DIEP 2013

That's a great vote of confidence on the mattress, Marty. Thanks. Good to hear about another diep person who is sure the pretty intense surgical journey has been worth it too. Cannot wait to be able to add my surgery date to the list!

Hope your daughter is on the mend now. It is amazing how things seem to sort themselves out isn't it! Nervous has got to be the new normal for us 2013 people, but when you know "inside yourself" that you have made the right choice for you, it does help. Best wishes for the coming year.

@Geralyn - sorry for the reocurrence, I know how that feels.  My PS told me that the DIEP actually has fewer surgeries and complications in the long run than the implant.  I wanted to do it so my DH would have something comparable to the real thing.  Gentle cyber hugs to you! 

@calm - thanks for the advice re:  PT, my PS didn't say anything about it and I am going to ask re: exercises, etc.  Instead of sleeping in the recliner, I'm now considering getting a wedge to put under me...

Happy New Years to all! 

Seagan - not all doctors include/consider Stage 2 necessary.  Dr. Massey is my doc.  She and the docs in NOLA liken Stage 1 to putting the clay in place while Stage 2 is for sculpting.  My Stage 1 was 7 weeks ago.  The flap on the left side ended up sliding a bit under my arm and the upper slope is concave.  But, it feels soft, bouncy and natural - though off to the side.  The right side (which had more scar tissue from the silicone implants) looks pretty good. It has the appropriate slope, but is slower to soften.  I do have a 1" diameter roll at the bottom of that breast that is hard (about 4" long). It is slowly breaking up in some places at the arm side, but not yet in the center.  These are things that will be corrected at Stage 2.  Both breasts will be reshaped for the most natural look possible.  Liposuction is done to sculpt so that the body looks most natural.  Plication (tightening the abdominal muscles) may also be done at that time if needed.  Repairs are made to scars (dog ears removed, etc.).

For some women, Stage 2 is a 2 hour procedure.  For others it might be 5 hours or more, depending on what needs to be done.  Some women have a Stage 2b to continue prefecting the appearance.  

Because of the nature of this type of microsurgery, I think that doctors do their very best to ensure the ultimate outcome.  I have a friend who only had one procedure - Stage 1.  There were problems in communication with her surgeon concerning wound healing issues, stages, etc.  She elected to stop after Stage 1 and has repeatedly told me that she has absolutely no regrets about having DEIP.  

I am looking forward to Stage 2 even though it will mean I will be in compression for a while. And, if a Stage 2b is needed, then so be it.  Yes, that will make my fourth surgery just related to DIEP, but once it is done - it is done.  I can handle that knowing I will never have to replace the implants again!

Hope everyone had a good new year's eve. Could someone explain the whole "hard spots" after diep surgery thing? I keep reading about it, but don't understand how/why fat hardens, unless it means necrotic areas? Thanks

I haven't been here for a few weeks and have missed all the messages. Looks like a lot of information from everyone, that's so great. Nice to see some from Calgary. I had tried to get a surgeon in Calgary/Edmonton but the waiting list was 2 years, ugh. Then I found out a surgeon from Winnipeg had just moved to town (Red Deer) and I was able to get in right away.

I got my calls today for the pre-admission clinic and blood tests. Now things are getting real, less than a month. Yikes. To think that I am intentionally harming myself, good grief what am I thinking?? But I am also counting down the days till when I get rid of my fake boob. It will be nice to be somewhat normal again.

Is there anything I should be doing ahead of time to prepare??

Wow Calm, thanks for all the tips. I never had pain with my mastectomy so was wondering what pain I'll have with this. Good to hear it isn't too bad. I'm not big into taking drugs if I don't need to.

How many days were you in the hospital? Do they have you up and around the first day? We don't have any family here except my husband and he was going to take a few days off just to be with me (I think he just wants to go ice fishing ). What did you wear instead of a bra? I've got a cami thing from my other surgery that has 2 pockets for those stupid drains. Did it take 18 days before you could drive? Sorry, kinda random questions that I've got going through my head now that it gets closer. Those are some great questions to ask the doctor, I'm definitely going to write them down to take with me.

Any hints from anyone on easing capsular contracture pain???????????

Got a call from the surgeon's office today. Now have a date booked for the consult appointment. January 23. 

Any tips on getting into shape before surgery? I want to recover as well as possible.

Hi there, 

My name's Janet and I'm scheduled for a DIEP sometimes this winter, date TBA. I had bilateral breast cancer and had finished my chemo and radiation in May 2012. 

Not that the date is getting closer, I'm terrified.  I've been following this thread reading of your experiences and trying to find a little courage. This surgery has been on my mind several times a day (and sometimes in the middle of the night) for a year, and I can't really believe it's going to happen. 

I'm doing my best to focus on the long term outcome, and not obsess about the small picture, but today it's not working. Here's what I'm afraid of. Losing my nipples, drainage tubes, a giant scar across my belly, not having enough fat. But my  lovely surgeon seems to think I have enough to work with. My breasts are fairly small and he says I will probably have to go down a cup size. It makes me laugh that after all the dozens of tests I've been through, and all the machines I've been attached to, his method of gauging my fat is to squeeze it gently between two fingers. Really?! Is that the most precise test he can do after 40 years of medical training? Good thing I trust him so completely.

But the bigger issue for me is losing me nipples. My right side is a bit messed up from surgery and is a  weird looking. But the other one is perfect. I've never had kids and I'm very fond of my (almost) perfect little left breast. I keep telling myself that the biggest issue is health, and that I got used to my deformed boob, even though I didn't think I would. Also, by having the surgery, I'll once again have symmetry. But I have to be honest - the thought of having a nipple removed really really horrifies me. Can anyone tell me how they're coming/or have come, to grips with it.

Another issue is that I elected to have this surgery over full radiation. I wanted no rads at all, but was told I would have to have them to my upper breast/neck area where I'd had my nodes removed. It's hospital policy to have radiation when there are two or more positive node, and I had two. What I keep thinking is, that if I'd chosen a full treatment of radiation, I'd be done my treatment by now, relatively intact, and could get on with my life. This surgery reduces my risk of recurrence by about 8%, and at the time it seemed huge. Now though, it seems manageable. Of course - I can't change my plan now. But I'm just telling my story cus it feels good to get off my chest, and is part of the reason I am not fully embracing my upcoming surgery. I wish I was more excited, but I'm just scared. There is part of me that wishes I'd done things differently. 

So - I've got hundreds of medical questions, a lot which have been anwered by reading about your surgeries. But today, foremost on my mind, is my recovery. As I said, the reality of my situation is just starting to sink in.

I read that some of you got a recliner? I think that sounds brilliant, but also makes me question if it will be difficult to get in and out of bed. I plan to prepare foods in advance and clean my house, but I also have two cats and a dog. Would it be wise, do you think, to recuperate somewhere without animal hair? Not only that, but there is the possibilty that they wuld jump on my if I fell asleep on the sofa. I don't remember it being an issue after my last surgery, but a larger area will be affected, and the cats have always been very fond of jumping on my stomach.  This is what I was thinking last night - I remember being in a toy store and seeing a halloween costume that included a body sheild (might have been a turtle, can't remember). So I started thinking that I should make some kind of sheild in case the animals get frisky - even if I am dressed like a turtle. 

Another issue  is that I live in Toronto - which is full of snow. My surgery is likely to be in March and I'm not sure how to handle going outside. I heard of one lady who had a walker. Has anyone had any expereince wth that? 

And a cathater! Yikes, I hadn't even thought about that. God - I really have been in denial. I depereatley need to find some humour & courage, and to put everything into perspective. Thanks for listening,

Janet

Hello all - I'm an occasional lurker since late 2011 when I first made the decision to have a prophylactic bilateral mastectomy with immediate reconstruction due to a strong family history.  My younger sister lost a 5 year battle with breast cancer in 2008 at the age of 43.  I'm now 51 with 4 small children (two 10 year olds and two 7 year olds).  To my husband and me, this was a no brainer decision.  Flash forward to now and I'm scheduled for a bi-lateral DIEP in NOLA with Dr. D. on January 17th.  That's less than 2 weeks away! I am a little overwhelmed to be sure, but honestly, more excited to have this done and overwith. My intentions were to do it early 2012 but life got in the way and, as I'm sure you can imagine, it is an easy thing to put off.  Then another mammogram (negative thank God) rolled around and it finally kicked started me again.  I couldn't keep putting it off or I would have no one to blame but myself if I ended up with breast cancer. And after everything my sister went through, and everything most of you have been through, that just wasn't a gamble I was willing to take.

Then the most amazing thing happened, after going down for a consult in October, and having everything sent in to BCBS for out-of-network approval, I was granted full pre-certification 29 days later!  No appeals...a slam dunk.  And I was totally ready to put up a fight.  We had loaded up my pre-cert request with everything I could think of: letter from my GYN stating why he was behind be doing this, a copy of my sister's death certificate stating she had died from metastic breast cancer, a copy of my birth certificate showing I was her biological sister and therefore high risk, and a two page letter from me that explained why I had made the decision I had made, why I didn't want a lat or TRAM, and why I wanted a DIEP in New Orleans.  Lo and behold, they approved me.  I think was still in the floor from the shock when she called to tell me it went thru on the first pass.

So, flash foward to now, and I'm headed down in a week and a half. I know it's a big decision, and not everyone agrees with, but I suspect each of you understand why I made it.  Not only do I have four small children, but I am relatively young (or at least I feel that I should be!), and I can.  Like I said earlier, it's a no-brainer in my mind and in my heart.  I've made no secret about what I'm doing (and why) and I have had great support from friends and most of my family.  Ironically, my brother, who is an OB/Gyn, is the only one of my family who is not supportive.  Or at least not happy about it because he thinks I'm jumping the gun.  I say, yes, that's exactly what I'm doing.  I honestly think what bugs him the most is that I didn't consult with him before or during the decision making process.  But I had my reasons for that.  He's like so many other physicians across the country who are not familiar with the DIEP.  It amazes me really.  I would put my gynecological life in his hands (and that of my personal Gyn), but what each of them knew about the DIEP would fit in a thimble. Doctors, as a whole, seem to "know what they know" and practice what they know, but they truly do have blinders on when it comes to things outside of that until they come face to face with it.  I have no doubt that, once I am through with all of this, both my local Gyn and my brother will be recommending their patients check out what NOLA has to offer instead of the "standard" lat and TRAM.

That's enough from me.  I just wanted to say hello and say that, although I am not in the same boat as most of you, I am taking a big part of the same trip.  You all inspire me.  You already know God doesn't give us more than we can handle even when we think we're going to break. And I believe you all are a testament to that fact. Steel magnolias...every one of you.  God bless you all.

Nancy

Here in Ontario. thanks for that. still trying to avoid talking to friends right now and still not sure what treatment I want. should I even listen to dr. and have a masectomy at all??? 

Ketch you will be in Charleston in time for SE Wildlife. I am sure the weather will be wonderful at that time of year as it usually is. Congrats on the 30 lb loss!

I'm new to the site and I'm hoping to get a DIEP myself.I have IDC/DCIS multifocal.I've had 5 children breast fed all 5 so my attitude is BMX although it's only been seen in my left breast.I'm 42 and just want to get the ball rolling.I've had 2 c-sections and have been told that I have no fat in my belly region.I'm really hoping I can get both done by DIEP.I'm still waiting on my FISH test to come back since my HER2 came back equivocal,progesterone-,estrogen+ ,my head is still spinning just trying to understand all of this.I'm a D cup and would love to stay that size if possible but I worry there won't be enough fat there.I've been transferred out to a breast care center and see them Wed.9,to discuss my treatment &surgery plan.This site has been a blessing for me and husband..

Shells...the erotic sensation will be gone. For your husband, it may be the same, but not for you. My husband was a boob man, too. I thought, well he will love this....I'm going from a B to a D cup. But once he found out I couldn't feel anything, he truly lost all interest in sex. With being dried up from no estogen and the lack of feeling, sex is almost nonexistent. The one downside to my DIEP journey. We are still trying though!