Choosing nonreconstruction on the BCO web site?

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Comments

  • LindaKR
    LindaKR Member Posts: 1,577
    edited April 2013

    Thanks - hearing your opinions, thoughts, feelings, .....  really helps me.

  • CassDugan
    CassDugan Member Posts: 100
    edited April 2013

    Like Bobogirl, I like the idea of presenting photos but have not had much luck in locating appropriate images.  I'm going to have a lumpectomy rather than mastectomy, and it will include the nipple/areolar complex because I have Paget's with an underlying mass.  I don't want reconstruction, but when I expressed concern about the results, the auto-reply of medical staff is to route me to reconstruction.  I just want to know whether the surgeon can do a close that will leave things not looking awful.

    And yes, I absolutely agree that going flat (or flattish, in the case of lumpectomy) should be presented as an option.  At one facility (where surgeon recommended mastectomy), I refused the information on reconstruction.  The response?  An assurance it would be there WHEN (not if) I changed my mind.  The response was the same when I refused information on breast forms and again with wigs.

    I resent that traditional views of femininity are pushed so very hard.  My breasts don't define me.  My breasts don't define my womanhood.  I feel sorry for people whose minds are so limited that woman=boobs.  We are much, much more than that.

  • Moderators
    Moderators Member Posts: 25,912
    edited April 2013

    Hi all! Our editorial team is overwhelmed with appreciation for all of your responses, suggestions, and offerings!

    While we research, interview experts and write our core content, representing your view, we would love if those who have volunteered to anonymously provide pictures would begin sending the pictures they would like to share!

    Those who would like to contribute may PM the Mods, and we will respond with an email address to which you can send your photos; again, as requested, these photos will remain anonymous, but will be a huge visual help to others who are looking for information! Please note: not all photos submitted may be used.

    Thank you again for your efforts and we'll keep you posted on the progress on the updating of our content!

    --Your Mods and the Breastcancer.org Editorial Team

  • kathindc
    kathindc Member Posts: 2,042
    edited April 2013

    MT1, thank you for bringing this up, and Mods thank you for listening!  I was very lucky in the fact that I had a surgeon who respected my beliefs and didn't make me feel less a woman for them.  He did bring up breast prostheses and when I said I wasn't interested in them he said ok.  He then offered to give me an undated script for them "in case you change your mind."  It does my heart good to realize that the editorial board will acknowledge that living flat is an extremely viable option and not something to be brushed over.  I have learned from MT1's original thread that there is a whole community of us flatties out there.  My research prior to surgery left me feeling that there was just a handful of us.

  • KarenWS
    KarenWS Member Posts: 9
    edited April 2013

    Hi MT1,

    I like what you said, "Ask your surgeon about the fat under your arm(s), we call these 'dog ears' and is defined as fat is left behind, sometimes incisions end abruptly leaving a tab or 'dog ear'. A good surgeon will not leave 'dog ears' or 'kisses' under your arms.

    Remember, this is your body, you need to live with the results."

    I truly wish I'd known about this before my surgery Feb. 28. She left me with these dog ears, or as I call them, A-sized boobs under my arms. I hate it. Plus there are fat pockets under the incisions I hate as well. Would prefer to be flat. Is this fixable? She said she could "fix it." Or will I need to go to a cosmetic surgeon?

    Karen

  • LindaKR
    LindaKR Member Posts: 1,577
    edited April 2013

    So what is the purpose of the dog ears - has anyone asked their surgeon why they left that there?  Thankfully I don't have them, but really why?????

  • bobogirl
    bobogirl Member Posts: 2,777
    edited April 2013

    Linda, I could be wrong, but I have heard that sometimes BSs leave them in case you want future reconstruction.  Other times I think it could be attributed to a lack of skill.  Or perhaps these two things are not necessarily mutually exclusive.

    You know, sometimes I think it shouldn't be called 'reconstruction' at all.  That word implies so much.  'You are not put together, you are in a state of 'deconstruction,' your body is not finished, we are going to 'reconstruct' your breasts.  It doesn't seem quite right.  The word was probably chosen to make women feel better -- to make them feel reconstructed -- but as it turns out, it doesn't end up that way for so many of our sisters who choose 'reconstruction' -- either because they don't get the results they'd hoped for, or because the results -- however good they are -- don't mitigate what's happened to them as a result of this journey.

  • Starak
    Starak Member Posts: 536
    edited May 2013

    The fluffy stuff under the arms.   I was told by the BS, it would be there.  They will tell you it was there all along, just hidden by the breasts, sort of like our bellies that come out of hiding when the breasts disappear.   I think another part of the issue is that the breast or general surgeon's job is to remove breasts.  What is under the arm is not breast tissue and therefore out of the scope of what was approved to be performed.  When the tissue is no longer attached to the breast tissue it seems to kind of snap back and become more prominent.  Our bodies are 3D puzzles and a big part of the dog ears is how skillfully the surgeon knows how to resolve the 3D aspect of the problem.  Those who were really large add to the problem.  Then there are the center dog ears.  Many times the same 3D problem, extra skin for recon and have even heard from some fitters, left behind to hold down a bra. You will get a lot of answers.  I sometimes wonder if some of the bulges are attempts to preserve some of the mammary fold as a sort of landmark for later recon.  Or just plain thoughtlessness or sloppiness, take your pick.

  • Outfield
    Outfield Member Posts: 1,109
    edited May 2013

    Starak, I don't think all "dog ears" come from such a misogynist place.

    Imagine trying to sew together two pieces of fabric - one has a straight edge, the other a curve.  Or better yet, two unmatched curves.  That's what surgeons have to do when they "close" after part of the body has been removed.  Things like straight incisions to open up the belly are very different - the edges of the wound match up perfectly so can be re-approximated without any puckers.  That's not true of edges that are not from incisions simply opened and closed without change to those edges. 

    So with breasts, there can be big mismatches in the edges that are difficult to eradicate.

  • River_Rat
    River_Rat Member Posts: 1,724
    edited May 2013

    Outfield, I think you're right and that this is where a plastic surgeon would come in handy. My BS told me that it's difficult to tell how much to remove when the patient is flat on the table - that's how she explained what I have left. I believe that many plastic surgeons position the patient sitting up to get things just as they want. So I guess for the best result you might have a BS do the basic surgery and a plastic surgeon to do the "tidying up."

  • jksurrusco
    jksurrusco Member Posts: 5
    edited May 2013

    I've just been diagnosed with Stage 1 cancer.  I am morbidly obese and wear a 48 DD bra.  I'm already pretty sure I don't want to have anything to do with radiation if it can be avoided.  I had a son pass away from bone cancer and chemo was used in an attempt to save his life.  Radiation followed to control the tumors in his spine prior to his death.  I remember well what that did to him.  I don't want to go through that if possible.  I do like symetry, however.  If there is nothing in the non-cancerous breast, can you opt to have them both taken off instead of reconstructing the one breast?  Also, I have severe arthritis in my back and the only exercise I can do is in a pool.  My non-operative arthritis makes it impossible to walk or ride a bike or pretty much any other exercise.  Swimming is all I have and will not give it up.  I'm curious how others fill the emptiness in their swimsuit after the removal.

  • kathindc
    kathindc Member Posts: 2,042
    edited May 2013

    jksurrusco, I opted to have BMX instead of a recommended lumpectomy.  I was stage one.  Had no problems with my surgeon or my insurance company. You may need to to talk to your surgeon/insurance company as they can vary from doctor to doctor/insurance company from insurance company.  

  • indenial
    indenial Member Posts: 504
    edited May 2013

    Jksurrusco, I'm so sorry for what you've been through with your son. No mother should ever have to face what you have. Sending you BIG hugs. 

    Yes, you can opt to have both breasts removed even if one is cancer-free, and your insurance would cover it. Many of us choose this for various reasons, symmetry being a common one! 

    I've only been breast-free for a couple of months but buying a swimsuit was the very first thing on my list lol!! I was anxious I wouldn't find one so I went shopping right away. I ended up choosing a Speedo top because it went high enough to cover my scars and fit nice and snug against my flat chest. There are also mastectomy swimsuits that can hold a breast form if you decide to wear one. And a rash guard is another option for those of us who are flat.

  • jksurrusco
    jksurrusco Member Posts: 5
    edited May 2013

    I know I may look a little odd since I've always been big breasted, C cup in my slim teen days, but I really don't want radiation.  Thanks for your help.

    I don't think the Speedo will come in a size to cover my other over-endowed parts but, since I sew, I may come up with something myself that is comfortable.  As far as I'm concerned, I could swim naked but they frown on that at the rec center.Wink

  • crystalphm
    crystalphm Member Posts: 1,138
    edited May 2013

    Linda, I probably would not have had my second breast removed if it were a choice, I only took action when I realized i was going to get 3 lumpectomies and lose my nipple, so I saw no reason to keep it then.

    There are indeed risks for surgery, LE being one of them. I wore sports bras (38 C with the one breast) smooshed it flat :-) with no foob and it worked pretty good.

    bottom line is we do what we have to do. If you are not sure, then wait. No reason not to. I knew immediately after the guided MRI biopsy, 3 hours in the MRI machine I could never do this again...and you too will know when enough is enough. You wioll know the right time, if ever.

  • LindaKR
    LindaKR Member Posts: 1,577
    edited May 2013

    Crystalphm - thank you so much for your input, and the smooshing sports bra idea. I wore my prosthesis in a cami again today, ready to rip it off!

  • Momine
    Momine Member Posts: 7,859
    edited May 2013

    Linda, my surgeon left small dog ears in the middle, where the scars stop at the breast bone. He said they were for anchoring future recon, should I want it. He apologized for how they looked, and assured me he could fix them at a later date, if I wanted. They have smoothed out and are pretty much gone. I escaped the underarm fluff, and he said it was because I was slender. According to the surgeon, unless you are fairly skinny, it is very difficult to avoid. 

    I still don't really understand why it should be so difficult to get rid of in surgery, but I suspect this would be yet another reason to have a good plastic surgeon involved during the operation. 

  • Momine
    Momine Member Posts: 7,859
    edited May 2013

    JK, love your attitude, you will be fine. I opted for BMX for other reasons, so obviously I think it is a valid choice ;).

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2013

    Hi again all --

    We're still looking for volunteers for submitting pictures. Please PM us and we'll send you the email address to which you can forward your pictures.

    Thanks again for your help!

    --The Mods

  • Starak
    Starak Member Posts: 536
    edited May 2013

    Moderators, Do you have any photos that are already on display so we can see some context of how our photos might be presented or displayed.

  • FLwarrior
    FLwarrior Member Posts: 977
    edited May 2013

    How do you get to the pictures?  I have never been able to find them?

  • stride
    stride Member Posts: 470
    edited May 2013

    Regarding dog ears: I had a single mastectomy with the removal of a lot of skin to get a clean margin. A small piece of muscle had to go, too. The skin is stretched taut across my ribs. I had a great surgeon, and I healed well and quickly, but I think some people would have problems with the tight feeling. I wonder if doctors leave dog ears so the skin does not get too strained when you stretch your arm up. Does it help with range of motion?

  • stride
    stride Member Posts: 470
    edited May 2013

    Also, I have heard of people having skin around the incision die after surgery, so leaving a little extra might be helpful in case more has to be removed later. I would probably have needed a skin graft from some other part of my body if that happened.

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited May 2013

    stride,

    Just wondering whether the tight feeling you describe might be more due to some adhesions under the skin than to the tightly stretched skin. I had a double mastectomy and the skin was quite taut, particularly on the side that had had previous radiation. But then I had physical therapy with myofascial release, which really eased the tightness. Now, although my skin still appears taut, I have no feeling of tightness. I think physical therapy can benefit almost anyone after a mastectomy. There's a good explanation of all this on my non-profit website, BreastFree.org, by my own PT: http://www.breastfree.org/viewer.php?num=7

  • Ariom
    Ariom Member Posts: 6,197
    edited May 2013

    I had, and still have myofascial release massage done, and although my skin looks tight, I don't have that feeling at all. I do still have a bit of a "dog ear" but it has diminished a lot in the past few months. It certainly seemed to help with range of motion for me, as I didn't really have a lot of problem with motion, just the final part of a lift to get my arm straight up over my head. I only had one node removed.

    The thing I was most surprised about and grateful for, was that my surgeon continued my incision a bit further over onto my left breast. He explained that I had some sun damage on my chest that had puckered a little, so he decided to extend the incision so as to flatten it out. I also really liked that the flat upper chest also meant I had a smoother neck, just a bit of an unexpected bonus.

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited May 2013

    Ariom,

    I think you mentioned on another post that reconstruction isn't considered an "entitlement" in Australia as it is in the U.S., so perhaps many more women don't have it. Because of that, perhaps your breast surgeons do more mastectomies without immediate reconstruction so they're more attuned and have more practice at providing a good cosmetic result. In the U.S., breast surgeons often let plastic surgeons take over to provide immediate reconstruction or at least leave extra skin for future reconstruction, so they don't have nearly as much incentive or opportunity to leave a smooth flat chest after mastectomy. Just a thought...

  • Ariom
    Ariom Member Posts: 6,197
    edited May 2013

    Hi Erica,

    I don't remember saying recon wasn't an "entitlement", per se, in Australia. It is absolutely available to everyone, both with our Public system, and with our Private system.

    What I  probably meant to  say was, that, although I don't know an enormous amount of people who have had bc, of the ones I do know, most have not reconstructed, by choice. In fact my bc group of around 12 ladies, who regularly attend, ten of whom have had Mx, only 2 that I know of have reconstructed. The rest, go flat and fabulous, or wear prosthetics.  I don't know if those numbers are reflected all over Australia.

    You're absolutely correct when you say that our surgeons may, do more Mx without immediate recon. I have no idea of the actual numbers though. This wasn't an area I knew anything about, before my Dx, other than my Mother's experience back in the 90's, she never considered recon either.

    My surgeon came from South Africa, where he had set up breast clinics, and then did the same in London, before coming here to replace a well loved, but ancient surgeon, who was retiring from this large regional area. I was just incredibly fortunate to have him recommended to me. Otherwise, I would have gone back to Melbourne to one of the Cancer centres there, had I not found this surgeon and his great team. It was definitely serendipitous!

    He didn't bat an eye when I told him I didn't want to reconstruct, but did say that the door isn't closed if I ever decide to change my mind. He did warn me, that I would have a "mound", not a breast.

    A girlfriend of mine back in Melbourne, who did have recon, was mortified when she found out I wasn't interested. She tried to get me to go to her surgeon, who was Kylie Minogue's surgeon. Although I haven't seen my friend's results, I believe it is a magnificent job.

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited May 2013

    Sorry if I mis-remembered, Ariom. I'm glad you got a good result from your surgeon. 

  • Ariom
    Ariom Member Posts: 6,197
    edited May 2013

    No problem at all Erica. You've brought up an interesting point, though. I wonder if that is the case here.

    I do know that, in speaking with my group there is only one lady who isn't altogether happy with her surgery, but that is because of her "Dog Ear". She had a complete axillary clearance, and has had issues with that. 

    I'll ask about it at the next meeting.

  • bobogirl
    bobogirl Member Posts: 2,777
    edited May 2013

    Kylie Minogue's surgeon!!!?!  Something to think about.  Will this surgeon give my Kylie's bum as well?  :)

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