Nervouse about getting prosthesis for the first time

Beth, you do not have to hurry or meet anyone else's schedule to get fitted for a prosthesis, especially if you've had a bilateral mast. After all, no one can claim (like the fitter did to me) that you need to wear a prosthesis because the difference in weight on your chest will cause your spine to curve!  (My remaining breast is approx. 36A, so I argued that the difference in weight was trivial.)

One of our BCO "sisters" manages a website called "breastfree" (http://www.breastfree.org/) that she created to help women who were considering, or already dealing with, bilateral mastectomy without recon.  Her screen name is "Erica" (real name is Barbara).  I'm sure she'll come along any time now, to help with your question.

Being fitted for a prosthesis can be a satisfying, fulfilling experience, or it can be psychologically traumatic.  IMHO, it all depends on how ready we are and how competent and compassionate the fitter is.

There is a thread on this forum that deals with our "first fitting."  I'll try to find it and bump it to the top of the list.

Hugs...

otter 

[There--see?  Barbara posted just ahead of me!] 

Beth

I suspect most people are a little nervous.There is no way around trying on a lot of bras and forms. If you can't find something- wait. I got a form the first time, but couldn't find a bra that fit. eventually they found one that fit me. In the mean time, I just used the form in a regular bra.

trish

Beth,

I had a bi mast in September.  I waited until January to get prosthesis and bras.  I went to a local mastectomy supply shop.  I already knew the owner/fitter because I ordered some camisoles through the store before the surgery.  The whole process was amusing to me, I think because I had sort of gotten used to being flat chested.  When I tried on the first set of forms I burst out laughing -  those 'bumps' on my chest really looked funny to me.  And when I wore the forms in public for the first time, I felt like a teenager.  These days I usually save my forms for formal occasions.

Anyway, if you are nervous I suggest making the appointment for your fitting in person so you get a feel for the store.  Also, take a friend along if you think that would make you feel better.  Finally, I do agree with the folks who say there is no need get forms before you want to.  And if you never want to, don't worry about it.

Hi Beth - Hope this helps some as you take the next step. I was ready before they would let me - partly because we had a cruise planned before all of this started! The poofy just didn't match and was awkward. When I tried to make an appointment, they told me that I wasn't ready - that it had to be at least 8 weeks before I could get a prosthesis! I agree that I had never had this experience before, so couldn't really guess how it would feel, but I knew my incision! I requested that they at least fit me for a foam type prosthesis, and they reluctantly scheduled me for the next week! When I went in, the "girl" was amazed! "WOW - you really are healed well!" Anyway, the foam was MUCH better than the poofy and worked well for our trip. I was re-fit for the silicone prosthesis once we came home and am very pleased with the shape, match etc. It doesn't seem too hot, fits my bra well, and feels better than the foam! Maybe it helps that the prosthesis is in a cover and then inside the bra pocket also. There's no rush, we're all different, so it's OK to wait if you want.

I had bilateral mastectomy on 01/26/09. I recently got fitted, once my scar  and the burns from radiation healed. I went through a medical prosthesis compay.  I heard about nordstroms so one day I was at the mall with my   21 year old son and I told him lets go  and see the prosthesis and bras, I looked around the whole bra section area and could not find them so I asked one of the workers and she said yes we have them so I followed her thinking there was a section I missed, No . she went towards the back behind the storage doors and came back with 2 bras and a prosthesis. she was nice, but  I felt awkward like there was something to hide. i couldnt just go look at them on my own on a rack, even if they just had a small area, not hidden behind the storage doors. My son asked me why do they have them hiding. I told him maybe they don't want the other women to feel bad like breast cancer and women without boobs don't exsist.  when I got my prosthesis and tried them on and put on my t-shirt ,I was overwhelmed with emotion. I cried, to see myself  like I was before and the realization of what I lost. I was not prepared for my reaction and feeling.  Good Luck. lots of love

they do kind of have mastectomy patients in a hard spot!

My fitter told me I was a 34B. I think that leaves me with an unhappy roll of skin under my arm so I moved myself to a 34C, which IMO is better, although it does depend on the bra. I think while dress sizes have expanded -what used to be a size 10 is now a size 8- that bras sizes have shrunk. Everybody wants a smaller dress size and a larger bra size.  

My point being - don't buy too many bras at the fitters. You need to wear them awhile and see how they do. You can always come back or gasp - go online and order them. If you have a receipt with the medical code you can submit it to your insurance for reimbursement. I've bought them out of my flexible spending account and that's what they look for to approve.

My insurance only has 2 providers in the area.  One of them only carries one brand of prothesis/bras, Classique.  Lots of choice, huh?  Plus, they're hours are kind of odd and you have to set up an appointment.  The second shop carries more brands, so it is better.  My insurance only allows 2 bras per year - how generous!  I've been buying on-line, since I'm not particularly fond of the bras that were covered by insurance.  I even asked the shop about "upgrading", and they said you have to buy the bra and then file with the insurance company yourself for the reimbursement for the difference.  Way too much hastle, if you ask me.

I even bought a new form on-line, and it worked out great.  Again, when I went to the fitter, I mentioned that I was interested in a climate control type form, as I do sweat a great deal.  She said "you can just put a cover on it, and the pocket in the bra will also make it OK.  The form I ended up with was comfortable, but I would sweat right through the pocket, even during cold weather.  No way I could wear it without a cover in a regular bra, either.  Gets kind of annoying to have your chest damp all the time!  I now have a Silique Comfort Lite, and I no longer sweat through the bra.  Plus, it doesn't pull that side of the bra down like my old form did.  I'm only a large A, so I hate to think how far down the proth side would hang if I were larger!

The best fitters in my areas are not providers for my insurance, unfortunately, so I'm pretty much stuck with what I have.

Beth,

Your story sounds a whole lot like mine--left breast cancer, but a surgeon who said she never discouraged bilateral mastectomies, because she saw too many patients back in a few years with a recurrence. 

I also did the Oncotype DX test (with results that didn't get back in time, requiring me to change my first appointment with my oncologist), but when I did get the results they gave me a very low chance of recurrence.   For those who don't know, this is a test of multiple genes that gives a numerical result indicating your risk level for recurrence, and in my case, saved me from having to go through chemo.  As of last year it was only being done in one lab in the country, and insurance sometimes balked at paying for it--they did, but not without a medical necessity letter from the oncologist. 

Anyway, my surgeon's office suggested at least 8 weeks before being fitted, and recommended  "bosom buddies" (website www.bosombuddy.com).  This is sort of in between the fluffies and a silicon prosthesis; it's sort of a fabric envelope that you can add or subtract small pillows of glass beads to get your exact size (I think they're about $75 each--and be careful about charging your insurance for these since they'd probably mean insurance wouldn't pay for a silicon prosthesis.)

 Like most of you, I thought I was 'supposed' to go get a silicon prosthesis, and a year later I'm questioning that decision--Texas summers are hot and that silicon is even hotter!  I've been spending more time going braless, have been investigating reconstruction and don't like the alternatives--but that's another thread!

Good luck with the Oncotype test results!

Shar 

janie-r,

You can try a foam form anytime but I found that even foam forms irritated my sensitive chest for the first few weeks. After about three weeks, I was able to wear them for a few hours at a time, so I didn't feel self-conscious going out. Before that, I wore the puffy fiberfil forms with a post-surgical camisole. The foam forms (like Amoena's Style 126 or TruLife's Tri-Featherweight) are marketed as post-surgical forms, specifically meant for the period after surgery. It's certainly worth giving the foam a try. If it's not immediately comfortable, you can still use it later for leisure and exercise and even swimming. I wear my 126s often during the day, with a Still You camisole, and I use them for exercise and swimming.

Unfortunately, there's a problem with the 126s manufacturing process at the moment, so they're hard to get, unless your size is in stock. Trulife and others make good alternate options.

Good luck!

Barbara

I'm 8 weeks "out" and finally pulled myself together to make the appointment to get "fitted". Next week. Um - now what? I had a unilateral mastectomy, but no lymph nodes as they were already gone (lumpectomy and axillary dissection 9 years ago on this same side). I'm smaller busted, a 34 barely B on my best days, so smashing the remaining side with a sports bra and wearing blousy shirts has been my new style.

I have worn my regular bra with the fluffy thing to fill it out a couple of times this past week with decent results. It rides a tad bit high, though, and sure does feel odd. I get that odd may be the new reality.

I guess I should take my regular bra to the fitting? I can sort of see the benefits of a mastectomy bra, but considering my smallish size - does that make a difference regarding the requirements? I'm a decent seamstress and figure I should be able to add pockets to my existing bras; has anyone done this?

I'm going to the only place around that coordinates directly with my insurance. If I'm not pleased with the offering I'll decline what they have and head to Nordstroms. I've heard my local one does a good job. I'll just have to handle the paperwork and have it go to deductible for out of network. But this is not something I'm going to compromise on.

Any tips on getting through this would be appreciated. I'm not looking forward to the process, but WOULD like to be able to wear some of my regular clothes again. It's challenging being a single breasted lady.

If a bra has more than one layer, you can just slit the layer closest to your body on each armpit side and turn over the edge and make a tiny handkerchief hem around the slit. Just takes a few minutes per bra. Also, I've got a few camisole-type sports bras in which I've made a single slit down the middle and which I wear once in a while with Amoena 126 foam prostheses.