have bone mets (not sure how many times I've mentioned this...probably lots! Blame it on Tramadol haha) so the heavier prosthesis is a lot for me to carry around. Someone on a Facebook page mentioned Knitted Knockers so I'm going to give those a try. I think my prosthetic bra would keep them in place as it's firm around my diaphragm. I'll look at the Amoena site. I have bought some things from there before as I have to buy everything online. I can't go out shopping at the moment because of Grade 4 Neutropenia and terribly painful bone mets. I'll hop onto the site now and have a look.

Mamaoz thanks for your input, too. I was told about Coobie bras on Facebook as well and I'm looking into that. I think it will be a lot more comfortable than my current prosthesis bra.

Hugs

Leapfrog- if my mother was still alive she would so have loved to knit me a wardrobe of knitted knockers! Let us know what you think of them. I like the natural feel of the silicone when I hug people- I would love to flash a beautiful knitted knoocker- but, I didn't get those genes from my mom

Leapfrog- I didn't get the flashing gene either!

Yes, our local knitting store will make them for you or help you make your own. Knitting has become popular again here- how about Perth?

Hi Leapfrog,

I don't know if you've ever come across my non-profit website, BreastFree.org. On it, I make suggestions for both silicone and non-silicone breast forms, which you might find helpful, and I also offer ideas for bras and camisoles that can work well with breast forms (including the Coobie and Genie bras, but a number of others as well).

For non-silicone breast forms, I personally like the Trulife Tri-Leisure and Tri-Featherweight forms. The Tri-Leisure forms have a weighted core that gives them a little bit of heft, so they don't ride up in bras. I like to wear the unweighted Tri-Featherweight forms in a Still You camisole. Both these forms have a very natural shape but don't cause me to perspire like the silicone forms often do. Amoena also makes a nice non-silicone slightly weighted breast form, the Weighted Leisure Form, Style 132.

I know a lot of women like knitted forms, like the Knitted Knockers. For me, though, I feel that they look too lumpy, even when inside a bra, and I am aiming for a smoother appearance.

It is tricky with the mastectomy bras. I actually found a lined bra and then cut a pouch out and stuffed it. This allowed me to have the smooth front but also a pocket to hold things in place. I am sure j could squash a knitted nocker in there. Sure i could have gotten a batting one in and smoothed it to shape. I will try it to see. I haven't found that the mastectomy bras have that nice lining. They figure whatever insert you put in will be perfectly shaped and smooth but that is not the case if you are not using a traditional silicone prosthetic. The ones with microbeads have a shaped nipple that I would prefer not to show through the bra. I ask my mastectomy shop and they didn't have suggestions for a lined mastectomy bra. Also the silicone prothetics are hot beasts in the summer yuk.

Erica, thanks so much. I'll definitely look into your website today.

Mamaoz .......congratulations!! You must feel so relieved to have that out of the way.

Thanks to everyone for your suggestions. I'm still researching but I think Erica, your website might be exactly what I'm looking for. Thanks again.

Erica Its weird , but Im shocked Im ok with the breast free thing .. im sure it will be even better after the burns fade

They do fade right?? Still looking at the arimidex bottle I know I need to get started

Some people's disappear, others don't. My mother has darkening (but no burns) 8 years after radiation. I'm 2 years out and it's faded but I don't think it will ever go away entirely.

Erica thanks so much. I spent a lot of time on your website on the weekend and selected Still You Illusions as the breast forms I thought I'd like best, as well as the tank top but, unfortunately they don't ship to Australia. I couldn't find a single website that will ship them to Australia and I can't find anything like them here, even on the Amoena website. Sooo disappointed! Back to the drawing board with the suggestions in your post.

Thanks so much Lisey. I've PM'd you x

Erica, thanks. It is very kind of Lisey and we've been in communication. She's offered to help me any time in the future, for which I'm very grateful. Such kindness! But, as it happens, my husband and son will be in Washington on business in November for a week and I've contacted the Still You website and the Trulife website. So far the Still You one has got back to me and told me they can definitely work with me and will ship my order to the hotel in Washington. As that worked out so well, I contacted the Trulife website to ask if they can do the same. I haven't heard back yet but that would be because of the time difference. This way I can have both the Illusion forms and the Trulife Featherlight forms as well as the Still You tank tops. I'm happy!! We decided that, as my husband and son will be there, I might as well stock up on the items you've mentioned that I think will work for me. Thanks so much for your help.

I'm finding American websites are very efficient, at least the ones I've been in contact with are, and there's a huge variety for you over there, unlike in Aussie.

Hi Leidy, just wanted to thank you for sharing your solution. It sounds good and I have kept some of my old bras as I couldn't quite get to the point of throwing them away, even though I've pruned my wardrobe quite a lot but they're underwire bras and would hurt I think but I'm going to give it a try when I get my new, lighter prostheses. Either that or buy some without underwire that are similar. I find I need a bit more than a cutlet thingy to give me enough shape if I want to have shape. I go around flat at home and to my oncology appointments and, as I can't go out very much, I only wear it if I'm having visitors and want to look a bit dressed up for morale purposes. I'm small and not exactly at the age where men are looking me up and down any more hahaha.....as if I care anyway now. I'm just happy to be alive. I used to like wearing those clingy tops with long sleeves and a tunic but they don't fit around the neck area without something to give me shape and I love my tunics. That's just how I look at it but, like you, I respect that we all feel differently about this. Once summer comes to Australia I have a number of tops that are gathered from a yoke or have pin tucks and they look fine without prostheses despite sitting flat.