Help! Exchanging silicone TE for implants to DIEP?

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gracewriter
gracewriter Member Posts: 21
edited November 2018 in Breast Reconstruction

We all have already been through hell and back because of the cancer, surgery, and trying to figure out whether to go flat, implants, etc.  I did know I didn't want silicone because of the problem with them back in the day.  I'm 54 years old and remember all that.  I also didn't know about other choices like using your own skin.  So I figured I'd just have them removed and go flat.

MY BS said she only worked with ONE PS.  So the PS showed me only pics of DIEP and taking skin off leg or belly or but, I got kind of excited with the prospect of having boobs again!  She mentioned nothing about TRAM FLAP.

Then she told me she only does silicone breast implants.  Period.  If I wanted any other type surgery I would have to look for someone else, meaning (to me anyway) I'd probably have to find another breast surgeon too.  She also didn't mention silicone had a shelf life and I'd be having them replaced periodically for the rest of my life.  She said I'd be in my 80s and have "perky" breasts. 

Of course at the time the only thing I could think about was getting the cancer OUT OF ME as fast as possible.  She asured me silicone was perfectly safe because they did "studies"and not to worry.  I signed whatever paper she wanted for silicone implants so I could get on with getting the cancer out.  I was NOT in an emotional state to make such a big decision about reconstruction.

So I decided July 4th to make the decision if I'd go saline or silicone.  Now I realize after reading about the horror stories of the leakages and resulting illnesses just like back in the 70s and 80s are popping up all over the place--but you have to know where to look to find them on the net.  Even the saline has the same problems because they are encased in silicone bags. I want to get these things out of me stat.

I don't have the permenant implants yet. Just the expanders and they are driving me crazy with pain front and all across my back and now my neck is starting to hurt.  I've only had the TE in for 2.5 months.   I cancelled my last apt with PS and made an apt with another PS across town.

I already lost 20 pounds since this process began back in March.  I'm now 144lbs at 5'6.  My goal and normal weight is 125lbs and my normal cup size at that weight is a size D.

My stomach is really flabby from being 185lbs for the last 15 years  In my humble opinion my gut has enough fat in there for at least a couple of A cups which at this pint I'd be thrilled with.   I don't have stretch marks on my belly but if I get on my hands and knees it looks like a deflated bolloon hanging down there.  There is still 25lbs worth of fat on this body I need to get off of me but not all is in my gut.

So I don't know if I'm a candidate for a DIEP which my insurance will cover but I'm guessing at the time I saw the PS I was a candidate because I was 20lbs heavier and I'm too afraid to start cutting off muscles.  I think I'm going to need them intact for old age.

I"m finding out a lot of BS & PS are actually good sales people guiding you to what they really want to do and what might not be the best choice for you personally.  I don't think she lied to me about the dangers of the current "silent epidemic" with implants.  I think she's just too lazy to do her own research.

Anyway, it's almost like finding out you have breast cancer all over again, I'm going through a lot of anger, sadness, yet another loss of boobs, depression and feelings of betrayal by both my BS and PS.

I called my insurance company and complained about my PS and told them I was NOT informed about periodic replacements and the dangers of silicone leaking into your body, or the actual percentage rate of leaking.  I was the one who asked her about leaking, and she said, "well yes that can happen."  No percentages offered, no mention of shelf life and more surgeries to look forward to for the rest of my life.  All I got was "look forward to perky boobs in  your 80s."  Who gives a crap out having perky boobs at 80?

My two biggest fears at this point is I am not a candidate for DIEP even though my gut is still huge and sagging and will end up with some really ugly scars  on a flat skinny chest.  I've seen the pics. of enough flat chests and wonder why can't these plastic surgeons do a better job on the scars for women who choose to go flat???  It's not just the scars that look bad it's all the odd shapped bumps around them.

Of couse my husband was overwhelmed when I told him a day's worth of information I came across from real women on the net in the hour just before he had to go to work.  He accused me of over reacting.  That really hurt.  He wanted to see studies and scientific evidence.  I couldn't believe those words were coming out of his mouth.  We are both progressives and know about who owns the media and why people in this country are under informed and why it is so very important to do your own research on any given subject from any "authroity" including doctors.  You have to go and look  up the scientific studies and research on anything that effects your life.  But seeing two forums with 10,000 REAL women (that's why I trust this forum) complaining of horrific symptoms was good enough for me.

So I went to work that evening researching and sent him all kinds of studies and evidence.  He's devistated.  He does not want to go through yet another surgery not to mention I still feel like a 90 year old woman who has a difficult time just getting from the house to the car.  I am really fatigued all the time which is one of the symptoms mentioned at the two month mark with silicone. I'm not saying it's the silicone that's making me fatigued, maybe it is the shock to the body of the operation.  Still, there's no way of knowing that until I get them out.  

So my husband is still doing the grocery shopping, and running the house while I sit in this hospital bed in the midddle of my living room while he and the kids cook all the meals. I did start driving a few weeks ago, thank god.  But the thought of going for a walk or grocery shopping is out of the question.

I asked the tech at the new PS office shouldn't I be feeling a bit better now?  I can't even take short walks without getting fatigued.  She said it sounds like your body just doesn't like having all that gear inside of you.  Others tell me "Your body has been through a lot and it is expected." 

Sorry, I'm not buying it.  I've been doing nutrient dense foods and supplemenmts heavy on minerals and vitamins, drinking nearly a gallon of water a day.  As a result my wounds healed at warp speed and my hair and nails are growing like crazy.  My nails are hard as a rock.  They used to be more brittle and flexible.  This is always a sign of good nutrition.

Does anyoe have any experience or advice about "changing horses in the middle of the stream?"  My insurance company told me I'm covered for DIEP and other reconstruction.  But the only thing I want is either a nice perfectly flat chest, I don't mind having mastectomy scars, I just want symetry and total flatness, I don't want to be concave or I want a DIEP.  Those are the choices I've narrowed it to.

Does a DIEP need chest expanders?  Cause I already have those  with the bag inserts.  Do you think I'm "too skinny"  for a DIEP at 144lbs and 5'6 (if I slouch I"m 5'.5")?

I'm not an Angelina skinny, but I'm certainly not thin.

Any thoughts or advise would be greatly helpful.

I'm totally freaking out until I get to see this new PS on Wednesday.  I sure hope you all come on this site on Sundays.  I'm feeling quite alone and frightened and very sad about how depressed and angry my husband is acting.

I"m so angry with myself for not having done ,my own research 1st and I'm usually a research fanatic!

Thanks for listening.  Sorry about all the typos and spelling errors.  I can't find the spell check on this board.




Comments

  • jacee
    jacee Member Posts: 1,384
    edited July 2013

    I so remember the frustration of having to make decisions before I felt I was ready. I'm not sure I understand what surgery you have already had....lumpectomy? mastectomy? However, DIEP can be done immediate or delayed. If you are going to have radiation some PS will actually put TE's in before rads, then do diep afterward. so, the TEs shouldn't be an issue if you choose to have DIEP.It sounds to me as if you have enough tissue.

    I traveled for my DIEP.because I wanted the best surgeon I could find. To me, that was Dr. Massey in Charleston. Even if you don't use her....check out her website. www.drmarga.com. It has a wealth of info about the different surgical procedures. my husband finally calmed down when he read some it.

    I actually emailed her pictures, then did a phone consult. Most of the top surgeons can give you an idea whether or not you're a candidate by looking at your photos.

    Read the NOLA in September or Charleston Bound threads for tons of DIEP info. Sme of the top surgeons performing these surgeries are there. When my husband saw how many women were traveling to these Dr's to have surgeries, he finally got it!!

    Breast cancer takes its toll on our husbands, too. My husband was so tired of seeing me in pain, and sick, and losing hair, and just notmyself. Not to mention....no sex!!!! But, like they say, this is a marathon...not a sprint. Hopefully each week brings better days and more healing. I am now 2 years out from my last DIEP surgery, my breasts are beautiful, my tummy's flatter than it has ever been and life has returned to somewhat normal.

    You are doing the right thing in researching. Good luck on your appt. Wed. Hugs!

  • gracewriter
    gracewriter Member Posts: 21
    edited July 2013

    I had a double mastectomy and already they put in stretcher bars with bags.  I've had three fills so far.

    I can't stand these things.

    thank you so much for writing me.  I was crying the whole time.  Finely someone understands me!

  • SheChirple
    SheChirple Member Posts: 954
    edited July 2013

    I had bmx with TE and followed through with exchange. I did NOT want implants. However three PS told me they were a better options for me than TRAM or DIEP. After my exchange I went through multiple complications and ended up having one implant removed. Then my PS and I had a long talk and agreed to repair the lost implant by giving the DIEP a try.



    I had lost over 100 lbs in the two years before my Bc diagnosis and had plenty of skin flap but not much by way of fat. He expected I would be a large B or small C.



    I had my stage I DIEP on May 24. It was the toughest of all my surgeries. I am 6 wks post op and still in much pain still in throws of recovery. There have been days I wonder if I did the right thing. However from all indications my surgery was a success. I am happy to have the implants out and trying to patiently get through this DIEP process.



    I don't know if any of this helps. But I am with you and support your decision to change from implants to DIEP. If you have any questions I will try to answer.



  • jacee
    jacee Member Posts: 1,384
    edited July 2013

    Grace writer....you will find many,many women here who can relate to your story. So, stick around and you'll have plenty of support whatever decision you make. I'm glad to be of help. Like shechirple alluded to....DIEP isn't for the faint of heart. It is a big surgery with a long recovery. You just have to take it a day at a time. Once you finally decide to do it......that's half the battle!

  • gracewriter
    gracewriter Member Posts: 21
    edited July 2013

    Thank you all from the bottom of my heart!



    It feels so good not to be alone!



    I'm sorry that anyone else had to go through this too. I wouldn't wish this on anyone!



    It has been a tortuous 3 days. Thanks for the support it helps beyond measure.



    Frankly I mostly read posts. I don't know how I could have gotten this far without these courageous women who speak up.



    God bless and please wish me luck I am a candidate for this surgery.







  • Jaybird627
    Jaybird627 Member Posts: 2,144
    edited November 2018

    Hi.

    This thread seems inactive. lol.

    Looking for threads/posts of using thigh skin/fat as I have no back/belly fat or extra skin.

    My one TE is not doing well and PS is considering this procedure instead of more expanding/exchange for implant.

    Thanks!

    J~

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