I look for other flat chested women. A rant.
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Thank you. Each post helped me reaffirm who I am now. kathyindc, you are right now that I think about it. The woman on tv was laughing waiting for her mastectomy, then looking all pretty months later reconstructed, but we saw nothing of her pain, and in fact I even wonder how she is going to be lifting those wedding gowns on and off such high bars as she heals.
TV really can play with my head sometimes.
And the other thing I forgot is reconstructed breasts are not the same as "real". I have seen reconstruction a few times and I was always very disappointed with what I saw and the number of surgeries to create this. I have alot of feeling (sensation) right now, I don't want lifeless breasts that do nothing but remind me of what I lost.
Thank you ladies for helping me get my head on straight again. I feel stronger after reading your thoughts, in fact, I went out and treated myself to a new infinity scarf....it makes me feel good about me.
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FLATITUDE all the way, Baby! I just saw The Burning Plain yesterday. I cheered like a football fan when the love scene with Kim Basinger revealed a mastectomy scar under her prosthetic. It was so awesome to watch a beautiful woman being sexy, scar, missing boob, and all!
Reconstruction comes up a lot in conversation with women who are finding out about my surgery. I don't want to discuss my choice with them because I'm still too raw. Frankly, I'm still waking up from the diagnosis, let alone the mastectomies. Hormone work IS TOUGH! My research tells me I'm barely touching the iceberg with only a few weeks of tamoxifen under my belt. Psychicaly and physically I am not ready to consider more cutting. I just swam 800 yds this morning and Tuesday morning. This accomplishment is HUGE. (Even though I used to swim 3000 yds twice a week.) I'm thrilled this might mean I can get back in a canoe before winter, which may mean I could race in the summer. NO WAY DO I WANT TO START ALL OVER WITH THIS CUTTING MY CHEST CRAP.
Some people wonder why I don't want bumps on my chest again. Those people don't understand me. Imagining my husband touching a fake thing I wear on my body or in my body makes me REALLY MAD. He and I have been together a long time and we've helped each other through a lot of things. One of the hugest gifts is accepting someone for who they are, including all their experiences. He gives this gift to me. I just can't see how reconstruction fits in that picture.
I love how I look with a loose shirt on. Right now, today, I love heo I look. SYTTD Lori would gasp and claim I'm in denial. Some one even said it to my face this week. As if I need to wear fake bumps and lipstick to be a whole woman! Yes, I do still feel a little lost about life after diagnosis and how to develop a cancer-free lifestyle for myself and my children. I just take it in small steps. Recon is not on my horizon.0 -
Barbara makes a good point about some have initially decided against recon, later reconsidered, went through with it and are very happy they did. Keeping an open mind and options open can be a good thing.
I sometimes find my own emotions so raw at times that I have figuratively slammed the door shut, bolted, locked and nailed it for good measure as to some options. Somewhere along the way, sometimes once, sometimes more than once, I feel the need to do my best to put all of my prejudices aside and re-examine each option with fresh eyes. So far, with recon, I pretty quickly come to the same conclusions as the first time and it gives me a sense of renewed peace that I made the right decision. As to prosthetics, I decided to look at the whole subject with fresh eyes and and at least "try them on." While I still do not deem them a necessity, I must admit they look pretty good and I am glad I have them. I like having options. Now I think I will just slide right by exactly how much of this stuff I have acquired..... The whole idea of the contact ones still creep me out and they still remain behind the nailed door. Some day I expect I may arrive at at point when I will be willing to look at them with fresh eyes and at least "try them on". Today is not that day. Still I find it healthy, part of my healing, sometimes even freeing to give myself permission to revisit the process and decisions. Just being out there with an open mind and heart, you never know what you might find or be inspired by. I'm speaking fashion here.
For those who have not seen the Say Yes To The Dress episode, Lori pretty early on came to the conclusion that she would not be happy with no recon so being a flattie was never to be in her future, though I had the impression that the PS's description of the various surgical options seemed to give her a moment of pause. Lori had the flap procedure where it is taken from the back. She makes one small comment that it was not easy and that was that. Very seemingly sterile and piece of cake. Between the TV version of Lori and Guiliana Rancic, it can all play with my head too. So in the re-review prompted by the show, I asked myself, with surgery on front, back and side, do you just have to drug yourself into a coma or stand up for weeks on end. Okay, I am a wuss, I admit it. From just the BMX, I couldn't sleep on my sides or put any pressure on my chest for weeks to a couple months minimally. It is beyond my comprehension to imagine not being able to put pressure on my back either. What do they do? Inquiring minds want to know, not to do it mind you, just to know.
Barbara
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I met a woman last month who had lived without breasts for 21 years and decided to go for bilateral recon at the age of 68.
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Greenfrog:
How interesting! Did she tell you what made her change her mind?
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I, too, saw that "Say, Yes...." episode. The first half brought back memories I had forgotten about happening at the beginning of this journey ... the anxieties and feelings with the diagnosis, the informing family and friends, the needlecore biopsy, the lumpectomy, the pathology reports, the anxiety of making the decision to have a double mastectomy even though cancer was found in only one breast. I cried for Lori ... and for me.
Then the show skipped all that I've been living/stuggling through since the mastectomies and know that she had couldn't have escaped. I'm sorry they "prettied" it up and had a seemingly "happily ever after after" ending. I realize it's hard, if not impossible, for anyone who has not lived through this to know the journey we're on. But to eliminate it completely is a disservice to Lori, to all of us, and to anyone who saw the show and then faces future cancer with limited information ... thinking recovery and reconstruction is a breeze, let alone the accepted/expected END of it.
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Starak, I certainly have had that sensation that needs the rubbing. It's a fairly simply burning, tingling pain for me. But what I think is most interesting is that the neuropathic pain across my chest is sometimes the purest form of empathy I have ever experienced. Or heard of. When I see something painful, or hear of something very painful, I get a jolt of pain - kind of like a bad electrical shock - right across my chest. So interesting, this connection between brain and body. Or maybe just brain and brain.
MT, Greenfrog, the hormonal stuff just sucks. I feel like my youth has been stolen. I too went from lactating to menopause over the first few weeks of chemo, then got an AI a while later. There's no reconstruction for that. I've got creams to deal with my now fragile tissues, am trying to keep my bones strong, all that stuff. But there's no getting around getting a lot older very fast.
This is about so much more than boobs. A local club adverstised a "Boo-bie Bash" with some of their proceeds going to something breast cancer related, probably "awareness" crap. I was so appalled. Cancer is that little bastard in the bushes that can get me again at any time, it's having my body quickly turning to that of someone 20 years older, it's having lost a year of my life with my little kids to feeling so bad from treatment I couldn't really function. It's not a cosmetic problem.
I wonder if some women's enthusiasm pursuing reconstruction is a form of denial. I wonder if any of them realize after they've done it that they didn't get back who they were. How possibly could they?
Oh, I write like that and feel guilty - I don't want to talk anybody out of reconstruction who wants it. I don't want their insurance not to cover it. I may think they're a little nuts for doing it, but I'm so far from mainstream anyway I think people are nuts all the time for doing things that most people do. Let your kid eat Cheetos. That kind of thing.
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Painterly - unfortunately I didn't get much of a chance to chat with her. I have met a few women who have had extremely delayed recon but she is certainly the longest. I think she had spent many years caring for her partially disabled husband - maybe it was her way of marking a new chapter in her life. I don't know - I am guessing.
My aunt's view about her reconstruction (10 years later) was that she was "buggered if she was going to leave this planet without tits." She cannot understand my reticence on the issue saying that if I'd had my front teeth knocked out I'd wear dentures or get implants so why the big deal about breasts. Hmm.
Outfield - the one godsend is that along with my surgical menopause and Arimidex-induced atrophic vaginitis comes a complete lack of libido. In imagining myself with breasts again I do imagine myself as I was just 4 years ago - baby suckling and full of life.
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Greenfrog, it doesn't seem right that you should have so much pain and discomfort this long after a BMX. Have you been seen by a physical therapist?
As for recon, it was my impression that in the US at least, they do implant recon after radiation, but I could be wrong on that. It seems to be the same here. When my docs ask about recon, they are referring to implant recon and I had massive radiation.
Bottomline is that I feel for you, and I really think you should be able to feel much better, physically and psychologically.The only question is what it will take to get you there. I love your aunt's comments. I don't feel the same way about it, but I can completely understand what she means.
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Thank you Momine. I am struggling a bit at the moment - the good and bad times come and go. The hormones (or rather the lack of them) are exacerbating everything. I think the answer to finding some peace with this is to stop looking for a happy ending - just accept my altered state and find contentment within it.
I have seen PS twice (a ghastly woman obsessed with reconstruction) and dermatology who tried to improve the hypertrophic scarring with injections but to no avail. What annoys me is that if I wanted recon there is a pathway within the health system for that - I would be passed through the sausage machine with no questions asked. But having scar revision is regarded as wholly elective so they won't do it. What I can't seem to get through to these people is that the appearance of the scarring really isn't the problem - it is the pain and soreness that I want stopped.
Interesting what you say about implants - I thought they had a very high failure rate with irradiated skin and so they didn't do them. My radiated side has no spare skin at all - I don't think they'd ever get the skin to stretch.
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Outfield, I also have symptoms more like you describe with stabbing and burning, but for me it is the part under the arm. My self diagnosis and suspicion is that scar tissue is attached to or encasing a nerve and that certain movement or pressures can set it off. The front of my chest is different and more like being caught in a vise or smooshed in the mammo machine. Even though a different sensation, I do suspect again that all of this is an interaction of between scar tissue and nerves. On my wish list is a session or two with a massage therapist who is trained in scar release techniques.
For the BMX among us - old timers this has likely already happened to you. For those still in the early stages, this is coming, plan on it. This was my week for follow-ups with the MO and cardiologist - jumping ahead, not to worry, I am fine. Okay, I think it is part of the human condition that some things are handled at the primal level. When you deal with certain things all day, you develop a spiel that just rolls out of the mouth. For those of us who have ever answered phones, it is that operating on a primal level that makes us answer the phone with the name of our prior company when we change jobs.
I adore my MO and his nurse. I think they are both excellent and so glad this is where I landed, but they too have their moments when the "spiel" takes over. I arrive wearing a lightweight snug sweater. No ifs, ands or buts about it - FLAT!! Been with him nearly 2½ yrs and am usually the first or nearly the first patient of the day. Go through all the normal stuff with his nurse, pleasantries, weight, review of meds.... and "... recent mammogram?" Dr. comes in, checks chest, underarms etc to make sure there are no lumps or bumps, goes to the computer, and starts running through the spiel, any pain, lumps, bumps, blood, yada yada ......mammogram? Fortunately a fellow sister on BCO had what I think is the perfect come-back. I hope she doesn't mind that I took it for my own - "No mammos to gram" said with a big smile and chuckle. We have a very good rapport and hearing NED or equivalent certainly makes up for any mention of mammograms. He said at one visit that I was likely the healthiest person he would see all day. Seems to start both our days on a good note.
This too was the week for the cardiologist. Doctor days are given flat days so once again dressed in a top that leaves nothing to the imagination just flat flat flat. The techs for the EKG and heart ultrasound, each went through the spiel, "....remove top and "bra", put on the gown open to the front.." Almost burst out laughing but let it slide without comment.
Barbara
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Greenfrog, my heart really goes out to you. I think on some level I even actually have some understanding from my experience with The Mutants dog ears. Yes the visual of horns or some other bizarre things growing out of the center of my chest might be considered a cosmetic issue and it was, but the constant pain and discomfort of having no choice but to strap down my chest every day was purely medical. It was also a reconstruction in a secondary sense as surgery was necessary to even have the option to wear breast forms.
As we are in different countries, I can only offer what I had to do here. In the US, our law states we are entitled to "all stages" of reconstruction, I just wanted one stage, the cleanup if you will. I adopted the language of "reconstruction" and used that language when I initially contacted the PS office for an appt. When the PS submitted to insurance for approval, it was submitted as "reconstruction" even though the only reconstruction was the removal of The Mutants. As you said there is a pathway for reconstruction. I used that pathway here. If I had ever let "scar revision" creep into the conversation I would have been dead in the water as not covered. I wonder if there is any way you can tap into that recon pathway to help you there.
Barbara
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Outfield,
I appreciate your mentioning the neuropathic pain and describing it as empathy, when you see or hear something painful. I have the very same thing still, six and a half years out. I decided that the nerve pain I had for weeks and weeks after my bilateral was so intense that when my mind is confronted with pain, it immediately remembers the worst pain I ever had, even worse than years of migraines. A pure form of empathy is how I will think of it from now on. Thanks for sharing this. I had mentioned it to my DH, but I hadn't thought to mention it elsewhere.
Dawn0 -
This empathic nerve sensation makes sense to me, given that my milk would flow when I heard a baby cry--even when it wasn't my own. Seems to me some of the wiring is still there. Before I started Gabapentin, I definitely had ghost 'let down' and nipple stim when I heard my husband's voice, even though the breasts were gone, gone, gone.
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Just so you know, Outfield: my profile picture is from 2.5 years ago, before the cancer even started to grow. I'm getting old fast right now! Here's a recent photo, if I can get it loaded.
When I mention the losses to my husband, he says, "At least you're alive." The only way I can hear that without wanting to lash out is to somehow manage to feel ALIVE by doing something, even if it's a little thing, that offers meaning to my survival. A day without that is sheer hell on earth. (for him, especially)
And I wanted to add about my choice not to reconstruct: I would much rather see the resources that are focussed on capitalist aesthetics channeled toward understanding what I've been exposed to that caused the cancer. I want to know if my kids were exposed to it, too. And, whether they are STILL being exposed to it. I want ANSWERS more than I want boobs!
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Greenfrog, I know the NHS can be a bitch to wrestle. If that PS is bent on recon, can't she at least give you a proper rundown of the options, failure rates etc?
Is there any way you can see a physical therapist who specializes in mastectomy patients? Mine was really wonderful and helped both my mental and physical state.
Oh, and I hear you on being hormone-deprived. That is seriously funky. last month I had a couple of weeks outright depression and it was absolutely no fun at all. However, if it is ongoing, that too is a medical issue and something some fool doctor should help you with. Apparently effexor can be helpful.
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Thank you Momine and Barbara - your kindness means a great deal.
You are SO right about the recon pathway idea - I should be more canny and play them at their own game, using their own language. One of their arguments against scar revision was that it can happen all over again so it would be a waste of time. But then, following that logic, why won't it happen with recon?
The consultant dermatologist was terrific and wrote to the PS suggesting they work together on finding a solution. The bitch-troll PS responded by rolling her eyes and said it was "an idiotic idea". And that was that. The arrogance of some of these medics is breathtaking. I did lodge a complaint with the hospital but apparently in the grand pecking order of medics a PS trumps a dermatologist.
I ended up walking away from the whole situation - sick of beating my head against a brick wall. But nothing is going to improve unless I make it happen. Time to beef up and get stuck in again I think. Thank you for listening.
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Greenfrog, sounds like a plan. Also talk to your general practioner and see if he might be able to refer you to someone else using some kind of excuse. I am thinking a doc who works with war veterans or something, in other words, a medico who might have encountered painful and bothersome scars in need of fixing.
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Greenfrog, I wish I knew your system.
I had a problem with what I think was a monstrous axillary cord (see this if you're not familiar with those - http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm) and saw two fabulously unhelpful PS's here. They both ran reconstruction factories. One would not even help me. Then I thought a little bit about my problem, which was an uncomfortable end of range of motion -felt like a dog yanking hard to the end of a chain when I raised my arm - and saw a PS who had specialized training with burns. He also does recon, but he's not a recon factory and he was (he just left) one of the burn surgeons at our local academic center. His approach was totally different, and he helped me out.
I don't know if that can be translated to your system at all.
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Wow - this is a great topic. I never planned on reconstruction, but checked it out, just to see my options. My family was also against reconstruction, every last one of them! Anyway I went to a conservative PS and he said it could be done, but that I was not a good candidate for implants at all because of scaring, thin skin, etc... I did a lot a research and found that really the only surgery that would work is a DIEP, there's only one surgeon in the state that does that, after more research found a woman PS who practices in LA, NC, UT & IL, and if I were to ever make that huge jump and commit to 4 surgeries I would not feel comfortable with a doc with less experience than she has. I already have so many issues, I can't believe that having a boob would be worth any more.
I've been considering a prophylactic MX because I'm so lopsided, also because of the huge difference, I usually wear a prosthesis out and about. I've found one that is really comfortable (light weight) and instead of bras, have camisoles with pockets. I have a question for those of you who've had prophylactic MX - do you lose the feeling on that side too? have any of you had nipple sparing MX? does the nipple have feeling?
Next - I had to have a couple of punch biopsies done on the MX area because of a strange rash only on MX area, DX was radiation recall dermatitis, but it caused my truncal and arm LE to immediately swell, more than it ever has in the past, and three weeks later still having trouble keeping it under control - if two little punch biopsies cause such a mess, how can reconstruction not trigger the LE?
You all are so encouraging and interesting. I got a lot of really good information from you.
Linda
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Outfield, that is interesting about the burn doc. That is why I suggested a vet doc. I know that painful scarring and other amputation complications can be a real problem for veterans. Doctors who work with them have to take it seriously, because the scarring can make it difficult to wear a leg prosthesis, for example.
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I saw this article this morning. This one sentence really ticked me off.
" Many have mastectomies as part of their treatment but, unlike Stronach, never go on to benefit from reconstructive breast surgery."
http://www.huffingtonpost.ca/2012/11/02/stronach-opens-up-about-r_n_2065758.html
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Linda, I liked your sentence about having so many problems, how could a reconstructed boob make things better? Indeed.
Just to let you know, I have very much sensation in both my mastectomy sites. in fact, too much sensation. The prophylactic side as well as the cancer side, I could feel 1 hair against my skin. I have no idea why, I think "numb" would be easier to wear foobs.
But I feel everything....which is nice for me, in a sensual way...clothing against my skin.
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Check this one out - http://www.foreverfemme.org/ A friend of ours had it on her FB page that she had helped promote this and was very pleased with herself for helping with the BC cause.
Here's their little blurb -
Why Forever Femme?
1 in 8 women will be diagnosed with breast cancer (National Cancer Institute). Post-breast cancer reconstructive surgery has tremendous impact in restoring a woman’s positive self-image and well being, but research reveals that 70% of women - who would have opted for reconstruction -still do not know their options.
While legislation mandates insurance companies to pay for reconstructive surgery, it doesn’t help women with their deductible or co-pays, which can amount to $10,000 - $20,000 or more. It also doesn’t pay for household expenses during recovery time, either, which can be up to 6 or 9 months. During this time, patients are the most vulnerable. They often have difficulties with daily activities such as personal hygiene, cooking, or taking care of their children.
Harvard trained board certified plastic surgeon and Founder & CEO of RESTORE, Dr. Michael K. Obeng, seeks to help these patients through a unique initiative. Forever Femme is an extension of Breast Reconstruction Day (BRA-Day), in partnership with the American Society of Plastic Surgeons (ASPS). 50% of the funds raised by Forever Femme will be applied to the Plastic Surgeons Breast Reconstruction Awareness Fund (501 c 3) to raise awareness about their reconstruction options, and the remainder will stay in our own community to help women in need of expenses for insurance deductibles and household expenses during their post-reconstruction recovery period. For more information visit BRADayUSA.org.I was a little snarky in my response, but I believe it went over her head, here's what I said - Hopefully they were raising money to go to research to cure breast cancer, or stop it before it starts! Thanks for contributing to the cause Jen. There are too many groups out there that are caught up in the culture of cause marketing, they've made it about the boobs and not the women or the cancer.I don't know why it p.....ed me off so much, but it did. Thought you all might appreciate it.Linda0 -
Thank you Linda!! Your posts are very helpful for me!!
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All in all, I really think it is women who set the overt and covert standards of personal appearance, trends, etc. At some point in recent history, gentlewomen threw their corsets out. I like sneering at my bras that sit useless, lifeless in my drawer. I LIKE it. I think it'll catch on, especially given the all difficulties around reconstruction and prosthetics.
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Linda, seems similar to the opinion in the one that I read. Is there some recon movement going on out there? Are we flatties threatening the livelihood of recon surgeons?
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Pip, the sentence from your Huffington article that leapt out of the page for me is: "The option of reconstruction allowed her to 'get up and get dressed and be normal, and not have to be confronted by the mutilating scars on my body every day.'” -Marla Shapiro http://www.canada.com/news/Belinda%2BStronach%2Bpushes%2Bbetter%2Bcancercare%2Boptions%2BCanada/7486011/story.html
Despite my own personal preferences, I can really empathize with women who feel this way. I'm glad there are women out there who are happy with their reconstruction. Choice is so important!!
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Momine & Outfield - excellent suggestions - thank you. I will spend some time tonight trying to locate PS who operate in a less cosmetic sphere. I remember when I first met with the PS I was referred to (through the NHS) - I googled her when I got home and was horrifed to see the website for her private practise. It was everything I despise about cosmetic surgery - idiotic ideals of what allegedly makes women beautiful offering every kind of bonkers cosmetic surgery you can imagine. She also looks like a Barbie doll and clearly enjoys nips and tucks herself.
I am going to find myself a scar specialist - to hell with the breast element of this.
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