need more support for my decision

Michele,

I am very happy with my new body, and I did NOT have reconstruction.  Sure, I'd be glad not to have had a bilateral mastectomy, if I hadn't had cancer.  And I did try wearing prostheses for about a year, but for most of the past 31/2 years, I've been flat as can be, and I like that better than any of the alternatives.  But I'm the one who made these decisions, and I'm the only one who could move me to a better place.  I cried a LOT for the first 3 months.  Then I cried occasionally.  I can't remember when the last time was that I cried about being boobless.  But all this is about me.  It is not about you.  

The decisions I made might or might not be right for you.  The decisions of women who chose recon might or might not be right for you.  What I resent for myself and others is all the people (doctors, friends, family, even strangers) who have not had to make those decisions for themselves and who think THEY know what YOU need.  They don't.  If you are not ready to make a decision, then you shouldn't be pressured to make it.  That's what I think, but even that doesn't matter.  Being depressed about having cancer and the results of treatment is normal.  It takes us a long time to come to peace with ourselves.  Lisa found her peace with recon.  I found mine going "flat". Others found theirs with prostheses. You will make the best decision for you after you find some peace for yourself.  Meanwhile, don't let anyone, including me, tell you what to do!  You have a good head on your shoulders, and I trust you to use it for your own best interests.

I join Lisa in wishing you all the best in making your decisions when you are ready.

Dawn 

Hi Michele, 

It is a very difficult decision, but it has to be YOUR decision.  I think waiting until you can feel comfortable with your choice makes all the sense in the world.

If you have not already checked out the Breast Free site, please do.  It was created by one of our BC.org members, "Erica"  (Barbara) and has become a wonderful resource for women in exactly your position.  I think you will find it very helpful.

http://breastfree.org/

I opted for bilateral mastectomy without reconstruction at the age of 52 and have not regretted it for a minute.

Best Wishes for you.  

Linda

I opted out of recon also--but I have to say, i feel like i was lucky that I ended up doing chemo before surgery because I got SO MUCH pressure to do recon--if I had gone right into surgery I would have just done it. After 5 months of chemo I had time to think about it and realize that it was not for me. No regrets.

I've been hearing about fat transplants, where fat is liposuctioned with needles from your fattest area—belly or buttocks or thighs—and injected into your chest. There's no cutting involved, although it's not painless, so muscles stay intact. A friend had it done, and she's delighted with her result. It's not yet widely done, but apparently Miami and NYU are two places where surgeons are good at this. Might be worth looking into.

Okay I can't say that I am happy with my decision (as you know it was made by my body) BUT it's not so bad.  Well besides my body having fluid issues it honestly isn't the end of the world in my eyes.  You will do great (and I am not just blowing smoke)!  I would do the skin sparing if you think that reconstruction may ever be in your future (so there is some skin to work with) and then if you decide otherwise you can always remove the extra skin.  It is all you decision there is no rush and whatever chose you make it IS THE RIGHT ONE (do you hear me yelling...lol....). 

Michele,

While my3girls is correct that a skin sparing mastectomy can make reconstruction a little easier down the road, on the other hand a chest with skin folds doesn't look nearly as nice as a flat chest and a breast form may not be as comfortable. Also, if I'm correct, unless you do reconstruction fairly quickly (within a year), I believe the extra skin may lose its elasticity and not be usable for recon (I'm not sure I'm correct about this; maybe someone else will know for sure).

Even though I had not ruled out recon down the road, I chose to do a simple bilateral mastectomy without skin sparing. I can still do recon if I ever choose to. It's been over three years and so far, the further out I get, the less interested I am. I think that's partly because I've gotten used to the new me and after all this time am confident that I look fine. 

Nagem and Celtic-Spirit,

I did some searching online and found the Miami plastic surgeon who has pioneered the fat transfer technique. Here's a link to the website: http://www.miamibreastcenter.com/breast-reconstruction-miami.html. It looks interesting, but there are some issues that would concern me if I were considering this. First, I'm not sure if radiated skin could stretch appropriately using the suction device and I've had radiation to one side. Second, since even the best mastectomy surgery leaves a little bit of breast tissue behind, I would worry that the suction would encourage growth of more breast tissue (if you read the description of breast enhancement using this suction device, the suction apparently stimulates breast tissue to grow). That would be a major no-no for me. Another concern would be wearing the bulky suction contraption for three months or more. I hate anything but the lightest bra. I can't imagine wearing that thing for so long. Also, when I look at the before and after pictures on the website, I'm not sure I love the result. I don't think I'd look as good in clothes as I look now with my breast forms. Finally, I'm so thin I probably don't have enough fat to make more than an AA cup on both sides (despite being thin, I do have a little bit of tummy fat). 

But I agree with Celtic-Spirit that eventually more appealing forms of recon may be available, including perhaps this one, once safety is better established and the technique is better refined. 

Nagem, have you seen your friend's results?

Michelle, meanwhile I'm very happy living breast-free. I have no pain or tightness or activity limitations. Exercising at home with no breast forms feels fantastic and I have unweighted forms that I use for hiking and other exercise when I'm not at home. When I'm not exercising, I use lightweight silicone forms and find them very comfortable. I was just talking with my DH about how odd it is that when I have my forms on I feel as if I have real breasts--i.e. I feel as "sexy" as I ever did. I think it's the brain sex thing or something. And even when I'm at home with no forms, I really do feel as feminine as ever. My DH seems to feel that way about me, so that helps. So much of sexiness is attitude . . .

Barbara

there is a little section in Love's book about this. Some women are very happy. You could do ballet!

I think you have made a great decision for you Michele   Honestly I think you are going to do great and be fine.  ((Bighugs)) 

I strongly wanted recon, and I persisted and I got it...and, it was the right choice for me.

HOWEVER, I spent a couple of years boobless.

I now have 2 flap reconstructions.  And, I can tell you that there is little difference between "strap on" boobies and my flaps.

The key difference is that I don't have to strap them on.  Just call me, "Mrs. Doubtfire." (total lack of feeling...nerves are cut during mastectomy).

In other words, I have some good place holders that keep my shirt up...and I'm "happy" with them, but they are nothing like real boobies.  They look like boobies, but with a bra on, there's little external difference (prosthetics vs recon.)

As far as naked goes, it's less traumatic...but, the scars are reminders.  Anybody who sees me naked knows something bad happened here.  Skin-sparing tends to produce better outcomes.  Time fades scars, but they are still prominent.  Naked, I feel like I have to "explain" the scars.

It's hot as hades in South Mississippi and it is convenient having reconstructions...in the event that I'm going "commando"...I've gotten used to my flaps and in clothing, I am less self-conscious about them.

It's kind of like having false teeth.  I know they're not "real"...the big difference to me...recon versus no recon is that I don't have to strap on my fake boobs...when I wake up in the morning, they're already on.

I have formed an impression that immediate recon is less traumatic...but it will still be traumatic, because this will be a drastic body change.  Sort of like having a surrogate stuffed animal...it helps, but it isn't what you're used to. 

tl

P.S.  I was age 40 at diagnosis...45 grand years old now! 

Hi everyone,

I've been reading about "Michele" and her trying to decide about reconst.  That's where I am right now. It's a hard place to be. I have a single MX scheduled for Nov.18 (my decision).

I had a lumpectomy about 5 weeks ago and it has taken about this long for me to make a decision to have a MX as opposed to rad. and Tamox.  I am also scheduled for TE at the time of MX, but am really trying to decide if I want that or not. What scares me about TE is the safety of the implants--having something foreign in my body, etc. I am SO tired of having to make hard decisions with this whole experience! (I was diagnosed in August '09.)

If I don't have the reconst., I could always have it done later, right? Who knows ---I may decide to never have it done like some of you I've read about. So should I have the skin-sparing MX just in case?  Tell me what the pros and cons are about having TE at surgery and waiting and having reconst. later (if at all). I'm just so tired of thinking....

Sorry I've written a lot...I just need guidance and advice. I realize that it is MY decision (all the dr. keep telling me that), so I KNOW that. But I love hearing from people who have already expereicned what's ahead of me.

Is it really hard after the surgery with no breast? Would it be better to have "a little something there" when I wake up?

 Thanks for your input. I need it.

Debbie (PS, I'm 58 and active.) 

I am 56, just had bil-mx but will not have recon as I just don't want the additional surgeries. I am healing daily and I will get "store bought ones" and make adjustments. Michelle, you have the right to your own decision no matter what decision you make. You will come to the best decision and if you need a little time and "the beast BC" allows that time- take it and you will come out OK.

Also to all of the ladies that opted for RECON - kudos to your strenght I respect what is right for each of you.

Michele, may you heal quickly.

Leah

Hi Michele,

I'm glad that's behind you. And really glad you feel good about your choice.

I hope you have a speedy recovery. Please keep us posted.