Thursday, December 12, 2013

Decision #1

Recently I have been ruminating, agonizing, and tossing and turning over a few decisions I have on my plate.  First up - reconstruction.

It has been two years since my bilateral mastectomy.  Physically my body has healed. My scars are about 80% faded.  I have full range of movement and I have regained my muscular strength.  Emotionally I have steeled myself to the possibility of cancer’s recurrence and I get past the  daily reality of my mutilated body reflected in the mirror.

What I can’t get past is the problem with clothing.  I’ve had to toss almost all my cute summer, clingy t-shirts and now wear mostly loose shirts with some kind of design across the chest.  But I can’t wear white or light colors and nothing at all shear.  I can’t find an appropriate shirt to wear with suits.  All the turtleneck shirts and sweaters are gone.  Literally 75% of my work wardrobe has been removed.  I’ve cut the cups out of bathing suits which now just droop.  And finding anything dressy for weddings and such has been down right depressing.

I originally bought a mastectomy bra with inserts but they wound up on the shelf because having these rubbery things hanging off my chest just felt too weird and were uncomfortably hot and sweaty when the weather got warm.  And I can’t do the boobs one day, none the next thing.  

And so I made an appointment to talk to a plastic surgeon about reconstruction.   This is what I found out - it would require two surgeries, one to place expanders under the skin.  Then every couple of weeks I would go and have saline solution added to the expanders until my skin stretched to the size I would like to be.  (small)   The second surgery would be to remove the expanders and replace them with silicon implants.  

The negatives - Two surgeries.  Both under general anesthesia which I have a very hard time with.   Two new recuperations totally 5-6 months.  Scars re-opened.   Not knowing what they will feel like.

The positives - No more clothing issues.  That the scar tissue which has adhered to the muscle underneath, will be separated, therefore the constant feeling that I have duct tape on my chest, pulling every time I move, will be eliminated.   And my insurance will cover the whole thing.  

Strangely, I don’t know of any other women who have done this.  One woman I work with recently had one breast removed and will do reconstruction to match, but she is still in the chemo stage, so not much of a resource.

My sister’s opinion - “Do it.  Then you won’t have to feel bad about yourself anymore”

Well, I really don’t feel bad about myself.  I actually like being flat for a lot of reasons, although I don’t like being lumpy.   I don’t love the way my body looks now but it has benefits.  And if you look at pictures of reconstruction, it is basically two artificial mounds, no nipples, with a scar running across each mound.   I don’t think it will solve the ‘mutilated’ feeling.

Peachie’s opinion - “Do it.   I’ve seen how difficult to get dressed.  How hard it is for you to go clothes shopping and how long it took for you to find something to wear for a wedding.  Just think how you will feel  when it’s MY wedding.  Have the surgery now,   recoop for 6 months, and then never have to worry about it again.”

Martha is against it - mainly because she is very leery about putting something foreign in my body, especially something that has been known to cause women problems in the past.  And she is concerned that the implants might obscure the detection of a recurrence of cancer, something I know I have a high probability of.

And so I continue to sit on the fence.  I have made another appointment with the doctor so Martha can go and ask her questions, which amazingly she has agreed to go.   I just wish I could preview what they would feel like. I wish I knew women who have done it, or not, how they made their decisions, and whether they are happy with their decision now.  

So any opinions out there?  Do you know anyone who had reconstruction?  Did they love it, or hate it?  Would you do it?   Anything info that would help nudge me would be appreciated.  I really need to make a decision soon if I’m going to do it so it will be complete by summer.


  1. I think that is a highly personal decision, but for me? I would definitely do it. I enjoy having breasts and showing off some cleavage. Vanity, maybe, but they have always been a part of my body image. If I didn't have a choice, I suppose I would get used to it. But having a choice? I would get bigger, better boobs.

    1. I'm sure you would : ) If I decide on the surgery, I am going small - just enough to push out to hollows and smooth it all out. I never, ever want to have to wear a bra again.

  2. I have a friend, someone I've known most of my life, we met when I was in junior high and she is maybe 15 years older than me and had had a bone marrow transplant right before we met. In the ensuing years, she had reconstruction on the side that was removed and then another mastectomy to remove the other side and another reconstruction. Her procedure involved moving muscle from her abdomen though and I'm not sure about this procedure with the saline. I do know it made a difference in how she felt about her body. She had a nipple tatttooed on and there was some attempt to create a nipple effect, but it didn't last and wasn't worth the effort, IMO. I think about how integral my breasts are to my sexuality and think for that reason alone, I would consider reconstruction (even though I know there are varying degrees of sensation and feeling and none is guaranteed).

    This is such a highly personal decision, and the risk of anesthesia is not to be taken lightly. I think you know what you want to do - so decide and then start putting things in motion to do so. Whatever you decide, it will be the right decision for right now and if you want to change your mind later, then that's an option.

    1. If I could get back the erogenous feeling, I would do this in a heartbeat. In fact, I might have a few extra breasts added just for fun : ) But unfortunately, I have lost that forever.

      Thank you for sharing your friend's experience. Sounds like she's been to hell and back with this.

  3. I asked a woman who had reconstruction about 5 years ago. Her expanders were placed at the time of her mastectomy so it was only one more surgery after that. She said that it took a few months to not notice the implants and she is very happy with them and would do it again. Hope that helps.

    1. Thanks for sharing a positive story. It's good to know that some women have had good experiences with this.

  4. I'm going to be the voice of dissent here.
    Ok, I have just written and deleted a bunch of sentences... because I don't want to sound judgmental. It's your decision, of course, but I would lean toward accepting your new shape as is and being grateful for health. Shoot. That even sounds judgmental and I absolutely do NOT mean it that way! Who am I to say what you should do -- although, you did ask...

    You don't need boobs to complete you, 8. You are wonderful and perfect just as you are. I am going to ask one of my mammographer friends to recommend a website for you to get your questions answered by women who have experienced reconstruction. I'll email you.

    But, for me? I would love to be boob-free.

    1. Not judgmental at all. And not only did I ask, you know how much I value your opinion. I count on you for honesty.

      I don't think I'm considering this to complete me . . . I don't think. I have been like this for 2 years and have gotten quite used to the new topography. But when it is an issue, it is a big issue. I'm just not sure it's ever big enough to warrant two surgeries and the possibility of future problems.

      I would love that website, thanks. I have found a lot of info and pictures but not the kind of visceral opinions I am looking for.

      As always, thank you for your honesty and advice.

  5. I'm generally against surgery that isn't life saving. And such, don't think I could (or would). But, I also haven't had such a dilemma placed before me. Do your research. Hopefully you can get to talk with women from various perspectives. And hopefully, the information received will help you make the decision that is best for you. I shall be thinking of you (even more). :-)

    1. Thank you for your comment and for your (always) king thoughts.

  6. My opinion has changed because of my issues around my teeth. Before that, I would never have gotten anything I thought of as electional. Now, I know I would do it in a minute, if I had the wherewithal to do it.

    Surgery is super serious. Always. A very personal choice, as you know.

    And, like you, if I were going to do boobs, I'd do small ones. And I'd have nipples tat'd on, because I like the way they look. Even if I had to get them re-tattooed every so often.

    Someone I used to know got implants because she felt her breasts were saggy after kids and she loves them. She did have one spring a leak at one point, and that meant another surgery to repair it. That's the only complaint I've ever heard from her. I don't know how common that is, though. It's a question to ask: what happens if that happens and what you have to do and how quickly. (Although I'm guessing quickly.)

    I have a thought on a third option. Is there a way for them to smooth out the lumps? Would it be different if you didn't feel so lumpy? And if they dealt with the scar tissue? Is it that piece that's hard or the clothing part that's hard?

    Another question I have regarding clothing ... would you be willing to wear bras in public or are you through with them? I keep thinking that we must have the technology to pad a bra without resorting to plastic rubbery implants. And if we don't, I can imagine designing one .... I know the so called "miracle bras" had a somewhat realistic feeling lining in them that moved somewhat similarly to breast tissue and would up you a bra size. It's a thought.

    Personally, I would get them because I have found out that I need teeth to feel like myself. I walk around feeling like a total stranger when I catch my reflection. I hate it. In some ways this decision is based about 95% on cosmetics ... even though it will mean I am able to do things I cannot right now. I just don't feel like myself and I have tried to adjust and I am not. I know it's risky to go under anesthesia. But I hate living like this. It's so blessed uncomfortable, too. Not painful ... just constant discomfort. I would like that to go away too.

    So my answer is really coloured by that. Which may be good and may be bad. I'm mostly warning you because that's an influence for me.

    The last thing, for me, is how big a deal is this for Martha? Even though you have a very long-term, very successful relationship and I've, well, not had that, I keep wondering if I were Martha how I would feel if you did it when I was set against it. I'm also wondering if she's afraid for you. I suppose I would want to talk in depth about it more. Really understand what her reasons are and how she's going to react if you do it anyway.

    It's your body. And I'm not saying it isn't. But it's also a big decision.

    Well, obviously you know that.

    1. The surgeon did mention something about contouring. I need to ask her some follow-up questions on that.

      As we have talked about, I think there are great similarities between what you and I are going through. My situation is much easier to camouflage and therefore I don't have near as much of the physical or public reaction as you do. But I think the emotional side is very similar and I really appreciate your thoughtful comments.

      I did try the Victoria Secret solution but, I think much like you and the dentures, if it is not an actual part of your body, it feels foreign and uncomfortable. And this on/off thing is too weird for me.I also tried bandos which gave me just a little mound and were comfortable. But, unfortunately, without anything to hold them up, they would up slip down around my middle.

      I thought I was all set to schedule the surgery until Martha voiced her opinion. Although we are very independent within our relationship, you don't maintain a long term relationship without respecting the feelings and fears of your partner. And her feelings and fears of cancer run very deep. I don't know if the doctor will be able to adequately address her questions. And so you have hit one of the nails on the head - her feelings will weigh very heavily in the final decision.

  7. What a tough decision to make! I think you need to do what you think is best. I know that sounds whimpy - but until you walk that mile - you don't know how you would feel. I can see pros and cons of doing it vs. not doing it... So, that didn't help you a bit... Whatever decision you make it will be what is best for you - and you will be just as loved and respected either way...