No reconstruction- Happy w/your decision?
Comments
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Murmist, glad you saw someone. Tht really sucks that you already have a problem in the legs. I am trying to find ways to minimize it, and so far lymph massage on the neck, staying hydrated and eating fresh chilis all seem to help.
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Just wanted to mention that I'm 1 year out of a prophylactic mastectomy. My first mastectomy was almost 18 years ago and I've been NED since completing treatment 17 years ago. I couldn't be more at peace with my decision to have my other (healthy) breast removed. I actually find being breast less very freeing. No plans for reconstruction. I won't say never but, right now, I can't imagine ever wanting it.
Lynda
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I don't like the amoena camisoles. I find the breast forms go to the sides too much and get in the way of the movement of my arms. For awhile I would put a safety pin to prevent them from migrating to the sides, but, too much trouble. I love the amoena Mona bra,sometimes it shows a little because it is not low cut at all, but, family and friends say it looks like a little cami is peaking out, not a bra-- I just go with that!
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Sorry for jumping on this post, not sure if I should start a new one...I had a lumpectomy but developed lots of scar tissue and a huge hematoma. Not sure how much breast will be left after re-excision...The BS wants to save the breast not sure if she will be able and not sure if I want it for recurrence purposes...
Nice soft cotton prosthesis in the UK?
I am leaning towards Mx with no reconstruction as I want no implant issues/ infection/ changing after some years, no more body surgery/flaps, I have two young children cannot afford long recovery both physically and mentally.Husband is happy for me to go flat one side,told him I will be like the Amazons!Any thoughts? -
Why does she want to save the breast? I didn't have much of a choice, but I'm happy with my MX, even though I have issues (pain, adhesions), AND I'm really glad that I didn't have reconstruction. I had to have punch biopsies to rule out skin mets, which it did, and that triggered my LE big time, I can't imagine what recon would have been like with my scarring & LE issues. Right now (2 1/2 years post MX)
When I have my camisole on with the prosthesis, you can't tell I don't have a boob, and it really is pretty comfortable, I love the camisoles they make, I haven't worn a bra since I got them. Though now I'm considering a prophylactic MX, I'm really lopsided, and was big busted, hated wearing a bra..... I think I'll be more comfortable w/o any breasts!
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http://community.breastcancer.org/forum/82/topic/789067?page=47#idx_1384
Here is where you can find some of us who have been where you are. We're a fiesty group.
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hi, i was diagnosed at age 38 two weeks ago with 3 IDCs in my right breast, and have 3 kids youngest aged 4. i was told i need a MX because the tumors are too far apart for an LC.
i was considering DIEP flap, because the PS said i'd be a good candidate since i have a lot of loose skin from my twin pregnancy. however, now i'm thinking i might forego all reconstruction so i can start my chemo - and my life - faster. i am still grappling with the loss of my breast. it makes me sad but i don't like the continued fuss that reconstruction requires.
how you arrived at your decision not to reconstruct? i have never considered plastic surgery before my cancer diagnosis, and i feel almost pushed into reconstruction.
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Tinatess - yes very soft foobs after surgery in the UK. I have a friend whose lumpectomy was very large and left her with a peculiarly shaped breast that required a prosthesis to fill in the gap so to speak. Ultimately she had a mastectomy to remove the breast entirely and was much happier with a flat chest. Don't let the surgeons push you down a route you don't want to go. If you want MX then insist on it.
engk916 - so sorry to hear of your dx. Very hard when you have young kids isn't it? The reasons why I don't reconstruct are ....
I have yet to see a good reconstruction. It is not a real breast. It will always be a lump of silicone or a bit of your stomach or back sewn onto your chest.
Reconstruction goes wrong a lot and can open a can of worms healthwise. I have enough to worry about without creating extra problems or infection/nerve damage/etc for myself.
Recon is extensive and often requires multiple surgeries to keep tweaking and adjusting. Implants need replacing. I haven't the time or the inclination to be bothered with it.
My body has been through enough with all the cancer treatment. It needs to just get better now not be subjected to hours and hours of being chopped about.
I am scared of more surgery. Life saving surgery is one thing, elective surgery for cosmetic reasons is another.
Chopping bits of my body off and sewing them on somewhere else makes me feel sick. I knew a woman who had the back muscle recon - she had a constant involuntary twitch which made her "breast" move - the PS could do nothing about it. And once it is done there is no going back.
Being flat is very comfy - you don't have to wear a bra.
Don't feel pressured into recon. Give yourself time. Deal with the cancer as a priority. If you want recon later you can get it.
Best wishes to both of you.
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I agree with Greenfrog's list and would add that testing for future tumours was not a reliable option for me. Scans totally missed the majority of my bc the first time around.
For me, being flat is not a huge issue.
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I'm not a good candidate and would have to have a TRAM or DIEP. I live in a rural part of Oregon and would need to do some major travel to have recon done at a place I would feel comfortable with, and you have to go something like 4 times, why put myself through the time, money, pain of that - I'd rather go to Hawaii with the family and lay on a beach. (Vitamin D you know)
I have LE, and didn't want anything to mess more with that.
Don't want more surgery, though I am considering a prophylactic MX so that I won't be sooooooo lopsided.
I'm dealing with a lot of residual side effects from my treatments and AI, causes a lot of pain, fatigue & cognitive issues, why ask for more.
I hate bras!!!!
And everything that greenfrog said.
It's interesting - none of my family, husband, parents, children - want me to have reconstruction either.
Linda
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I agree with all three previous posts.
I think our society hands us "rules women should follow"--and we are expected to suffer shame for not looking "normal." There's a pink ribbon culture that's turning toxic...and compromising our health instead of helping us to heal. My advice is to listen to your common sense and go with your gut.
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Well said Aerial!
And something that has really been bugging me, and this seems sthe perfect place to get it off my chest (no pun intended?) - Sharon Osbourne - if she had just gotten a boob job at 60 would she have gotten the publicity - could it be that BRCA can buy you a boob job just when they are really sagging? Sorry - a little snarky!
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The way I came to my decision was to read all about the recon options and what they entailed. I tried to have an open mind and be as educated as I could. I had my pro/con list and the pro side was short, very short. The con side was much longer. In the end...There was just nothing that could convince me to endure all the trauma and pain to my body to under go the reconstruction.
In many cases the final results are very disappointing. I have had more than one woman tell me that if she knew then what she knows now, she wouldn't reconstruct. The possibility of what it might or might not look like would have really stressed me out. I worked in cardiology and did EKGs prior to bc and I cannot tell you how many "bad" boob jobs I've seen. I also spent time in the OR and have seen thee goop spooned out of women whose implants ruptured. I also saw lots of flat women who made the choice to stay flat. There are more of "us" out there than you realize.
I will say that I echo the things Grenfrog and Pip57 mentioned. Also the lymphedema issue that Linda KR brought up.
Some women go flat no bra and love it. I go bra-less and flat at home, but I wear bras with forms when I go out or to work. Only a handful of people know about my bc, but again, that is my choice and I like to keep it that way.
It is a very personal decision. I don't have a problem with those who decide to reconstruct, it just wasn't the right thing for me personally.
engk, don't let anyone pressure you into something you don't want. It is you that will have to live with the consequences. Do your research and then do what you believe in your heart is the right thing for you. Best wishes to you as you make your decisions.
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I had a single MX and immediate reconstruction with a tissue expander, followed by an implant. It was absolutely the right thing for me to do at that time in my life. I'm glad I made that choice. Still, if I were diagnosed today, being at a different point in my life I might make a different decision. I think that reconstruction is an important option that should be available to all women who have mastectomies, but I also think that the 'no reconstruction' option is just as viable and reasonable a choice. Doctors should discuss both options with patients who will be undergoing a MX. I think for many women there is a fear of living with no reconstruction - the downsides and possible problems of living without a breast (particularly for those who have a single MX and are lopsided) are pretty obvious. What concerns me is that I don't think that most women going into reconstruction are aware that there are also downsides and possible problems with reconstruction - and I'd guess that there are probably many more possible problems with reconstruction. The truth is that for many women, reconstruction is a very long process and the results are not all they are cracked up to be.
It seems to me that over the past few years the focus on reconstruction has increased. There appears to be a real push toward reconstruction, with the thought (both among doctors and patients) that reconstructing will somehow make you "whole" after breast cancer surgery. There is such a positive spin being put on reconstruction that we are now regularly seeing women here who are choosing to have BMXs because they want to get "something positive" out of their breast cancer experience, i.e. a "new set of perky breasts". Or because they are worried about the appearance of their breasts after lumpectomy surgery and believe that they will have better looking breasts after reconstruction. There are lots of good reasons to decide on a BMX but to choose it because you want the "benefits" of reconstructed breasts... yikes!
PIP, the article that you linked from the Huffington Post was actually one of a series of articles touting the benefits of reconstruction. Some time ago the author came to this site to recruit people to interview. I chose not to participate because it was clear to me that the objective of the series was to inform women about the option to reconstruct, and to present reconstruction as the be-all and end-all solution for those who have breast cancer.
Here is a link to the whole series of articles. I thought that the women in this forum, and particularly, on this thread, might be interested. A few women have posted their stories and have disagreed with the premise that reconstruction is the way to "rebuild" after breast cancer. Perhaps a few more from here will post so that a more balanced picture is presented. Certainly I don't disagree that women in Canada (the series is Canadian based) needs better access to reconstruction and particularly, immediate reconstruction, but I also think the message needs to be more clearly put out there that 'no reconstruction' is an acceptable option too, and that many women are happy with that choice.
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Hi engk916,
I've read many posts from women here at bc.org and I also hear from women who visit my non-profit website, BreastFree.org, that breast surgeons and other doctors involved in their breast cancer care pressure them to have reconstruction. I think that mostly the pressure is well-meaning, stemming from a belief that women can't feel happy or whole without breasts. That pressure seems especially strong when the patient is, like you, on the younger side.
In some cases, I believe these doctors are projecting their own feelings onto their patients. They themselves (if they're female) can't imagine being happy without breasts so they believe that their patients won't be happy without reconstructed breasts. If the doctors are male, they may feel they would want their wives to have reconstruction so assume that's the best course for their patients. Yet, there are many women who don't feel defined by their breasts and don't feel any less whole or happy without them.
Like Beesie, I'm very glad women have the option of reconstruction. I considered it myself but it just didn't feel right for me. I came to think of reconstructed breasts as internal prostheses, since they're not really breasts but either implants or tissue from other parts of the body. I decided I would rather wear external prostheses. I do that for the most part, but I also enjoy going totally flat when I'm at home. I've found very comfortable prostheses (breast forms)--while I like to look as if I have breasts when I go out, I refuse to be uncomfortable doing so. I should say that I'm plenty vain and do care about my appearance. Neither my confidence (nor my sex life) has suffered as a result of my bilateral mastectomy without recon.
I can relate to your comment about not having considered plastic surgery before your bc diagnosis. While I don't equate reconstruction with cosmetic surgery, I also never wanted any kind of plastic surgery and felt that I would actually be happier with a smooth, flat chest than with a reconstructed one. I had my surgery in 2006 and haven't regretted my choice. It's worth remembering that if you decide not to have reconstruction now you can always change your mind later.
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I'd like to add that I would rather my BS was concentrating on making sure that he/she gets all of the cancer and does a good job, rather than making sure that I could have reconstruction.
I did check out recon, did the pros/cons things, and like FL warrior, the pro list was pretty darn short, and the con list was long.
And like Erica it hasn't hurt my sex life. Now AI's - they don't help my sex life much -
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Sorry Beesie, but that link just enforces what many of us 'flatties' are up against. It is trying to convince women that it will be a wonderful way to put bc behind you. NOT! This link from the article is the crap we are constantly being told. Let's start telling these women that they can find beauty and happiness in their new body without reconstructing old body parts and hoping that they will be just like the 'old' ones.
Like you, I really do believe that all women should make their own choices. But it is the glossy pics, professional looking web sites, and breast surgeons advertising that tells us how they make women feel 'whole' again that are helping to keep women from entertaining the alternative.
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So are there any famous BC survivors that have not had reconstruction! It seems that when they (the famous) speak out about BC - so much of it is about their reconstruction.
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Exactly. I believe that they feel that they must appear 'normal' because they live very public lives. Can you imagine if an actress bucked the system? It would put a whole new face on 'normal'.
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I have had reconstruction, one step implants. Surgery was skin and nipple sparing but later had to have one nipple removed because path report showed dcis too close to nipple. My doctors, both surgeon and ps, gave me all the options, scenarios, pros and cons. At a post surgical check up, my ps asked what I wanted to do about the missing nipple. I told him, that as of now, nothing. I was in no mood for any more surgeries. He was quiet for a moment and then said that he used to think that all patients would want to be as complete as possible after mx but over the years he has learned that is not true and he honors each woman's choice. Couldn't you just kiss this guy? He really is a gem in acknowledging that recon and being made "whole" is not for everyone.
Caryn -
exbrnxgrl - what a great PS. I went to a consult with a PS, just so I really knew my options, someone was watching out for me because of the 3 names I was given by my RO, I happened to choose the most conservative of the 3. He was so honest, he said that if I really wanted reconstruction I could have it, but would need a flap surgery and he doesn't do those, and said I should probably go out of state for that type of surgery (he explained it in detail for me, not scary, but honestly). He also told me I really wasn't a good candidate due to excess scarring, extensive radiation, etc..... I felt so good about that consult, I felt that I truly got an honest answer rather than a we can do it!!!
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I had a gem like that too Caryn. They are out there.
That is why I feel so badly for those who don't have drs like ours. Or those whose drs say it is your choice but here is the great thing about recon....
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PIP, I agree with you completely about that series of articles. I may have chosen reconstruction for myself but I don't like the way that reconstruction is presented to breast cancer patients. Too often, there are a whole lot of lies and make-believe. That's why so many women go into reconstruction with unrealistic expectations. That's even why some women choose to have bilateral mastectomies, thinking they will come out of it all with upgraded breasts.
I posted that link in this thread because I find the series of articles to be so unbalanced. I know that there was a response posted to the one article from the series that was published on the Huff Post and I thought that some of the women here might also want to post responses to this series, to make the point that reconstruction is not the only way to find happiness after a mastectomy.
Caryn, I chose no nipple reconstruction either. For me, because I was having a single mastectomy, I wanted reconstruction so that I would be even, so that I would have something to fill my bra and wouldn't have to deal with a prosthesis. But I never expected to get a replacement (never mind an improved version) of my original breast. So I never saw the point in having another surgery just to add a non-functioning nipple on top of a non-functioning breast. My PS was a bit surprised but accepted my decision right away and never tried to sell me on being "complete".
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Not that this is the most important quality in a ps, but mine has a great, sometimes irreverent sense of humor. We were discussing what bras to wear post surgery and he had very specific comments i.e. brands, styles etc. After a few minutes he had a slightly horrified expression on his face and said, " whoa, I know way too much about women's bras". He is one of my all time favorite docs!
Caryn -
Linda Ellerbee came to mind. I knew she had a humorous story about her breast form falling out of her bra and her dog taking off with it but I wasn't sure if she may have later had reconstruction so I just Googled her and found this piece with a nice picture too. It is evident by the pic that she didn't have recon and that she doesn't always wear forms:
http://www.gallery8010.com/news/index.php?id=5
Edited to add: She's a journalist not an actress, but she does appear on TV and in public.
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Thanks River Rat!
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Excellent. She looks amazing.
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I found this article about whether or not to reconstruct - it has Linda Ellerbee's decision in it, as well as others, it was interesting, and not too one sided - http://kroger.staywellsolutionsonline.com/RelatedItems/34,21020-2
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Thanks, River Rat!
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Good article. When the last woman mentioned the droop, it reminded me of my mother's friend who had to have re-reconsturction after 15 years because her real boob was droopy and her foob was perky. The good news...she is still here! Isn't that what we all really want!
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