Advice needed on opting out
Posted this on the reconstruction forum too but I really need advice. Had bilat mx 6/15/09 for bilat stage 1 IDC with immediate tissue extender placement. Insurance restricted my PS choice to only one MD who said I was not a candidate for flap procedure. One incision has not closed due to excessive fluid pressure and non-stop drainage. Extender must now be removed with 8 wk heal period before reinsertion. Had to rush into decision in order to get only PS available on board, but now I will have weeks to think and am terribly confused. Wondering if at 62, I really want to do go through with it. Really concerned about implant complications, especially contracture and leakage in light of looming gov't healthcare restrictions down the road. I can't afford to pay for replacements or for MRIs to check silicone stability out of pocket. Do not want to mess with prostheses and am surprisingly happy with the way I look now even though I had a 34D before but I still have the extenders in with 50cc H2O and I worry about what I read about concavity and lumpiness if I now opt out of reconstruction. Please share any experiences with opting out of implants or problems with saline or silicone implants you've had so I can read your experiences and decide what is best for me.
Comments
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Recon vs opting out is a really difficult decision. I'm almost glad that there wasn't a PS available when I had my mastectomy. After looking into the options and the possible problems (etc), I'm opting out for now. With that said, I'm not completely *happy* with my decision...
It is such a personal decision. I really admire those ladies who are comfortable in their own skin and have *no* issues with opting out. They are amazing!! I hope that in a few yrs, I can grow to feel that way too. If not, I'll do recon then. My body (and mind) needs time to heal and recon *now* doesn't fit into that...
hugs
Michele
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I had my 2nd mx July 21st. My surgeon would not do both at the same time. 1st one was Dec. 23rd '08. I was considering reconstruction for a moment then decided not to right now. I have too many questions about the different options available. Having had radiation on my cancer side can cause complications with every type of reconstruction. I saw the PS on Thursday and they called on Monday asking me if I had decided. My decision was to not decide at this time. I am happy with nothing after having been a DD since I was 14, I am now 44. I am still going to see another PS that does DIEP and see if that is an option. But I think I want to heal for a year or so and decide what I want to do and what size I want to be. I don't know how you can figure out size when a DD is in the way.
My chest is not concave and not too bumpy and I have only a single line scar. The first PS I saw that is a friend from high school said I had a good surgeon. I am not concerned about my image and happy to be free from the weight and bras. Maybe sometime in the future I might want something done but right now I'm just going to try different size prostetics and figure out what size I like. Having a double you can buy unweighted ones so they are not as heavy.
Best of luck with your decisions.
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I waited 4 years to have my reconstruction because I thought I would worry about the bigger picture first. Now after having the heavy, hot rubber piece on me for 4 years I am ready for the surgery. Tissue expander is not a picnic but it sure will beat the prosthesis. I am glad I waited but time to take on a new adventure.
Vicky -
My situation is very similiar to yours. I am 59 and in Jan '09 was diagnosed with DCIS and IDC in R breast and DCIS in L. I had bilateral mastectomy on 6/14/09 with immediate TE's. I was healing well and had my first fill on 7/7/09. I developed a hematoma on the L which opened up the incision and on 7/14/09 had exploratory surgery to "clean things up". I have never really healed well on the L and now, the incision is opening again so PS has scheduled removal and replacement of TE for 9/9/09. I have decided, along with my husband's support, to opt out of L TE replacement and to have R TE removed. I just wonder if reconstruction just isn't in the cards for me...I haven't told PS this yet. I'll call him tomorrow with today being the holiday.
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I opted for bilateral mastectomy as part of IBC treatment ... one was prophylactic. I then opted out of any reconstruction. Body had enough trauma with treatments. Besides, I liked the idea of being able to go braless for the 1st time in my life ... or choosing what size cup I wanted to be! I have B-cup prostheses for swimming, C-cup for professional and D-cup for "ooh-la-la!" Hubby doesn't mind either, he says he is in love with me, not the boobs! Sweet, huh! And the post-mastectomy bras are SEXY these days!
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hmb, I think it is so individual. Some of us just don't have a strong desire or the patience to deal with all the complications that can come with reconstruction. That's why I decided not to pursue it.
It's a major commitment and not for the faint hearted.
~elaine~
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I had a bilat w/expanders in March 2005, followed by saline implants 6 months later. In January 2008 I had them out. For a year I wore various prostheses, but for the last 8 months I've chosen to go without. I'm small and thin, so the tissue transfer surgeries wouldn't work on me. Sometimes I feel self-conscious, but my husband says he's proud of me and likes the way I look.
The implants never felt good. The expanders were horrible, but even the permanent implants felt heavy, and squished under my arms when I used my arm/chest muscles. Sometimes they really bothered me, like an underwire bra digging into my ribs. The last 6 months I had started getting muscle contractions, like a Charlie-horse spasm, that woke me up in the night.
I still have problems with my neck and shoulder muscles caused by the expander process. My chest isn't beautiful. The scars aren't straight, there's too much leftover skin, and it's a bit concave where the expanders pushed in my ribs.
But I'm alive and feeling more comfortable about myself every day.
sally
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I'm 50 years old, and I had a bilateral mastectomy in March 2008. For the foreseeable future, I'm opting out of reconstruction. I think my body looks sexier boobless than with the horrible, huge boobs that I had prior to bc. I have protheses that are proportional to my body's frame. I find them perfectly comfortable and wear them daily, even during exercise. Sometimes, I forget I have them on and wear them to bed! I have never been into wearing revealing clothing (I'm an LL Bean kinda gal), so that's not a problem. I'm just happy to have a sound, strong, healthy body again.
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I opted out of further surgery to let my body heal as quickly as possible. I, too, had rather large 38D - 44D breasts from 13 until last year at 50 when I had them taken off. I enjoy being braless and my neck and back are thankful. I had even had a reduction in the past to bring them down to the 44D so I had gorgeous breasts for my age. They never felt like mine though and I'm sure I'd feel that way about reconstructed ones. I go totally flat and think I look a lot thinner now.
Good luck with your decision. It is as individual as we are....
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I opted out of further surgery to let my body heal as quickly as possible. I, too, had rather large 38D - 44D breasts from 13 until last year at 50 when I had them taken off. I enjoy being braless and my neck and back are thankful. I had even had a reduction in the past to bring them down to the 44D so I had gorgeous breasts for my age. They never felt like mine though and I'm sure I'd feel that way about reconstructed ones. I go totally flat and think I look a lot thinner now.
Good luck with your decision. It is as individual as we are....
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Dear Radsec; This is my 2 cents worth. I deeply admire ladies who are confident enough to realize, breasts don't make the woman, the heart does. (((hugs)))
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Hey RadSec,
Just happened to see your post and I wish you well in your decision. If the thought of silicon bothers you, ask for saline. I had bilat with expanders and then saline implants which were in for 6 years. Dunno why it is that the expanders were hard & uncomfortable, but the implants were soft and worked out great for me. Looked great in a bathing suit, and bra shopping was a breeze; perfect fit every time... (My real boobs never did that for me!) Implants do give you an odd sensation when you use your chest muscles (raking leaves & sweeping felt wierd.)
Because my cancer came back (I'm 51 now) and grew under the implants, I decided to have 'em both out for good. Now I have silicone prostheses....when I have them on, they really feel just like the implants. But you are limited in what bras you can use, and since you have no cleavage, have to be a bit careful of low necklines, bending over, etc. So the prostheses are ok. Good to have the option if you want to wear fitted jackets, etc.
But you know what? All summer I was doing radiation and healing from that, so I wore t shirts or shells with an open button down blouse layered over it (to wear to work). I am quite concave and have some lumpiness too, so the loose shirt somewhat concealed that for me.
I thought I couldn't wait to wear my foobs again...but you know, going 'without' was just so comfortable. I'm all healed now, but am starting to just leave the foobs in the drawer again. They are comfortable enough but they are, well, so fake. It's vaguely amusing to show up with my chest on one day and without the next. Other ladies may have boobs, but I have OPTIONS! But honestly, people at work don't even notice. You have to decide for YOU. If you go without, I highly recommend the LL Bean pima cotton shells for layering... the neckline is just right for no worries and it's so nice and soft.
I don't post too often any more since I'm working again, so I am long winded when I do post! Hello to all the Fab Feb Furies! Hugs to all, so glad that Michelle is Done.
Sue
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I have to agree with starzhere -- after hearing the women in my support group talk about their surgeries and expanders I'm just as happy I didn't do reconstruction at 62. Didn't get around to getting a real prosthesis, instead I'm using a silicone breast-enhancer from Wal-Mart (at $15 a pair) on my full-dress days and going around lop-sided when I'm just hanging out at home.
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