No reconstruction- Happy w/your decision?
Comments
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I didn't do recon, so I'm not sure, but the person I know who did do recon has to have mammograms. You might get more answers if you post this on the recon board just above this one. Good luck.
Dawn
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I had a right side mastectomy 7 1/2 years ago. Every time I have to go for a mammogram on my other breast I am a nervous wreck. Last time I went, they had to do additional images and then give me an ultrasound which revealed 2 or 3 small cysts, one of which was minimally complex so now I have to go for another ultrasound in 6 months. I am starting to wonder if life would be easier and less stressful with another mastectomy. I think it would be nice to be not have to wear a bra and prosthetic because I am not comfortable with the lopsided look in public. I met my husband AFTER I had the first one and he has no problem with it although I must admit I would definitely miss the sexy sensations that I have experienced since meeting him! Any thoughts would be appreciated!
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I had a mastectomy for the cancer 2.5 years ago and after living lopsided for a year (and exploring recon opportunities) I opted to have the other breast removed last summer. I have never regretted the decision to become breast free but I do have some problems at the moment with scarring. Nothing that can't be remedied though and I am delighted never to have to face mammograms again. I do enjoy the the flexibility to go boobless as I am not a fan of the prostheses. I never liked wearing bras and I feel so much more comfortable without all that equipment hanging off the front of my chest!
Good luck!
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Hi nervouswreckagain,
I'm sorry you're having all this stress about your remaining breast. I'm someone who had a lumpectomy in my right breast, then three years later was diagnosed with cancer in the left. At that point, I opted for a bilateral mastectomy. So I don't know what it would feel like to go from being a unilateral to a bilateral, but I do know it gave me great peace of mind to feel I had done everything possible to prevent a recurrence. And I sure don't miss mammograms.
Of course, in your case, you haven't been diagnosed with another cancer. My breasts were a very important part of my sex life, so I can relate to your reluctance to part with those good sensations. I'm copy/pasting something I wrote on another thread regarding my experience post-bilateral mastectomy:
I particularly want to address the question about whether not having breasts will change your sex life. I think it's a very individual thing. If you're comfortable with yourself and your partner is supportive, it shouldn't be a problem. In fact, in some instances there's a greater tenderness that grows between couples and makes the experience even richer.
Although my husband was very comfortable with my decision not to reconstruct and I never felt mutilated by the loss of my breasts or shy about having my husband see my chest, I nevertheless felt self-conscious about having him touch my chest when we were intimate. It didn't bother him at all. It was really my issue. Lately, I've found that if I wear my soft silicone breast forms (prostheses) during love making, I enjoy it more. Incidentally, so does he -- weird though it may sound, he's turned on by their realistic feeling. I expressed surprise at this and he said he thinks men are just hard-wired to be aroused by breast shapes, especially when they feel so real.
I should add that when my DH touches one of my breast forms, I get aroused, just knowing he's touching the "nipple." How strange is that? Nevertheless, it's true!
Hope this helps.
Barbara
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Barbara, thank you for being so open about this topic. My implants have given me a sense of security when my husband and have been intimate, but I am now starting to think about what it will be like after I have them removed. It took me a while to feel comfortable after the reconstruction and to go topless in the bedroom, so I guess I'll just have to take my time and get used to being flat, too. However, your comment about wearing your prosthetics while being intimate certainly has given me something to think about!!
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You are all so helpful and supportive and I appreciate you all! I wish I had known about this website 7 1/2 years ago! I must tell you that I do like when my husband touches my flat side, of course, it's not really an aroused feeling but it does feel good and give me a happy secure feeling that he isn't turned off by it. Will give wearing the forms a try and see where that leads!
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Barbara - thanks for your post. I'm not ready to be intimate yet (1 month out from bmx) but when I am , I'll have to give that a try. I don't think I would have thought of it.
Annie
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Hi everyone hope you all keeping well!If you are 52yr go for Recon.but over that age there is a lot of complications.I was upset when finish my treatment i ask my oncon.Doc.about my recon.In this year i will be 57. Done Modified Radical Mystectomy when i was 55 2009.At first i also want boobs because you dont want to go outside looking flat,but i got use to it and glad my Oncon.Doc.was against it.The hair was the big thing for me,i hate a wig but did wear it in public,i did not want people say shamed she`s got cancer,but here in the bushveldt they have a lot of respect for people with cancer.So the big pitcure here is selfimmage.I still got my port in and it will be in for 2yr in April 2011.i also want this port out because it remind me of my breast-cancer.Oncon. Doc. if the port does not give any complications then we keep it in.Late side effects of radiation my teeth are loose and full of infection.so the specialist will pull them all out next week.and no implants .I hope my nails does not fell off i am 9months out of treatment and on Tamoxifen for 5yr so everyone i am only 9month`s out and thought now i am fine no more treatment and all what go`s with it.But i will still fight this C!!!!!! and never let it take over my mind.So this is my story!Wish every one of you a Happy New 2011 May God help all of us and that the new Vaccine be the Cure for this disease.Luv Marlé
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It's great to read all the posts about recon or not and need some advice. I was diagnosed with DCIS last November. Because it showed up in two different places, I opted for a nipple sparing mastectomy and reconstruction. I had the surgery last Thursday. When I visited the surgeon today for my first post op visit, he said the temporary saline tissue expander is leaking. They suspected this earlier and put blue die in it to confirm. Who knows why it happened -- defective expander? Expander nicked during surgery? The surgeon says it has to be replaced, the drain put back in again, and then a third surgery to remove it and put in the permanent implant. I had so many horrible post-op issues the first time (vomiting, pain, readmission to the hospital) that I really don't want to go through this additional surgery. Either way, I will have to have the temporary expander removed. Does anyone have experience with stopping the recon midway through like this? Presumably I would still have the skin and nipple, just no volume inside it. Would love your thoughts. Thank you.
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I am almost 7 weeks out of a double Mastectimy with no reconstruction. I had 3 surgeries in a 6 week time and when I chose the last I didnt want anymore surgery I just wanted to be done. I havent started wearing my prosthetics yet as I am still waiting on my bras that I had to order.So far I dont mind being flat, mostly have a problem on sundays getting ready for church.
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I'm flat, too....and although I struggled at first, and I *do* have my silicone and micro-beaded forms, as well as two bras (one that I have worn once, and the other I've never worn at all), along with some cami's I got at Target (that have pockets that can hold the forms), I have found I go flat 95% of the time. In fact, I can't remember the last time I wore them - and when I DID wear them, it was with the cami. Granted, there are a couple of outfits that need "bumbs", so if I wear those, I'll wear the camis.....but mostly I just go flat. I've even forgotten what I looked like with breasts, and it's been just (almost) 13 months since my BMX. My husband isn't turned off by my chest - he kisses my scars, "grabs" ahold of what he can (actually, just places his hand along my chest, as if my breasts were still there)....
I used to really miss my breasts, but in June I had my major turning point, and I haven't since then. The only thing I miss is the comfortable feeling - I still have the tight feeling, and I feel as if I shrink up in the shower, but I think it's a LE issue, which I have mildly
I was like you, Nwest125, I dreaded sundays.....I play instruments and was always on the platform, and felt so conspicious after my BMX, but since scarves are such the fashion thing now, they work nicely to help distract anyone's eye that might happen to wander. Jackets and sweaters are nice distractions, too....But scarves are a BMXer's girl's best friend
blessings...robin
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Robin, if you don't mind me asking, what contributed to your major turning point in June? I am wondering how I am going to feel when my implants are removed and I am deconstructed. While I am eager to be pain-free, I know it is going to be emotionally difficult at times. DH is great, and I feel good about my decision, but I can't help wonder how this will impact me.
Tina
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Tina, you didn't ask me, but I'll give you my answer anyhow. I had a bilat in May 2006. I went flat for 6 months because I couldn't bear anything but a tight cotton tank next to my chest. I bought the silicone prostheses in November, so my insurance would pay for them. I wore them for about 4 months and was never very comfortable in the bras or with the big foobs the fitter insisted on selling me. I went flat again for some months, then I read about Pals and tried them. They were more comfortable, because I could wear them in a camisole and they were smaller, but I still was bothered by all the stuff I had to carry with me on trips, and the sense that people were wondering what was in there. (I told EVERYBODY about my BC and bilat.) After about 6 months, I went flat again. Next I tried Silique Comfort Lights, but I didn't like their projection (too much, after being used to seeing myself flat for so long) and they needed the support of a bra, which was not comfortable. Finally I tried the microbeads forms last year, and if I wear anything, they are it...but I haven't worn any foobs in about 4 months. This has been a long process. I'm coming up on 5 years since diagnosis, and I am finally comfortable in my own skin.
The first helpful thing I did was to get rid of everything I had that had darts for boobs. Over the next year I bought new clothes without darts. I still only buy things that way, and there are lots of options. I started online with Coldwater Creek Outlet, and bought a lot of travel knits on sale. Anyhow, I think what was best for me was when I got the size 2 microbead forms and wore them all the time for about 4-5 months. They got rid of the sunken areas (worst on the left) and yet they didn't look like I was trying to have big boobs. I wasn't self-conscious in them, and I had been in everything else. After wearing them for several months, one day I just took them off, and now I don't feel self-conscious any more without foobs. I don't know if it was the time elapsed of 4 1/2 years or the more gradual adjustment to being really flat. All I know is that now I'm not self-conscious any more. I really don't think about it much at all now, which I didn't think I'd ever be able to say.
I do know it is a process, and it differs for each of us. I am very grateful to be where I am today, and I trust that your process will lead you to a peaceful resolution to wherever you need to be...with or without foobs. I will note that when I was wearing foobs, I generally wore them day and night, because the hardest thing of all for me was changing! Having boobs when I looked in the mirror one time and not the next. It was awful for me.
Dawn
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Dawn, thank you so much for taking the time to answer. Because of my truncal LE, I won't know if I'll be able to wear prosthetics until after the surgery. I'm trying not to think too much about it right now since it's something I don't have any control over and will just deal with when the time comes. I wouldn't mind being able to wear a small prosthetic under dressier things or if I need to conceal a concave area.
It's really interesting what you bring up about tossing all the old clothes that no longer work and the contrast of looking in the mirror and sometimes seeing yourself with boobs and at other times flat. I really get what you're saying with regard to both.
Besides the physical pain with which I've been living, I've found it so frustrating and depressing to go through so many wardrobe changes in the past two years. When I first had my bilateral mast and had to go a month with empty expanders, I just adapted and found clothes that worked. I never stuffed, not even to balance the two sides as they expanded over five months. I got to be pretty good at "smoke and mirrors" dressing. I actually was so happy to be cancer-free that I didn't feel too bad about losing my breasts - but, of course, I had that safety net of the "boobs" that were yet to come.
After my exchange surgery, the shirts I wore prior to my BM no longer fit! The PS made me slightly larger than I was prior, so I had to throw away clothes that were too small. It took me a few months to find a few bras that actually fit and then new tops that fit. Within six months I developed lymphedema and was put in a compression tank 24/7 for seven months. I was told I could not wear the bras I had purchased. It was back to smoke and mirrors dressing because the tank did nothing for my implants or new tops. Fast forward to the end of LE treatment, the tank was driving me nuts and the therapist told me to wear nothing. Well, going braless was certainly a relief, but my implants have a bun shape and don't look great without a bra. So now I'm into another wardrobe change and finally kind of have an idea of what works - more smoke and mirrors.
I have found this need to modify my wardrobe and undergarments numerous times over the past two years utterly exhausting!! It's also been heartbreaking to watch my implants become distorted. I just need to know what body I'm going to see when I look in the mirror. And I need to know when I look in my closet that I can wear my clothes and feel good in them. I want to throw out more clothes, but I'm waiting until I know whether or not I can wear prosthetics. If I end up going formless anyway, then I'll have an idea of what works and what doesn't.
I'm still waiting for the "new normal". Whew! Thanks for letting me vent!
Tina
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After left MX with TE in October '08, followed by chemo, radiation and capsular contracture twice, my implant was removed at the end of October '10. Two weeks after that surgery I developed a huge hematoma that required another surgery and then had an infected seroma, so it took a long time for the incision to heal. I finally got a prosthesis last week and I'm really happy with it because it actually stays put in the pocketed bra! I am still adjusting to the change in my body and am not crazy about being lopsided, but it is definitely better than going through more surgeries.
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Tina,
You're welcome. I know most people probably think getting a whole new wardrobe is fun, but for me it was disconcerting, uncertain, and really hard. But it wasn't as hard as the first couple of months after my bilat, when I would stand in front of my closet, finding nothing I could wear, and just sob for 30 minutes at a time. The microbead forms are comfortable, easy to slip into a cami, and relatively inexpensive, and for me they were an excellent step down to being happy being flat.
Dawn
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It is so interesting to read this thread. I can identify with all the feelings. Having seen reconstructed breasts prior to my own surgery (I work in health care), I felt they looked and felt unnatural and it didn't seem worth the trouble and added discomfort. After my first mastectomy in 2008, what bothered me most was the asymmetry! I wished my surgeon had been willing to do both at the same time. Then a year later I got BC in my other breast - yea! (ha ha) and it was a no brainer to get rid of that one as well and be symmetric, even if flat. These past 2 years have been a journey of trying various prostheses and bras, and, believe me, I have tried them all. I mostly go bra-less and find that many tops camouflage very well and folks don't notice. My latest greatest discovery is a bra called "Zee Bra!" which has got to be the absolute most comfortable bra I have had pre or post mastectomies! I use it w/my silicone boobs and it somehow prevents the sweating and heavy feeling. It also comes with its own variety of inserts for making your bust as big or small as you'd like! I am still working through the self-consciousness of my body when naked; I used to have no problem with that at all, but I am getting there and still don't have one bit of regret at being breast-free. Hope that helps.
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So, PinPDX, where did you find the ZeeBra? Just curious....I haven't worn a bra for months and months, but I hate to see $600 worth of silicone just sitting in boxes, too....of course, I haven't even worn the one bra I *did* end up with...ha!
I'm like one of the gals earlier.....although I haven't actually gotten rid of my darted tops, I just dont' wear them, and I certainly don't buy them anymore. In fact, I wear a whole size smaller now because of being flat
Now, if I could wear my pants size one size smaller, too...blessings...robin
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Hi robinlbe,
You can order a ZeeBra from the web site which is very informative and easy to use. Yes, it is a little price ($40.00) but I have to say, it IS REALLY different and amazingly comfortable. When I clicked to ask a question, I got an email from the woman who started the company. She sent the bra right out with a sweet note and included extra pads to adjust the size with. I ended up actually sqeezing my $600 "big boobs" into it since - just like you - I'd given up on wearing them! (At one point I even gave them to my daughter to cushion raw eggs she was dropping out of our second story window in a physics experiment... but I digress.) I really like the gal who invented this bra - she told me they are coming up with a new one with bigger openings for BC users. I hope you like it as much as I do so far... don't get rid of those old tops yet!! Here's the web address:
www.thezeebra.com
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Wishing I'd have just had them remove both because of the assymetry following mastectomy and having a 44 C breast. Most days, I find I no longer want to hang on to the only breast I have left and it gives me back pain, shoulder pain, trouble balancing when braless, and prosthesis works well, but hate wearing it anyway. I do know that my medical insurance will cover the removal of the other breast as a reconstructive surgery. I've considered it more than one, maybe I will do it someday. Can't bear the idea of reconstructive options, surgeries, weekly doctor visits again and potential reconstructive issues. I had so much trouble with drain tubes and healing after my mastectomy, I never want to go through that by choice...
You've never really seen yourself naked until you are bald (-;
Genell
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PinPDX,
thanks so much for posting the information about the zeebra....I wish I had known about these when I still *had* breasts!!! I had a hard time finding bras to be comfortable even back then. Somehow, after my pregnancies my ribcage expanded, and nothing ever fit right. Of course, it was worse after my BMX.
$40. is more than what I would have paid pre-BMX, but that's what my mastectomy bras cost, so that's really not bad....esp. when you consider what she's gone through to get these, AND that the patent is pending, and all. That doesn't come cheap.
So, because it comes with the pads already, are there pockets that the forms can fit into?? My forms are a size 5 (I think....it's been so long since I've looked at them, I couldn't swear to it, but I think that's what they are...)
I just can't stand anything tight around my ribcage. Often, I *still* have that tight feeling when it's just ME.....
blessings..robin
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ROTFL- I'm just imagining the physics experiment. what a brilliant use of foobs.
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flash, I got a really good laugh, too.
Thank you, PinPDX.
I think you've hit on the number one theme of dressing well, post MX/BILAT surgery:
A SENSE OF HUMOR!!!!
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Robin,
I'm like you -- I can't stand tightness around my rib cage. I've only recently discovered bra extenders (don't know why I never knew about them before), which have made a huge difference. If you haven't tried them, maybe they would allow you to wear some bras that feel uncomfortable because of a tight band.
I tried the Zee Bra. I loved the fabric and it was very comfortable band-wise. But for me, neither silicone nor foam forms worked well in it. And the pocket openings on the current model were very small, making it hard to get the forms in (I worried about puncturing the silicone forms--I wear size 3 or 4). I wound up giving my bra to a friend who is quite small-breasted and always looking for bras that work. She loves it!
I do recommend the Zee Bra on BreastFree.org, because some women, like PinPDX, find it works really well for them with their forms. Like so many other products, it seems that the only way to know whether it's a good choice for you is to try the bra yourself. If it doesn't work, you can return it.
Barbara
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Hi Barbara...Ahha, bra extenders. Yep. I have several different kinds sitting in my little basket on my dresser
Actually had those pre-BC days......but thanks for the suggestion. It might benefit someone else!!
I'm glad to know that the pockets on the ZeeBras might be a little snug for the silicone forms. I'd hate to do anything to hurt them, even though I'm not wearing them...ha!
blessings..
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Barbara, I don't believe I've ever thanked you for your site. When my surgeon couldn't understand that I didn't want reconstruction it was nice to find your site and realize that I wasn't the only woman that felt that way. So thank you. If I could have had reconstruction that felt like my own and gave sexual pleasure, well with something magical like that I would have had reconstruction. But the scar tissue I had from previous biopsies drove me nuts and I just knew implants would also drive me nuts. I like being able to take them off when they bother me.
I emailed the Zee Bra people the other day and they are coming out with one with bigger pockets and longer strap adjustment sometime this spring.
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I am very happy with my decision. I had a double mastectomy in November 2005 I did not wan to go through chemo radiation again. . I had the implants inserted right after the double mastectomy surgery. I had to wear drains and two weeks later the implants were both leaking from the stitch site on both breasts. It turned out my body rejected the implants so they were removed. Since December 2005 I have been wearing silicone forms and forms for my bathing suit. My husband is my biggest supporter, he kisses me as where my scars are and he always tells me he is so glad I am here with him. I also love that on the weekends or when I am home from work I don't have to have my bra on. I just wear a t-shirt. I am also glad I don't have to worry about mammograms any longer.
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Hi I am 67 so take age into context. Had bilateral mastectomy due to poor margins and a personal decision. Did nothing for 2 years and then made a decision to have reconstruction, found a recurrence so gave up that idea. Got prosthesis and will have surgery to clean up breast site and not thinking about it right now. Maybe will get a tatoo if the bones in my chest stop hurting.
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Hi,
I'm 63 and, after 2 failed attempts at reconstruction post rads, my 2nd implant was removed a few months ago (I'm a uni). Now it is 4 months later and I'm feeling much better, but my scar is still looking pretty rough and the whole area is lumpy and hard with scar tissue and very concave on top. I am thinking about talking with a different PS to see if the area can be cleaned up/evened out eventually, but my body produces so much scar tissue that I'm not sure this will be possible.
One question -- Does anyone have any ideas about how to raise necklines (a nice fabric insert or some wuch thing)? I have to wear crew neck T's and other shirts because I'm SO concave on top.
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The first time I got breast cancer I was 38 and wanted a mastectomy; the doctor recommended a lumpectomy and lymph node removal, I had 3 positive nodes so this included intense chemo and radiation. After one year I had a reoccurance and had a mastectomy. I wanted both breasts removed but my doctor said I should wait at least a year to decide and he left a lot of skin in case I wanted to reconstruct. A year later I had my other breast removed. I was so tired of living with one 40DD breast and one huge fake boob and felt so much freedom after my mastectomy. I gained quite a bit of weight with my second round of chemo so I have not been very satisfied with how I look for many years. It is hard to find clothes that fit but Chicos has some nice tops that don't have darts and I always wear tank tops under my tops. I am now losing the extra weight and am excited to see my new shape take form...I have never regretted my mastectomies and love my battle scars! It reminds me of the fight I have won and gives me the power to face anything that comes my way. My husband has loved and supported me through it all -- I am so lucky! I hate trying to find swimsuits but decided this year finally at age 51 that i am going to enjoy my life and not worry about how I look. Macy's has a large selection of swimsuits, so I lucked out and found one that works--had to rip out the underwires! I suffer from lymphedema so I deal with a lot of crap from this disease but I'm alive and well in 2011~~Whether or not to reconstruct is such a personal choice ~~ just wanted to share mine and let you know I have no regrets!
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