BILATERAL MASTECTOMIES

Anonymous

Hello ladies ~

 Been dealing with no boobs since Sept. 2008.  I live in a tiny, remote community, and I mean remote.  Since surgery I have not talked to one woman face to face that has had bilateral mast.  I have no idea where to go for such things as swimsuits, or tops that don't show my saggy scarred chest. Finally got the nerve a few days ago to throw out stuff I can't wear any longer - bras, nightgowns obviously made for women with breasts, etc. I do wear prosthetics every day. I have one nightgown with built-ins. This has really taken a toll on my 18 year old marriage.  I am going to be 57 this July.  I have dealt with people who have no clue what I'm going through and think the trauma ends with the chemo.  This includes family members. They have no idea why I have days when I'm just tired out and emotionally drained.

 Are there support groups for women specifically dealing with double mastectomies?  Hauling my 'gear' around on holidays is stressful and so is the thought of going flatchested.  I admire those of you who can do that but I cannot.  I had mean things said about my hair and weight gain and I cannot imagine what would be said being a flatchest around such people.

 Any help would be nice. Any tips would be appreciated, thanks!

tucker

faithandfifty

Tucker. I had a BILAT in Jan of this year.

I still find most of my support here at BCO.

There is an entire forum under the section: Tests, Treatments & Side Effects

entitled:

Breast Prostheses and Reconstruction Alternatives

Opting out of breast reconstruction? Discuss prostheses, swimsuits, bras, etc.

Anyhow, there are allllllllll sorts of threads there with all sorts of topics and support.

Currently we are discussing some lesser expensive cami's available at Target among lots of other thoughts & experiences. There are some great pictures that folks have posted.

I'd encourage you to track this section down and wander around "introducing yourself."

I wish you all of the best.

Wishing you well.

xx00xx00xx00xx

Strength and courage.

Strength and courage.

Strength and courage.

Edit for a picture at the top of the page (one of my very few idiosyncracies. LOL)

Here's me in polka-dots, being super brave -- wearing a bathing suit in a resort pool, just about a month or so after my surgery. Just so you know that it can be done. Of course I was taking my "happy pills" at the time.

Isabella4

Faith, you can't tell at all, WHAT have you got tucked in your dress ! Have you pocketed the sundress ?

I just look flat, with a white star shaped scar towards the middle of my chest where my port was...this really shows if I wear anything even slightly open necked.

We have been having a mini heatwave, and I have been trying to wear strappy tops ( WITH a shirt over the top !!) I hate my bra straps showing at all, but don't have a choice if I want a normal shape. How I'd love to throw on a strappy top, and go out and feel the sunshine on my back.

Isabella.

ACole

Wow, Tucker. I'm so sorry to hear about the lack of support that you've gotten.

 Breast cancer (and double mastectomies) are tough,tough things, and tlc is definitely in need! I'm 47 and had a double mastectomy and one thing that kept me going was knowing that soon, I'd have much better boobs than I ever did naturally. It sounds like you chose not to have reconstruction, but maybe you should reconsider? It's a very personal choice and everyone has to do what is right for themselves.

I just got mine done, and I have to say, it's fun to buy new clothes to go with my size C's. I had tissue expanders in since the mastectomies and the surgery wasn't difficult at all. Honestly, I never cared much about my breasts and would never have had them augmented if this hadn't happened. Just making lemonade, I guess. Best of luck to you.

Suzybelle

Tucker, I am so sorry you're having a hard time.  The bmx is no fun and it's a big adjustment, for sure.  I had a bmx in Feb. of this year, and I opted not to do recon., and I also opted not to do foobies.  I go flat-chested.  I love not wearing a bra and once I got over the initial self-consciousness, I did fine.  I wore a swimsuit today and was flat as a flitter.  I thought I looked cute.   Kind of like a red-headed toddler!

Seriously, I know it's a very personal choice.  Each of us has to do what we can live with.  For me, it really stuck in my craw that I was supposed to opt either for surgery or to wear an uncomfortable bra (have lymphedema on the right side and under my arm and back it hurts to wear a bra) just so other people wouldn't have to deal with my cancer.  Most people don't even notice that I don't have boobs.  Those that do and are critical, I don't really give a flying flip.  These are the people who probably wouldn't have thought I measured up before my surgery, either. 

And I'm sexy without boobs.  I'm sure there are people who would disagree, but as I said before, they wouldn't have liked the looks of me before my surgery.  Maybe smart aleky red-heads aren't their bag!   I have decided that life is too short to worry about what the wieners think.  I wear red lipstick, lots of pearls, bright colors (along with my stupid compression garments) - I just do my thing and if somebody doesn't like my flat chest they can KISS IT. 

There are some great links under the forum that Faith mentioned, but you can also find some really cute dresses and tops that aren't designed for mastectomies, and that are way more affordable.  There are some great threads in there.

 Hugs to you - I know how that feels to worry about how you look and feel like you don't measure up - it's not fair that you feel that way.  You didn't ask for this and I am wishing you lots of peace and happiness.

Suzanne

Anonymous

Thank you for your kind words. I've gotten precious little of that where I live, out in the boonies with a bunch of mean old ladies for neighbors. One actually said to me shortly after chemo (she doesn't know I had bc) 'you've gained some weight'.  I was speechless!  I would NEVER say that to anyone. Them is fighting words to say to a woman!  I could have said, 'yeah, and you look like you could use a few pounds'...but I just smiled and helped her open her po box. That's the way I am....smile and keep going.  Negative comments about my hair (it was a wig) and other stuff make me wonder what on earth they would say if I was flatchested!  I admire those of you who can thumb their nose at these idiots...I try but then I go home and cry.  

My daughter, my only child, lives 1000 miles away and I have not one family member close by. We had no idea this would happen to us and were not prepared. Well, who could be?  My hubby is my sole support and a few women at church. Otherwise, it is a closed community and they consider us outsiders - we are from the States and moved to Canada about 6 years ago.  I had the aneurysm happen in 2006 so it's been one fun thing after another!  I have not been able to get out & about much since we moved here.  I"m trying!

I'm so glad you wonderful women are here. You do understand what this is like. I miss my boobs- imperfect as they were, they were mine.  I am considering implants...but wonder - how do they detect anything behind the implants? Do you have mammograms after implants?  Right now the doctor can see/feel w/o a problem.

You all truly have beautiful attitudes, and Faith- with that smile who would notice boobs? What DO you have in there?  Looks natural. 

I will try to find some of those threads. I truly cannot stay on the computer too long because I get headaches....is saline or silicone implants the thing these days?  What questions do you ask a potential breast implant surgeon? 

Thanks girls.  You're the best!

Dianne - tuckertwo  

Debwa100

Hi BC, I had BMx and the left side was phrophylactic.  I wanted to be on the safe side, but to tell you the truth, even if I didn't remove the left, I would have probably put an inplant in that side for symmetry.  Then I would have been worried that I would have developed BC ont he left (and yes, it is more difficult to detect BC with an inplant) That was another reason I decided to do both.  As far as what to wear, I find tube style bathing suits or halters work for me (i use padding from old suits).  I have TE's now, and only the left side is partially filled (stitches still need to heal on the right, so I am creative with the padding).  I didn't want to be bothered with prosteses, because I knew my size would be changing each week or so. I live in NJ and there is a place called the Bra and Girdle factory, they sell mastectectomy bras and cute suits (not cheap).  I'm not sure if you can shop there on line, but there are plant of mastectomy suits online.  Good luck, and I'm sorry your neighbor is such a rude b#$ch. 

franie

Tucker, I too am a bilat and live in a smaller town. There are a number of places on the internet that sell mastectomy wear. I too wear prosthetics which I purchased over the internet. I am very flat and had my spare skin removed with no plans for reconstruction. I have chosen to wear heavy prosthetics as I like the feel of the weight and my bra doesn't ride up. Many here have chosen to go flat or wear light weigh prosthetics. It is all what one is comfortable with. I know Jodee makes a bra with built in forms in many sizes. Keep posting you are not alone.

 Franie 

Anonymous

Does anyone know of a reputable place to buy mastectomy clothes? 

 I am looking for a 100% cotton nightgown (they breathe) with built in boobs. The ones I have seen online look like something my grandma would wear. The top part of the gowns are heavy looking and draw attention to that part of the body. Ameona makes a gown with builtin boobs, but it is a non cotton material and is hot & sticky to wear at night.

Also am looking for outerwear tops that you can insert the silicone types or the lightweight type of boobs.  I have seen some outerwear tops but they are about $100 which I think is a ripoff.  It would be nice to be able to buy sun tops, dresses, etc. I am not good with needle and thread. Thanks for your help, ladies.  I appreciate it!

tuckertwo

sandiddstn

Hello ladies!!!   Am new here and just read all the post.  I to had a bilateral mastectomy.  It has been 7 weeks today since surgery.  Had port put in yesterday and chemo right afterwards.   I also live in a small town but the ladies here are very good to me, thank God...

I want to know if anyone has had 7/15 postive nodes. And not had any reconstruction done yet.  My doctors said for me to wait untill chemo and rad are over.  Is this normal?

sandiddstn

ACole seems like we have the same bc.  They told me when I was first dx that it was not in the nodes and only in stage 1, but now they are telling me that I am in stage 3 grade 2 and that it was in 7 nodes.. My doctor was very very surprised, cause all the test did not show it was in the nodes.. I was really takin back when I woke up..

Now doing Taxol for 12 weeks then Adriamycin every 2 weeks for 4 cycles with cytoxan.  

happymom8285

Don't see any postings since June.  I'm a newbie. BMX 6 weeks ago.  I am doing recon.  Tucker, how far away is your hospital?  Wouldn't they have a listing of a support group for BC?  Might be worth a try if it's not too far away. Is recon out of the question for you?  I hope you're getting some tlc since your last writing.  This is a great place to vent and full of support!!

sanddidstn--you don't live very far away from me.  Chattanooga, here. Hope you're doing well, too!

lago

My BMX is in 2 weeks. To be honest for me that is the least of my concerns… granted I have little boobs anyway. I look like faithandfifty right now. I never had cleavage. Of course I haven't gone through this yet so I don't know what I will be feeling.

But that's me. I know if someone told me they were going to remove one of my beautiful eyes and replace it with a glass one I would be a bit freaked out for a while. We all have things about us that we think define who we are.

There will always be mean people. (Mean Girls) They are like that dessert that looks so awesome on the outside then you take a bite and you want to spit it out in your napkin. Forget about them. Remember they are insecure with themselves so they have to put down others to make themselves feel good.

Support here is great. Have you checked at the place where you were treated about support groups.

Although I plan on reconstruction it might not happen for me. Because of my body type/size implants are the only way to go. It looks like I'm going to have radiation. There might be too much damage to proceed. Getting it from my back might not be a real option for me either. I am prepared to go flat is I must.

Anonymous

Hi ladies,

Sorry I have not been posting much lately. It's summer here in BC and we are out in the sun whenever we can. 

I know there are mean people out there, it's just learning how to respond to insensitive people about a sensitive subject. I guess that is something that we learn in time. I have not shared my dx with many people because the reaction has been so varied.

 I am going on two years now (Sept 9) since my dbl mastectomy. I thought I would share something that my naturopath told me. I was asking about implants and the impact on the immune system - the naturopath said it is a foreign object and the immune system sees implants as something that is not supposed to be there. He recommended no implants, but said, of course, it depends upon how much stress having prosthetics is causing versus making my immune system work harder with implants. I don't know at this point what I will do. Vanity versus health!

I have silicone prosthetics presently - just bought a set that fits. That is so important...my previous prosthetic boobs were too big for me and made my shoulders ache. The new ones are smaller (34B) and feel almost like my natural boobs. There is a gel-mesh pad that velcros onto the back of the prosthetic (made by Ameona) and that keeps you from sweating from the silicone. The new bras have mesh rather than solid nylon material against the skin and breathe way better than the old bra I had.

The hosp. where I live, in this remote part of British Columbia, Canada, is I guess what you'd call a satellite hosp. meaning it does basic procedures but anything critical goes to the big cities and I live too far to travel back&forth to the big cities. There are 3 women in town who are the breast cancer support. They are nice enough, but none have had mastectomies and none have done chemo so they don't know how to relate to me. I didn't have treatment in this town but chose to go a few hours south where the doctors are better. So I don't have local support.

sandiddstn, I would go with your doctors advice about waiting to do recon. That is pretty major surgery. I think the docs are thinking it would be better to let your immune system/body heal from the lastest assault!  I can't have recon, as I have had ovarian surgery that left a big vertical scar. Docs won't make another incision across a previous one.

Have you asked your doc about taking COQ10 while you're doing Adriamyacin?  There are a lot of supplements that can enhance the chemo and protect the body at the same time. I have also read about COQ10 supplements protecting the heart while doing Adriamyacin, altho I did not have that drug.

lago, thanks for posting. It is hard for me to go flat as I did have cleavage. Everyone has to do what is right for them. Sometimes I second guess my decision to do the dbl mast but then, am glad I don't have to do mammos every year. I admire your decision to 'go flat' if you must. When I take my prosthetics off, it seems to make my posture weird tho...I stand with my tummy out and it makes me look fat. THe woman who fits prosthetics said they keep your posture normal so you don't slump.  Maybe that is true?  I don't know. I have lost my point of reference (boobs!) so the prosthetics help me, but that may not be everyone's experience.  

lago hang in there and just get thru your treatments...try to not worry about recon right now.

Thanks for your advice and words of encouragement!  I appreciate it very much.

Takin' it day by day...

tucker 

Anonymous

I think I can help you Tucker.  I have a bra that is beautiful and does not require inserts.  Please check out the website at www.mysuperbra.com and feel free to call me with any questions.

973-960-5090

Kim