I look for other flat chested women. A rant.
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http://www.flatandfabulous.org/#!non-reconstruction-after-mastectomy/c4gw
Hope that makes it linkable.
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excellent info and article. Very grateful that my surgeon, a woman, said she would make the same choice if she was dx with BC.0 -
Very nicely done. I think a lot of people are talked into reconstruction and have no idea of the many things that can go wrong. When I see women having 6 surgeries, I wonder if they were aware of that possibility when they made their decision. Someone needs to do the statistics for how often reconstruction is complicated and requires many surgeries.
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I planned with my original female surgeon to have BMX with no reconstruction - she was very supportive. When she broke her shoulder the week before my surgery, the "Director of Breast Surgical Services" stepped in to cover my surgery. This surgeon has an excellent reputation. However, he was determined to convince me that I needed TE's. He even went so far as to call the Plastic Surgeon that I had visited to discuss DIEP to "order" him to reschedule his surgeries so that he could be at my surgery to implant TE's. Both the Breast Surgeon and the PS responded to my email re-affirming that I did not want reconstruction or skin-sparing BMX (my margins were not clear on the skin side above the nipple). Yet, I clearly experienced a skin-sparing BMX (described as such by other medical professionals looking at my chest) which left excess skin wrinkled on my chest as well as dog ears under my pits. I received this treatment at an internationally famous cancer center at the hands of the "director" of the department, an excellent surgeon who clearly just believes that women should have reconstruction. He said that TE's were "protocol" in his program. He could not fathom that an educated woman would choose not to reconstruct. He told the PS that I was "confused". (Luckily, my husband has been by my side through all of this; otherwise, I might have thought that I was unclear.) I am fairly certain that the surgeon believes that he did the right thing because I will come to my senses and need that skin for reconstruction. He has glowing reviews (perfect scores) online. Before my original surgeon's accident, it never occurred to me that my breast surgeon would think that he had the right to determine whether I would have reconstruction. I believe that this freedom to be flat is still not mainstream.
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Daisylover, that's a terrible story. I believe, that behavior is bordering on criminal, how dare they make that decision, when you've stated exactly what you want.
Unfortunately, It isn't that uncommon, either. I have heard women say the same thing happened to them and they are left with a chest that they aren't happy with and have no choice but to just put up with it, because they don't want to have another surgery to fix it. Some even said they would be charged a fee to remove the extra skin and Dog Ear that was intentionally left by these clueless surgeons.
I had a dog Ear, but I didn't blame my surgeon for it. He explained what it was, but my problem was, that although I hated how it looked, it also felt like it had a bunch of cut nerves inside, that irritated me. I put up with it for some time and then had it removed over a year after my Mx. It was the best thing, for me, as I really didn't know just how much it irritated me, till it was gone.
I hope this document is read and understood, by these surgeons who have such a pathetically skewed, or financially motivated, interest in everyone reconstructing.
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daisylover, that is terrible, unbelievable even (except I DO believe you). So sorry to hear of the garbage treatment you received.
Well done all those who contributed to the document.
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daisylover-how awful and unreal that the surgeon did that.
I loved the document!! I've posted about this before, but I personally had a failed reconstruction attempt and was not given adequate info on the possible problems that could happen. I didn't even know what it meant to not have reconstruction!
I sit here today with lots of extra skin, dog ears and just a horrible looking chest. I've been told by my current PS that recon will be very difficult for me due to all the infections, scar tissue and radiation. I'm leaning more and more to not doing recon....but I want to get this extra skin off. I wonder what that would be like?
Anyway, praise to the ladies that made the choice to not recon and were not swayed by public opinion or pressure from medical staff.
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Daisy, that is a terrible story! What an @sshole!! That is worse than my problem: where I didn't discuss recon, cuz I knew I didn't want it, and he assumed that I would recon! So he left excess skin. I blame myself, partly, because I did not discuss it with him. If I had been on these boards before surgery, I would have known to be very clear about it. A dog ear, and a bit of skin is one thing,,, it's not easy to always tell when you are laying down how much skin to be left,,, but huge excess skin "for recon" is another matter.Tang: I have been told that removing the excess skin is fairly minor,, a drain would be needed, but one week from work should be sufficient. I was planning to do it, but then I got Truncal LE, and so I have been hesitating about doing it,, cuz I'm afraid of making the LE worse. Can you consult with the PS to find out what would be involved for you to go flat? That way you know the score and it will help you with decision making.
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I do like "flat and free" and "fab". I would definitely buy the shirt. I do appreciate everyone's support. Thanks everyone! All who post on this site regarding reconstruction experiences have given me knowledge and courage. Really, I can deal with wrinkles and dog ears. I just sincerely hope that in the near future ALL breast surgeons will listen to/value/be motivated by their patients' desires and needs and not their own personal views, when it's not an issue of medical necessity. It should be part of their training. Seems sad that the document even needs to be written? Cancer is cruddy enough without having to deal with cultural image issues. Perhaps the celebrating differences push in schools will change attitudes in the near future!
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Maybe a few lawsuits would convince them to listen.
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Count me in for that, Wren!
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daisylover how so VERY awful. I just can't even begin to imagine. Yes the "freedom to be flat"0 -
Yay Wren! Or maybe the mention of one, if they are being pushy about their own reconstruction agenda!
Really and truly, these Doctors just have to get over themselves and realize that we know, what we want and they are there to facilitate! I was grateful to mine, when he didn't try to influence me in an way, but simply said "The door isn't closed, if you happen to change your mind!"
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Onco, Excellent idea. DD is a surgical tech and she said a woman came to show them how her mx scars looked after healing. I guess watching the first mx is more traumatic than having one. She thought having the woman show them it wasn't the end of the world was a good idea. Perhaps students could look at a flat woman and realize it's not that big a deal. Not everyone is handed jugs. My MIL said she wore an A cup while nursing and nothing any other time. How I envied her as a bra cut into me.
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Nel, Thank you your your empathy. I really felt somehow devalued by the experience. Better now!
Wren and Mags, You are so buoyant. Where do you get all that energy?
Onco, I really like your suggestion. I think that an excellent surgeon at a cancer center affiliated with a University ought to be able to offer advice on how to initiate/structure a program. ( Probably not my surgeon
) I would love to share my "expert advice"! There seem to be a few women on this thread who might have the energy to launch this. I am not sure why I suddenly needed to share my experience, but you have ALL been so kind and supportive - THANKS. You are all FABULOUS.
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Daisylover, you gotta be joking! Energy? Me? I am so low energy it's unbelievable. Even before BC, I stayed pretty much at home. The last ten years I had my business I ran it totally from home, and since I retired, I've become more and more housebound, with arthritis, degenerative disc disease, fibromyalgia, chronic fatigue, and a host of other maladies, now BC. But hey – at least I can write energetically!
By the way, my cousin (77 years old, lives with us, takes care of me) said she overheard a conversation between the surgeon and the assisting doc (who was my friend) about leaving enough skin for recon. How many times would I have had to tell them no before they heard me? And I had two witnesses. But what if I don't want a second surgery to make it right? Why do I have to live with the results of someone else's screwup? It's not like it's removing a splinter or something, it's major surgery!
/End rant
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Mags, you definitely write energetically! Wow, you have a lot to deal with... Your cousin must be the energetic one? I did see you on the Hermit thread. I am a hermit by choice as well. Rant away. I feel like we need to open our windows and shout, " I'm as mad as hell and I am not going to take this anymore!" (movie "Network" - never saw the movie but remember doing this at college - it was a scheduled cathartic midnight scream during exams.) My chest looks like the skin of a little old lady... Oh well. Maybe I'll have it "fixed" after I am no longer immunocompromised? Will you have yours fixed? Or did you already?
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Right now I just want to get through treatment. Don't know if I'll ever do revision, I just hate the thought of unnecessary surgery, which is another reason it makes me angry. It really looks like my triple Ds were just deflated, and now they're just laying there flat as a pancake. I thought I'd be rid of underboob sweat, bit I still have underboobs. Dang!
Yes, my cousin is the energetic one. I get tired just watching her. Everything she does she does vigorously. Stirring coffee, feeding the dogs, cooking... She leads a class for widows at church, sings in two choirs, helps out with flowers and stuffing worship folders, takes a lady to her doctor, and takes care of me in her spare time. She loves to shop and goes shopping somewhere every day. We just give her a credit card and she makes sure the cupboard is full. If there is a zombie apocalypse, we are set for at least a year.
I joke, but I love her dearly. Our moms were sisters, and after her folks passed away she came to take care of me after my hysterectomy. She had taken care of her folks for years, they were in their 90's. She is a caregiver at heart. DH adores her like his own mom, and I know if something happened to me he would take care of her (and vice versa).
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Part of my reason for choosing no reconstruction was to just "get through treatment". I am mostly wiped out these days. As time passes, the excess tissue seems to matter less to me as well. Headed to PT now to deal with scar tissue and truncal lymphedema. I truly look forward to the day when BC treatment is in the past. My daughter has Crohn's Disease and will never be able to say that. I am learning to show others more empathy.
Family is the best. My mom had 2 sisters. Their kids are in Ohio, the state of Washington, Alabama, New York, and Massachusetts. I miss family gatherings. With 2 of the 3 sisters gone, the cousins don't gather very often. My BC has brought some of my family together recently - my siblings who were not speaking have reconciled. There are benefits to the fear of cancer. Family members seemed to re-evaluate their priorities fairly quickly.
Have a serene day, with no unexpected hassles. If your cousin wears you out, nap. A good nap can fix a lot of issues, physical and mental.
Do you ever catch people (who know about your mastectomy) staring at your chest? Now I initiate the hugs. I miss spontaneous hugs. Small things...
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I welcome the stares! But I've had very few. I think people stare when there *is* something more than when there *isn't*.
My cousin is off wearing herself out. This morning it's church, helping with flowers and worship folders and whatever they ask, followed by probably Sam's and groceries. Like we need more. Bless her heart! We were supposed to be decorating the tree this week, DH put it up last weekend but didn't get the lights down from the attic, so we've had a reprieve. It'll get done eventually. Meantime, I'm just hanging out in the recliner, drinking coffee and listening to music.
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Mags, can picture you in the recliner, but what music are you listening to?
Therapy was great - she's breaking up the scar tissue and while it's a little uncomfortable, it makes me feel so much more like myself afterwards... difficult to explain. I think that PT should be a given after MX. I think that there is a shortage of therapists trained in this specialty, though... If anyone knows someone training in PT, suggest this focus!
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Had BMX this morning. Less pain than the pressure from the cancer !
Dr at Hopkins did an awesome job. Neat flat incisions. No dressings. I peeked under gown and rather than be stressed was ready to throw a party. Such a relief the killer boob and it's mate are history.
The lady at the cami shop said some doctors order a compression bra. I just hit the cami. Do the help you heal flatter or are the just for swelling?
I'm SO happy not to be bothering with expandeders and all that painful stuff. Can't wait to heal so i can swim again
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YAY! Glad to hear from you, Chloesmom! Glad that you are doing well.0 -
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Hello Chloesmom, so glad you're on this side of it now! Sounds like you feel just like I did after mine, no regrets! Take it easy and let your body heal, it is very easy to overdo it, because you feel so good, but your body will let you know when to slow down and take a nap!
All the very best and let us know how you're getting on.
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Chloesmom best wishes with your recovery. XXX
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Speed bump last night. Drain stopped working at 10 PM
Site and armpit got giant hematoma. Looked like I had my boob back
Had to take urgent trip to OR to replace drain am hour later. So happy they make you stay overnight here.
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