I look for other flat chested women. A rant.
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Photos will be great if you can't make it! I think we should post as many as possible.
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Not sure of the relevance but just to share my two personal mantras:
Number one is used mainly whenever I'm waiting to be told the next bit of bad news but also whenever I am lacking confidence ... it is just "Trust".
And number two is used whenever I find I am allowing something that someone says or does to affect me negatively in some way... it helps to regain balance: "For those who understand no explanation is needed; for those who don't no explanation is possible" (Joseph Dunninger)
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I'm playing catch up, but I love the Matuschka quote: "I have always adhered the the philosophy that one should speak and show the truth, because knowledge leads to free will, to choice."
It precisely iterates my personal philosophy.
Wrongchick -- You wrote: "I know there are BC sisters who distrust and resent breasts. I get it, but I never felt that way. My breasts were a beloved and powerful part of my womanhood; they produced copious amounts of milk for my children and provided me intense sexual pleasure. I miss them terribly; my mourning process will be lengthy."
I sympathize. I loved my breasts too. My mourning process began after weening my daughter and my breasts atrophied from the Bs I loved to empty, saggy As. By the time of my BMX I wasn't missing much. But believe me, I grieved in that transition from pretty Bs to unsightly As, even took photos and wrote poems about the changing geography of the body. My body is part of my biographical narrative; it has stories to tell.
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Las Vegas, 9/28-10/1 (or thereabouts) the 4th Annual TA TA Sisterhood re-union. Flat chested, reconstructed, or not, it is a group of BC survivors that get together and do just that.....
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Annemarie, mine became soft after I gave birth and nursed. They actually touched my ribcage, if I didn't wear a bra. They also hurt a lot more after the nursing. I mourned them then. As far as I am concerned, my boobs already became history back then.
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Momine: Regarding your comment, "As far as I am concerned, my boobs already became history back then," I hear ya!
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Yeah, people would tell me to get over it, but I never did.
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Glad I found this group. This week I decided on a left MX (already had right) without reconstruction. Don't want the hassle of surgery, don't want the increased risk of LE, don't want the possible risks with rads. I'm done with all that. Tired coordinating work/time off, etc. Just want the last MX and call it quits.
Don't plan to get prothestics. I have poofy, fiber boobs I will wear for those occasion when boobs are required (like clothes that don't fit w/o boobs). Fiber boobs are lightweight and cooler and don't cause shoulder pain.
Decided I don't need boobs, I need to move on with my life.
Already have appointment with surgeon and plan to move forward as quickly as her schedule will allow.
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Congrats, Ohio4me! Whatever decision you made, or may make in the future, in my view, all that matters is that it's the right decision for you. If the decision serves your needs; it's a good one.
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Can someone please suggest a place to look for statistics on how many women diagnosed with breast cancer have reconstructive surgery? How many don't?
I found this article, which is somewhat old. Someone here on the board said 35-45% of women get reconstruction and this number seems high compared to the study I have found.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2884720/
And will you please tell me .your. opinion of why more women don't go flat?
I am settling into writing an article about going flat and just want your thoughts. I know what my opinions are, I want to hear yours.0 -
check on some radiation oncology sites for info. My RO told me women who wait a year for recon are more likely to go flat - he must be getting that stat somewhere.
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I know that Robert Wood Johnson in NJ has a breast cancer coordinator. So does Thomas Jefferson in Philly. Coordinators might know the stats - or where to find them; maybe if whereevver you went had a coorindator - you could touch base.
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I had a right mx and my left side is a 40 D. I have to wear a prothesis because I would be so uneven. They did not want to do a bilateral mx on me because they did not want anything to slow my recovery and starting chemo. I did not want reconstruction so I wear a prothesis. They warned me that the weight of the prothesis would hurt my shoulder but I don't notice that I am wearing it.
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My BS told me that 50% of women reconstruct & that is it a little higher in my part of California.
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Mel, I wear foobs most of the time for many and sundry reasons. But mainly because it allows me to blend in and not constantly have to deal with and think about the cancer. I wear a lymphedema sleeve on most days and that is bad enough (constant questions and "advice"). I do think that if I lived in NY or in Copenhagen, I might go flat more.
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I think you are going to find as much variation in statistics for recon as you do in political polls. They are all just estimates based on a sampling and it will vary based on the sampling size, demographics of the sample, etc. But mostly it will vary based on the criteria for who goes in which pot. For example one survey might be based on those that have had recon in say a year after MX, other may lump together those that have had it done for both prophylactic and medical reasons or just one or the other, still other may count based on the type of recon (flap, implant, etc.). The same is true on the no recon side. So haven't but eventually will, others may not have surgical recon but us prostheses, etc. etc. etc.
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Melly, There is also the issue of deconstruction to consider. My brother in law was a NJ surgical nurse and he said the past 15? years he has assisted in more deconstructions that reconstructions.
So you might look for a deconstruction statistic too.
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I would like to know the true number of implant recon revisions, reoperations, replacements, and actual implant recon failures. The FDA has been requiring Mentor and Allergan to do long-term studies of their implants, but they claim to lose track of patients so the data is not nearly as accurate as it should be. I have an issue with the fact that the manufacturers themselves are policing their own data, so they have no reason to care if they lose track of patients. How wonderful that in Europe there is a centralized database for this kind of info.
One thing I found very interesting on the FDA site is that life-threatening issues or permanent bodily damage caused by implants must be reported by the doctor/surgeon to the implant manufacturer. This info should be transmitted by them to the FDA. After my surgery last year when I discovered my pectoral muscle had been permanently damaged by implant poking through it, l sent away for forms to file a report of bodily damage caused by my implants. You can file online, but there is hardly any room to describe problem, so I did it via paper. I wanted to know for sure that my info was sent to the FDA. The doctor who removes implants due to problem is not required to report incident directly to FDA, but they can if they want to.
I'm off and running, can't shut up . . sorry if I offend anyone here.
I used to think that most of the folks who were happy with their implant recons just disappeared from the forums because they got on with their lives. Figured the people remaining here were much like the consumer reviews you read for TVs or washing machines -- "Love, love, love!" or "Hate it - broke two weeks after I purchased" and nothing in between. I am not so sure about that anymore. I think a lot of women suffer in silence. Until the last year or so, there really was no room for complainers or those who weren't positive about their expansion experience or results of implants, especially when it involved pain. It is a little better, but still, no one really ever wants to hear negatives about surgeries. For example, the thread for those who want to hear from others who have had rads and success with implants. Really? If you want to find someone who can tell you they are home free with no implant issues after rads, you will find them. Is that the reality of implants after rads? Some docs now do rads once implants are in place. Really, is that any better? I can't say for sure, but I doubt it.
The thing about implants that really pisses me off, is that they are made to seem like some simple process compared to DIEP or other flap surgeries. Such a joke. Until you go through the process to reverse, you have no idea. I learned more about it after I was deconstructed than before. If anyone had told me exactly what an implant recon entails, I never would have signed up. I only signed up for one "set", thinking I would just have them removed once they "expired", figuring I would be in my early 60s and have no need for another. They just said, sure you can remove them later. Well, yes, you can do that, but you are not going to look like you did if you just had a mastectomy without recon. I know I researched and made a decision I thought was right at a very stressful time. I no longer blame myself for the damage to my body, but I am somewhat angry that I was not told the truth about implants. Here's the kicker when it comes to info on implants: if you go to the FDA site and look at the labeling for implants. The patient labeling is not nearly as detailed as the physician labeling. WTF??? If I had read that labeling prior to surgery, it would have totally changed my mind. And the glossy pamphlet you're handed in the plastic surgeon's office tells you even less.
One more thing. I was fortunate to have a plastic surgeon I consulted tell me that with the development of capsular contracture and pain I was having that my recon had failed. I was somewhat stunned. I was choosing to remove them because I didn't want to go any further to try and salvage my recon, but what they said was true. All the suggestions I had received to keep my recon involved further and more extensive work. This is what you see women doing for long periods of time when things go wrong. I am amazed when I hear about more revisions, swapping implants, bolstering with heavy duty stitches, adding alloderm, and on and on. We are so desperate to have that picture shown to us in PS office that we are blind to what has happened: recon failure. I would rather see someone just bail asap and go right to DIEP or another flap surgery. I know they have their risks, too, but the implant merrygoround is just absolute nonsense.
My, goodness, I feel so much better.
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I guess I just outed myself. I will admit it. I hate implants, and I think that type of surgery is barbaric. However, I will never try and tell someone else what to do. Everyone deserves to make the decision that feels right for them. You want what you want, more power to you. I feel like I have been trying to tiptoe around how I feel about this for so long, and I have actually fibbed and said that I am not opposed to implant recon. If someone chooses it for themselves, I am not opposed and will honestly support them while they go through a process here on these forums. Everyone needs a hand here; BC is a nasty disease. But I won't pretend that I think this is a normal and healthy surgery for women.
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For what is worth, or not worth as the case may be, I believe this article ran back in Dec. 2011. It goes somewhat to the question of statistics.
Not sure of the date on this one.
http://www.thedailybeast.com/newsweek/2008/08/26/no-guarantees.html
And yet another.
http://abcnews.go.com/Health/story?id=118035&page=1
Barbara
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Tina337,
I can't resist asking - If you had it to do over, would you opt for no reconstruction or would you pursue DIEP or one of the other autologous tissue recons, or maybe fat grafting? I've looked into them all and just couldn't go there. The flap surgeries are so long and I didn't want to invade other parts of my body for tissue. The newer fat grafting procedure seems like it might be a bit less invasive, if you consider liposuction non-invasive. But still too much for me and still too new a procedure to be sure it's safe cancer-wise.
It's striking how hard it is to pin down statistics (there really don't seem to be accurate ones) either about how many women actually opt for reconstruction and how many women with implants are actually happy with them.
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Erica (Barbara) - I was on the fence about no recon at all and implants. I struggled with the decision for two weeks. I really was led to think I could easily remove them later without any deformity, as it wasn't something I saw as a long-term need. Without a doubt, I would have opted for no recon if I had known what I know now about implants. When I had my implants removed, I could have opted for autologous tissue recon, but I never wanted to involve any other body parts. I won't even do it to correct the damage done to my chest.
I am going to PM you to ask you a question.
Tina
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Tina, once I realized that to do the implants, they would have to pry my pecs off my ribcage first, I was skeeved.
Then I looked at as many before/after pics as I could find. I am kind of particular about how stuff looks, so for me to do recon, I would have to be reasonably sure of an esthetic outcome.
As far as I could judge, most of the nice-looking implant recons were done after skin-saving BMX, prophylactic or for very early stage cancers.
A lot of the flap surgeries look good too, but I am no more interested in butchering other parts of my body than I am in having silicone wedged under my pecs.
So until they come up with better recon methods, I think I will remain flat.0 -
Wow. Thank you for speaking up Tina. It takes all kinds, those of us who do not want recon, those who do, it really is an all walks of life sort of issue. At the same time, we all need to speak up and you did it beautifully, with all the right clauses.
I didn't need much to convince me of the simplicity of opting out of reconstructive surgery, and luckily for me, I was able to get beautiful results. So much so that I feel incredibly happy about my body, grateful that there are doctors who are able to do this sort of work, and also quite happy that my body is off limits to more surgeries. I feel like I am happier about my overall body image than ever before.
I spoke with my breast surgeon yesterday, she said that 20-30% of her patients opt out of reconstructing their bodies. I, of course, asked her where they were, because I want to see them. She said she would hook me up and suggest to the patient navigator to create a support group for half/flatties.
Anyway. I bought a bathing suit and cap yesterday and I am going to a breast cancer survivors pool exercise program at my hospital today. The suit is a simple, cute Speedo with cross the back straps, that is really quite comfortable. It is black with pink... I tried not to buy pink but the construction of this suit was the most comfortable of those I tried on.0 -
I Love the Flat stanley idea...lol! I am by no means shy about my booblessness. In Fact, the one great joy I have is taking the dogs outside Topless! At first, my neighbors stared, but now they are used to my scars and the wind feels so good on my skin.
On the identity issue (bear with me... I have been working non-stop so I am a little behind)...
When I was diagnosed, I had beautiful long red hair. For the past 18 yrs, I have been growing my hair out and donating it to make wigs for cancer patients. See... my hair grows at the most amazing rate. I can go from shoulder length to below my butt in 3 yrs, so I always took that as a message from My Best Friend (G*d) that I should do something useful with that hair. Also, I was large chested. And I am an old-school Femme. My Butch friends all assured me that no matter what, I would be just as femme whether I had hair and boobs or not- that my inner Femme-ness was not conditional on my outside. And they were right. Even now, with short hair and flat chested, I am still as girly as ever.
On losing the boobs... Before I had the surgery, an artist friend made me a plaster cast of my breasts, belly and neck. It's a beautiful work of art that is in my library. Yes, I mourned their loss, but not because I thought I was less without them, but because I was losing a part of me that I had not really thought about conciously since I was a young adult. I mean, they were just there... and now they would be gone.
I speak with a lot of women at work who have gone through the whole BC issue and I have only met one who was happy with her choice to reconstruct. Most I talk to had one removed and wish they had done the total removal. The ones like me, totally Flat, usually are older and wear their foobs all the time. They tell me I am brave, but I know it is a generational difference.
BTW... In case no one has told you this lately... you are all beautiful and amazing and I love each one of you!
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Ok, so here is my delimma. It may be a bit unique even in the world of recon/decon.
I have/had IBC. When it came time for surgery I opted for bilateral because I wanted to be flat and even. But, the original MX didn't get clean margins on the left side, so back for more surgery. After the left side re-excision, there wasn't enough skin left to close the wound, so I had to have plastsic surgery to remove a flap from lower right abs to cover left chest. End result is that that my torso is a lumpy mess, neither flat nor with boobs.
I have a couple of small "lumps" of excess skin under my left arm that are annoying because they rub against my arm. I have a poofy left side of my chest that is because it use to be the right side of my lower abs (to include my belly button which is now part of the left side of my chest). The right side of my chest is totally flat. The right side of lower abs is totally flat but the left side is poochy from belly fat and my uipper abs are poochy all the way across.
At the time, this whole mess was medically necessary and I had more important things to worry about. But now that I am done with chemo and rads, I'm thinking about whether to have more surgery to get back to being evenly flat (if that is even an option) or to just deal with the up and down landscape mess that I have now.
Does anybody know of any similar situations and how they turned out?
Nancy
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Mel- I think we need to confront people with comments and opinions....especially our good friends. Ask her why she is so concerned about how you choose to present yourself....it could simply be a "fear" thing (like...could this happen to me???). Sometimes when we are strong...have a strong personality....we make others feel inadequate. Don't ask me why...we are the ones walking around with no chest!!! Maybe that is the answer in itself....YOU HAVE HAD THIS BAD THING HAPPEN TO YOU...AND YOU STILL WALK AROUND LIKE YOU ARE OK....people just can't deal with that kind of strength...they don't know how to handle it...like we are in denial....little do they know....WE HAVE WALKED THROUGH THE FIRE....AND WE ARE OK WITH OUR BODIES...WE NO LONGER ARE HELD TO THE WORLD'S STANDARDS OF WHAT A WOMAN SHOULD BE! IT IS VERY FREEING.....
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I met a flat woman today!!! I was so giddy I introduced myself and within minutes we were hugging!!!
Next week we are going to get together to talk about life being flat.
I met a flat woman!! I am sure my jaw hung like a cod-fish but I was so excited.
She is younger than me and that was sad, but she rocked the look, just in a t shirt!!
I will update after we get together next week.
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Nancy, that really is a dilemma. Not sure what I would do. At the moment, I am SO not interested in ever having any more surgery. On the other hand, I can really see how what they did to you would be bothersome.
On the flat business, an old friend of mine came to visit. She had her 11 yo along, and when I explained why I didn't want recon, the kid said, "but why can't you justvstuff your bra?" I told her that was my tought exactly, lol.0 -
Momine...your interaction with the 11 year old brought the following to mind:
When I was getting ready for my surgery, there was a bc survivor who reached out to me and was helpful in many ways. She was all for recon, and loved hers. She had a really hard time wrapping her head around my choice not to recon. There were many things she said I should consider. Because I like her very much, and because she meant well, I listened. None were remotely persuasive to me. But there was one thing she said that was very meaningful to me. She said I should think about my 7 year old daughter and the message I was sending her.
Now, I know that she meant this in a way that I should be wary of my daughter having to see what she viewed as disfiguration. But that is not what it meant to me. It meant I should drop any thought of recon. Did I want my daughter to think that how I looked was more important than that I feel strong and healthy? (I know many women who have recon end up feeling strong and healthy, but it is certainly at greater risk after recon, in my mind.)
After my mx, my daughter wanted to see the scars. It was very hard for her at the beginning and she was horrified by the scar and by the drains. I was worried. But as time has gone by, she has become very comfortable with it all and she has said it is "just normal now." She continues to emulate me, trying to run like me, trying to eat healthy. She is definitely getting exactly the message I want her to get...women are more than breasts...and beauty is more than breasts.
I think that it is really important to consider the messages we send our daughters through this whole process. I am proud of what I have been able to send to my Kate.
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