Unhappy where I am, but too scared to do anything about it.
Comments
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This July will be three years from my bilateral mast. with no recon. I wish I could say that I am happy with no reconstruction, but the truth is that I am just too scared to go ahead with any. Not only does the risk of surgery scare me, but I have young kids that I don't care to miss out on any more of their life. It was bad enough altering their summer three years ago without doing it to them again.
I will admit that some days I don't mind being flat. It is comfortable when I am in the comfort of my own home. But...I never go out in public without something on and I don't even let anyone but my mom and hubby and kids see me without anything on. Right now my kids are too young to notice the difference, but I don't look forward to the day I have to explain why some days mommy is flat and others she isn't.
I really miss my breats during those "intimate" moments, but I don't really know if that in itself is enough reason to go through any more surgery. My hubby supports any decision I would make, but whenever I bring up the possibility of recon. he right away assumes I should get implants. Now don't get me wrong....implants might be ok for many women, but I just feel like they would not be comfortable for me. He just doesn't understand what is all involved with implants and thinks it would be easy to do. I have asked him to read a little about it (since he spends tons of time on the computer looking up sports etc), but he said it didn't matter since I don't want implants anyway. I would just like him to read about it and understand why I am making that decision. It frustrates me that he won't even look into it. If I did any recon, I would prefer the DIEP, but that seems like too big of a surgery for me to even think about.
How do any of you get past all this and feel comfortable in your own body. Like I said, I'm not really happy with how I am now, but I am way too scared to do anything about it.
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Hi samon!
I wish I had some words of wisdom about all of this. I, too, am not happy with my body anymore and am also just too darn afraid of surgery and too tired to do anything about it. I am sick of wearing a shirt during intimacy. As strange as this is going to sound, I have never let my husband see my chest. I had my bilateral almost 2 years ago, June 28, 2006, and have still not shown him anything. I have accepted the fact that I had breast cancer (I think), but I still have not accepted this new body of mine. The only time I go flat is just before I jump into bed to sleep (in a big flowing nightgown that covers my flatness).
My GYN is pushing for me to have a hysterectomy because I have uterine thickening, etc., and I have just stopped going (for now) so I don't have to think about it anymore. I have become very good at sticking my head in the sand. But, when I look at my body, it just brings it all home again.
Hopefully, someone will be by that will be of more help to you. I just wanted you to know that you are not alone in these feelings.
Cheryl
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Sorry.....no words of wisdom from me, either.
I have exactly the same feelings as both of you - not really happy with the way I am (unilateral mastectomy end of 2001), but so scared of any reconstruction.
Although my b/f is accepting of the situation,(he knew me before the bc),I also always wear something to cover my top half when we are intimate. Only once did he see the mast site, when we had a shower together and he lovingly soaped me all over.That really meant a lot to me, though we have never referred to it and I am still covering up.
I am really unhappy that I can't wear certain clothes and that I feel I can't be totally naked in bed.I am worried what another man might think in the future( this relationship is not good at the moment),and want to feel 'whole' again.
But the alternatives are SCARY! Implants after rads have a high failure rate ( and seem not to look or feel very natural);and a DIEP is such a big surgery with a very long recovery time, and another massive scar.....and NO guarantees!
I am a single parent with a son who has special needs, so there are many implications and complications around this too.
I don't know what the answer is; I also only replied because this topic hit a nerve and I wanted to tell you that I feel the same way too.
Hugs,
Sam
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This is such a difficult question. We are all so different. Samon, Cheryl, and Sam, I shared your fear of reconstruction surgery but, unlike you, have been happy with my choice not to reconstruct. While I believe that the most important thing is that I feel comfortable with my choice, there's no denying that my husband's reaction has been incredibly important to me. He brought a complicated history to the situation.
My husband's mother had a mastectomy when she was 31 (she later had a second mastectomy at 46 and is now 82 years old; reconstruction wasn't an option for her, first because it wasn't available so long ago, then later because of her severe lymphedema). My husband's father did not handle the situation well and was profoundly affected by what he thought of as her disfigurement. They had a loving relationship but my m-i-l has told me that their intimate life was a problem.
So, naturally, I had concerns that my husband would react the same way as his father had. But he surprised and moved me by his reaction--he preferred that I not have reconstruction. He actually saw my chest the very first day, before I did, when the resident came in to check the incision and removed the gauze covering unexpectedly. It never really bothered him, or me. While I realize a totally flat chest isn't "normal," I myself find it fine-looking, perhaps because I'm slim and still appear in proportion. I often am naked in front of my husband and he seems to still find me attractive. After an initial shyness on my part, during which I wore sexy bras with breast forms during intimate moments, I now am totally comfortable wearing nothing and my husband enjoys touching me everywhere, including my chest. At first I didn't believe it, but he promises me it's true. I even find that I get aroused when touched on the part of my chest where my nipple used to be--go figure! I think the brain has a lot to do with the pleasure we feel and I guess my brain expects to feel good when my body is touched there.
BUT, my point isn't to say that you should immediately bare your chests to your husbands--from my own mother-in-law's experience, I can see that every man reacts differently and every relationship is different. I guess it's best to go with your gut instincts about what will work in your particular relationship.
MAMHOP, I'm glad the reconstruction worked out well for you--I recall how nervous you were and, as you may know, I was especially interested in your outcome, since your PS was the same one I consulted when considering plastic surgery. BUT, for some of us, NOT having reconstruction doesn't mean that we feel worse about ourselves. I get up everyday, get dressed, wear a normal bra with my breast forms (don't usually use a mastectomy bra), and NO ONE would ever know I had a bilateral mastectomy. It took some work on my part to find breast forms and bras that were totally comfortable and natural-looking, but now that I have, I'm less and less interested in ever having reconstruction.
Samon, I wish I had some words of wisdom about how to get comfortable in your own body. You've certainly given non-recon a try, so maybe at this point it's worth consulting with a PS to see what your options are. As far as your kids' reactions to your some days being flat and others not, I was worried about my sons' reactions, too--they were older, 24 and 21, when I had the mastectomies. I needn't have been concerned. Like most kids, what they cared about was having their mother alive. When they visit, they know I may be flat in the morning when I first get up--it doesn't seem to bother them a bit. So, I wouldn't make my decision based on concerns about your kids--what matters is how you feel about yourself, and I do believe your husband's reactions to factor into that.
Barbara
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I've been hesitating about adding my 2 cents to this conversation because you said you didn't feel that implants were right for you and I don't want seem like I'm trying to talk you into or out of anything...but I'm doing to go ahead and let you know about my experience.
I had also rejected implants as an option early on because I was concerned they wouldn't feel or look natural and I didn't want artificial 'stuff' in my body. But after researching DIEP and consulting with an experienced DIEP surgeon, I was in the same position as you - I was afraid of such a large surgery, plus for me the resulting breast would have been quite small. So I went back and did some more research on implants and also had some medical consultations (both with the first DIEP doctor and another doctor) about the implant surgery itself, effect of rads, potential problems, etc. The end result is that, even though I had originally rejected implants, after three months of extensive research I decided to go with the implants, again mostly because I just could not bring myself to do the DIEP surgery. I sigured (and the doctors agreed) that if the implants really were a problem, they could be taken out and then I could go with DIEP or just not have any reconstruction.
The outcome was that the implant recon. was much easier than I had anticipated and worked well despite the rads. I think one reason for this is that I had a very experienced and good p.s. and that I also insisted on a pre-surgery anesthesia consult, which helped to avoid previous problems I had had post-surgery. I recovered very quickly with almost no nausea and very little pain. The surgeon used Alloderm and also I did go down slightly on the breast size, which meant that he was able to put an implant in immediately and avoid the expander process. (This may not be possible with radiated skin but it can't hurt to ask). I was able to avoid the long DIEP recovery and am very happy with the outcome. My only regret about not doing DIEP is that I still have a flabby stomach but hey, you can't have everything!
I'm really not trying to convince you to have implants, but I am saying you might want to take another look and speak with an experienced implant p.s., if you haven't already. I apologize if you've already done this and again I'm not trying to change your mind, just to give you my experience which was that even though I had rejected that option at first, as I continued to do research I did change my mind and it worked out well. DIEP is a great option but I also just couldn't get past the extensive surgery, mostly because I had had such bad surgery experiences in the past. It's also possibly that because of the advances in anesthesia and pain management in the last decade, DIEP recovery would have been fine also but I just couldn't get over that hurdle.
Anyway best of luck - it is a difficult decision but I think with time and research the right course of action for you will present itself. And again, I apologize if this post seems obnoxious or that I'm brushing off what you said...I just did want you do know my experience in the hopes that it might be helpful to you - if it's not, just ignore this!
All the best,
Kerry
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I've had it both ways and there are pros and cons to both.
I had bilateral mast in June of 06 and then bilat I-GAP in March of 07.
You are right, major surgery using your own tissue is nothing to be taken lightly. The surgery itself and long anesthesia is a risk and mine was over 7hrs. Then there is the trauma to the area you are "harvesting" the tissue from, as well as reopening your mast scar(s). Then of course a relatively long recovery and possible complications.
I was lucky, in that I didn't have any complcations. BUT, I did have drains in both hips for 4 weeks. - That was very tedious and got to be depressing, wondering if the drains would ever come out. Also, I will say that even though I was in good shape physically coming in, the surgery is very draining. I was extremely weak, dizzy and no appetite, nausea for 3-4 wks.
BUT, having said all that, I like to think of flap surgery as very intense and difficult but in the grand scheme of things, once it's over, it's over and you are done with a new set of relatively real looking "fake" boobs. My total recovery took about 4 weeks and then I was feeling mostly back to normal.
Also, there are normally 3 stages to flap surgery:
-Initial:When they just get the breast tissue in place.
-Revisions: where they correct any problems with the area they took tissue from, lift or otherwise shape the breasts and some surgeons throw in some lip-suction.
-Nipples.
I opted out of revisons and nipples. - That way I only had to endure one big surgery and I am perfectly happy with my "breasts" even if I don't have nipples.
Who sees you anyway but your husband or significant other? I and my husband are perfectly happy with just stage 1. As for the gluteal area with the I -GAP, there was no way I was going to let them re-open those stiches!! - Since they took tissue fron the lower-saddle bag area, there is no real change in shape to the gluteal area. I do have 2 huge scars running diagonally at the leg/panty line, but again, who is really going to see that?Anyway, It was the right decison for me, but I can see it both ways.
Follow your heart and gut instinct. Don't rush into it because it is a big decision.
Julie
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Samon,
I completely understand how you feel. While many of us have come to accept living without breasts I'm sure most of us would do a lot to have our old breasts back. At the same time, fear is an important mechanism that keeps us out of trouble and shouldn't be viewed as a weakness.
In many ways its easier for me to accept being boobless because I've been through a failed reconstruction. After a year of debilitation and seven surgeries, I know I gave it my best shot. To have a healed chest, even without a breast, is far better than the open wound, discomfort and hideous foob I had been dealing with.
Perhaps when your children are older you will feel comfortable about having DIEP surgery. Maybe by that time they will figure out a better way to perform the surgery. A lot has changed in reconstructive surgery in a very short time. Certainly the options won't get any worse if you wait.
Hugs, Susan
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Samon,
Forgot to mention in my last post. My kids are 10 and 14 and they see my missing boob often. I never hid my diagnoses from them nor have I ever tried to hide my scar. They were 2 and 6 when I was originally diagnosed. They seem to be totally fine with the whole thing. Kids take their clues from their parents. If you are uncomfortable, they will feel uncomfortable.
More hugs, Susan
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Totally understand your feelings and fears. Many women who opt not for immediate reconstruction can relate to your feelings. May I say I was completely fine with my body post mastectomy...of course not doing back flips, but actually I had a choice between lumpectomy and mastectomy and I chose mastectomy. While I knew about recon options at the time of my decision, I opted to deal with the cancer first (meaning mastectomy and chemo) and later revisit the whole reconstruction issue. I had a prosthesis and I was glad noone could really tell my real breast from my breast form....I felt normal....however....I guess for me....I felt I needed to wear a bra and form for symmetry, it bothered me to be one sided, and I also have young children. They were totally OK with my physical appearance, glad I was in good health, but it was ME. My husband saw my mast. incision area immediately after surgery, he was fully supportive. I looked into all reconstruction options and the best choice for me was expanders and implants. I now have expanders and everything is great. I actually had a prophylactic mastectomy with bilat recon. and wow, I feel like a new person and my recon is not even fully done. I have not had any problems, minimal 'pain' (more like tightness), everything has gone so well and I am so happy with the results so far....and cannot believe how GOOD I feel now that I have what they call 'foobs'. I did not think it affected me that much, but I guess deep down it did. If everything with the recon failed tomorrow, I could happily live with bilat mast and breast forms.....but for me....I am happy to have the recon option. I am a young active mom and woman and wife, and for so many reasons I know the reconstruction is going to positively affect my life and lifestyle. I too really wanted to use my own tissue, and was not so thrilled with the implant option, but that was my best choice and I have had great results. Nothing can replace a real breast, and I understood that....but to an amazing degree I feel whole again and free.....did not realize how much it must have unknowingly affected me until after I started the whole recon process. I too would recommend at least consulting with some of the top PS docs who regularly perform breast reconstruction surgery of many types. A consult is not a commitment, but knowledge and info. Best of luck!
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Samon - it sounds like you're having kind of a down day.
I truely believe that gals do what's most important to them, so if your hesitation to proceed with reconstruction keeps you from making the appointment, then I think that's a sign that reconstruction isn't that important to you.
Everybody has days when they're unhappy with whatever they've chosen.
Oh I know, there are posters who LOVE their implants/DIEP, and have loved them since they woke up from surgery. There are also people who eat Ben & Jerry's and never put on a pound. I think most gals have their up and down days.
With summer coming on the whole breast thing comes a bit more real. I get tired of the heavy bra that covers the dent in my reconstruction. I see those little shelf-bra tops and wish I could just throw one on and look right.
But, for the most part my dissatisfaction passes. Reconstruction is a long haul. All the waiting and the processing by the medical system isn't something I look forward to dealing with.
Maybe you just need to treat yourself to something special today. When/if the time comes to make the appointment I'm sure you will.
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I have those bad days too (though, in my case, usually more about the uncertainty of my survival than about my body image), and I find my daily yoga really helpful. It reminds you of your strength and beauty--no matter what scars you bear on the surface--while it increases endurance, flexibility and range of motion. When you do it, it feels as if you are working through your emotional problems physically. You might want to give it a try? (Also helpful in other domains, like working through parenting issues, job difficulties, whatever ails you!) Best wishes to you ... Nagem
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It took me 3 years to decide to have implants because i was just so tired of surgeries, chemo, etc. but I have to say the expanders and exchange surgery was not bad at all and it is so much more comfortable in clothes, they feel natural. You have to do what makes you feel good and be happy.
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Thanks for all your wonderful replies. It is true that some days are down days and others are ok. Going into summer is always tough because then the swimming suit and tank top issues arise. In winter I can just wear something baggy and I'm totally comfortable.
Part of the problem is that I'm just not ready (and I may never be ready) to do an type of reconstruction. I had just realized that I am almost three years out and my insurance company had told me that I had five years to decide on reconstruction for them to pay for it. I was thinking that the time is coming near that I have to make a decision and I still don't feel ready to do that. I wish there was no time limit on this and I don't really think it's fair that they have a time limit. I tried looking up the laws about this but could find nothing about insurance companies posing a limit on when they would pay for surgery. Most of what I found out stated that they are required to pay (which this company will pay as long as it's in five years). I wish I could find out somewhere if that is correct that they can put the time limit on it. I would feel much better knowing that I can change my mind later on down the road.
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samon - I feel the exact same way! Some days I'm okay with it...somedays I just hate it. Like today...the humidity is 78% I have on a summer shirt, but the sweat and heat from wearing a bra with prophs is so hot and sticky. I see all these girls wearing cute shirts with cleavage and I am so envious at times. When I was first dx'd...I had a Mast and at the same time, had an expander put in. It was so frickin painful, I could not stand the pain. The expander felt like it was pressing against my rib cage and I had not even yet had an expansion injection! Two weeks later, when I found out I needed an Ax Node dissection, I asked the PS to join me in the operating room and remove the expander. Since then...I am PETRIFIED at the thought of reconstruction. But on the other hand...most of the time I hate being flat...I always have to wear something under shirts. Unlike you...I don't have kids to deal with. But I can certainly understand your fears and your concerns. Alot of girls here have had great success with reconstruction. I wish you the best...whatever you decide. It's tough though....I mull it over quite often too! My dh is awesome...he always reminds me he is a "butt man" not a "boob man"....
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I am having second thoughts about reonconstruction myself. I actually began the process and I am on step away from my implants (I have the expanders in now). But I'm getting cold feet about having implants I hear so much negative stuff about them. Has anyone on this board ever changed their mind in the middle of the reconstruction process. I am worried now that if I don't get the implants, what happens to the skin that has been streched. I thought I did my research before my bilateral mastectomy, but I guess it was not enough. I was so worried about the mastectomy, that I didn't research the reconstruction part enough.
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Hey Samon,
Here's another 2 cents...I had a mast on one breast with recon (silicone implant) a year ago and I can't wait to get rid of it! I had originally decided to not get recon but listened to friends that had been through bc surgery and almost all of them said I'd regret NOT having anything done. I wish now I'd listened to my gut and not be facing another surgery to get this thing out! I've never adjusted to having it.
The thing is just think about what will work best for you. It's a tough decision and getting lots of opinions may help but at the end of the day, you have to be happy with whatever decision you make. There were days when I'd change my mind about 100 times...one minute no recon, the next recon. It just got so tiresome trying to decide. I kept playing the "what if game"...What if I look funny with just one boob? What if I look funny with an implant? What if people stare at me? What if hubby doesn't desire me anymore? What if made me nuts! I went ahead with the recon and once I made a decision I was fine...until now. I'm playing the "what if" game again myself, asking the same questions and it does suck!
Everyone has their own unique perspective and things that work for some don't work for everyone. I wish it would be easy to decide....if we all had crystal balls and could see the future we'd be rich! I wish you luck, whatever your decision may be. Take care.
Margaret
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Hey Socio! I'm doing all my thinking from now until May next year..so..why did you have your implant? I'm having a reduction on the left..that's definite. But my jury is out on the right. I kind of feel that a much smaller and light prosthesis would be ok. Could you not adjust to the implant? Please fill me in! Thanks!
XXKerry
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Hey Kerry,
I hemmed and hawed until about 2 weeks before the mast and decided to go with opinions I'd gotten from others as well as some of the things I'd read (better balance if something's there, clothes fit better, feel better about appearance when you still see something there after surgery, etc). I just haven't adjusted to the implant. I have almost as much muscle pain as I did with the expander and I wasn't expecting that. The nurse practitioner at the ps' office said the implant may be pressing on a nerve and that's what's causing the pain. She also told me that some folks just don't adjust to having it...I am probably in that category. The boobs look fabulous. I had a reduction/lift on the R breast and it's great! My boobs look like they're 15 and I'm 52!
I do have an appt. Nov 18 for the surgeon for my 6 month checkup and will probably see the ps then as well. I have talked to a few others that were deconstructed and their docs had them wait 2 yrs. before they'd do it. I guess because our bodies have been put under so much stress with surgery and recon it may take that long to get used to everything. If I have to wait another yr, then that's what it'll be. I do a lot of deep breathing and feeling myself up though Massaging the implant actually makes it feel a bit better but I can't go around all day everyday rubbing my foobie! Best of luck in your decision!
Margaret
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I had delayed left DIEP in July of this year and, for me, it was good to start the reconstruction process. I'm currently what ifing decisions on where to go from here re: stage 2 timing, nipples, etc. and I'm all over the place on my thinking. I was also very, very nervous about getting the reconstruction, mostly because I have a four-year-old son. I wrote about my DIEP experiences on my blog at beyond-breast-cancer.blogspot.com if you want to check it out.
Best of luck with everything!
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Hiyas ~
I didn't do reconstruction with my original unilateral mastectomy because I just couldn't face the 5-hour operation there. I've been happy/unhappy with the flatness on one side and may consider reconstruction later. But like you, I'm not ready!
Right now I am looking for a pocket camisole to wear at night because wearing a bra under my PJs just isn't happening! Right now I just wear a T and am flat on one side but don't like that. I think if I had a pocket cami I might just put a bath puff in there. I haven't got a husband or boyfriend, just a 10 y.o. so how I look in an intimate situation is not coming up yet.
I was thinking though of doing the henna tattoos on my scar area to dress it up!!!
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P.S. ~
I am looking for a pocket cami or solution that doesn't cost $40 each!
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Two cents from another flatty. I don't really mind. OK I never had much to begin with, and my husband has said many times he would rather me look like this with him than look as good as I used to and be in a box. I had a double mast in July this year. Everyone who knows me, knows that they were removed, so anything there would be fake, look it and everyone would know it! Who cares? I don't like the look in the mirror, but I am getting used to it. I try not to think of it as a bad thing. I look at my scars as medals of honor, I got breast cancer and I won!!! I would like to shout it from the rooftops. I know that I see the odd "stare" in stores, and shopping is challenging. I am a size 0 or 2, so finding age appropriate clothes has always been difficult. I am 50. My husband has been in and out of hospitals for 2 years and is now facing kidney transplant (I was to be the donor and that is how they found the cancer) Our son is donating his kidney so the amount of time I will be spending in a hospital environment is enough. I don't look like everyone else but I am perfectly healthy. What more do I want?
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Wilsope ~
On my breast cancer email list, there was mention of a B-flat club. So there are some ladies running with it and getting some fun. I would have done a double mast but thought that would be WAY too much surgery at one time. For me. It would be!
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Wilsope -- more power to you! I agree-- our scars are medals of honor -- there was a battle waged, and we won! woo - hoo!!!
I was on the fence re: reconstruction. I actually really liked my flat chest, because 3 weeks post mastectomy, I felt really good - no pain, and was getting back to my healthy active lifestyle. My husband didn't care.... he loves the "me" - my "being", and the extra skin on the chest is nice, but not necessary. What tipped the scale for me in favor of reconstruction, was just for practical purposes...... I love to run, weight lift, swim, etc..... I talked to some with prosthesis, and they said it was a hassle.
I had tissue expanders placed 3 weeks ago. To be honest, having the tissue expanders in is pretty uncomfortable. I miss the pain-free flat chest, but I've been told that once I get the permanent implants, I will feel good.
It is nice to know that implants don't have to be permanent. If for some reason I decide I don't like them, I can have them taken out. I think I will like them once I'm done with this "expander" process. Right now, I'm just looking forward to getting these tissue expanders switched out, and getting on with my life. I go in for my first "fill" on Monday.
Best wishes to all of you awesome ladies! Each woman's journey/choices is uniquely hers, but there sure is a lot of helpful input, support and comradery in the sharing.
God bless you all,
Sue
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