DIEP 2013

Options
13567421

Comments

  • MartyJ
    MartyJ Member Posts: 1,859
    edited December 2012

    Nahahi, I have tempurpedic and getting up was not any more of a problem than with any bed. I would scooch to the side and then swing one leg down, like a pendulum. Sort of popped myself up. I used pillows to prop under head/shoulders and knees. Kept me on my back.



    Shells, I had a right mx. Then elected to have left removed 3 months later as PS encouraged so I would have matched set. Path report on left found DCIS. So glad I didn't have to worry about when the next shoe would drop.



    Geralyn, so sorry to hear your news. Had DIEP 7 weeks ago and am loving it.

  • nihahi
    nihahi Member Posts: 3,841
    edited December 2012

    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!

  • cher214
    cher214 Member Posts: 6
    edited December 2012

    I'm scheduled for a preventative DMX and DIEP reconstruction on Feb 8, 2013, in Nashville. I had to reschedule due to getting stomach flu:( which worked out for the best God has his ways. My daughter ended up having to have surgery right before Christmas, I'm so glad I was able to be there for her. I'm nervous but I know I'm doing the right thing.

  • nihahi
    nihahi Member Posts: 3,841
    edited December 2012

    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.

  • Marcie47
    Marcie47 Member Posts: 248
    edited December 2012

    To all the ladies having surgery in 2013, here is to a healthy and quick recovery and to a wonderful new year!!

  • heavenschild
    heavenschild Member Posts: 212
    edited December 2012

    @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
    seagan Member Posts: 166
    edited January 2013

    Hi, gals! Does anyone know how common it is to need a "Stage 2" surgery after a DIEP? It seems fairly common for women on these boards, and the website for Dr. Massey in Charleston (who seems to be a leading PS, or at least she's referred to a lot here) talks about Stage 2 almost as a matter of course with DIEP, though I may be misinterpreting her description of the process (http://drmarga.com/DIEP.html).

    I had been assuming a second surgery was only sometimes needed with DIEP, but should I be adjusting my expectations? I know it varies a lot, but roughly what percentage of women need Stage 2? This will be surgery #3 for me (lumpectomy in 2009, bilateral mast in 2011 with no recon, and now recon in 2013), so I'm really really hoping I'll only need one stage more! But I also want to be realistic....

    Here's to a healthy and restorative 2013 for all of us!

  • MartyJ
    MartyJ Member Posts: 1,859
    edited January 2013

    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 againLaughing!

  • SheChirple
    SheChirple Member Posts: 954
    edited January 2013

    seagan:  It is my understanding that Stage 2 is almost always routine.  My PS says it is a must.  The DIEP itself is such a long surgery they do not want to spend even more time under anesthesia for the revisions that can be done later, with better success. Mine will be 6 months post DIEP.

  • nihahi
    nihahi Member Posts: 3,841
    edited January 2013

    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

  • nihahi
    nihahi Member Posts: 3,841
    edited January 2013

    12:30 am here, can't sleep cause the ****implant/capsular contracture is really "zinging" tonight. Anyone else have this and any suggestions as to what to do to help while waiting for diep? Doesn't help that my "good" shoulder somehow seized up yesterday, so now I have 2 painful shoulders on top of everything else! Guess I'm getting a chance to practice sleeping on my back!

  • keznick
    keznick Member Posts: 45
    edited January 2013

    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??

  • calm
    calm Member Posts: 46
    edited January 2013

    Kleznick--glad you don't have to wait--I waited quite a while but I didn't really care. As for preparations, I think be ready for a stay in the hospital--first few days you will be groggy and not very mobile--and very tired (as they are checking you --blood pressure, doppler for sound of blood flowing in arteries/veins in your reconstructed breast--I didn't use most of what i took to the hospital like housecaot, pyjamas, slippers, reading material --but really appreciated toothbrush, hairbrush and my ipod for music. The only visitor I wanted was my husband who came twice each day--I asked my kids not to come. First three days I was just tired and sore (but not a lot of pain, to be honest). The surgeon predicted and he was right that day 4 was a 'turn around' day when i would start feeling better. I did a lot of cleaning around my house so it would be in good shape when I got home--I cleaned all sheets etcto minimize riskofinfection--I had prepared some meals for the freezer--and friends had given me some too--this was very helpful for my family when I was away and for the first few days when I got home. I was mobile right away at home and was doing laundry on day 2 after I got home--but really, I was just shuffling around and quite stooped so had to rest quite a bit--so if you can, have some family help at home for a few days when you get out of hospital. Before I left the hopital I prepared a lot of questions for the surgeon, like: what to look for if something is going wrong--signs and symptoms, who to call if something is not right, when I can bathe,when I can wear a bra, when i can drive, when I make a follow-up appointment, will he precribe pain-killers, when the steri-strips will come off. when I won't feel so hunched over. I also made sure I saw the Physio therapist before I was discharged to get exercise regimen and had questions for her: when can I do weights to strengthen arms, when can I do abdominal exercise, can I get some PT sesions paid for by provincial health care, who are the authorized providers, etc. From the time I went in to the hospital to functioning more independently at home: making meals,doing laundry--was about 9 days. I started driving after about 18 days post-op--so have some help for this period I would say.--everyone is different of course--this was my time-frame.My other advice is being  as healthy and active as you can be before you go in. I hope you experience is as positive as can be.

  • keznick
    keznick Member Posts: 45
    edited January 2013

    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 Smile). 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.

  • calm
    calm Member Posts: 46
    edited January 2013

    Keznick--sorry about the mispelling of your name last time! I was in the hospital 7 days. My PS said the norm for his patients was 5-7 days--i have read of some wormen on the DIEP 2012 thread being out in 4--I could not have left earlier but was very ready on the 7th--so depends how you bounce back. Very individual I think. I didn't wear anything under my loose-fitting soft shirts and pyjama tops for about a week after I came home--but i am not hugely endowed so it didn't really bother me--I think a cami would be perfect--something soft, not tight fitting. I didn't want anything rubbing my incision site--In the hospital the surgery and then recovery room took almost all day--surgery started at 7:30am and got out of recovery at 5pm--then tried to sleep--but very very groggy from anesthetic. But they got me out of bed on the second day-to walk to a chair and then back to bed. Day three was walking from bed to chair, walking to door--basically walking around my room--but I needed a walker/assist (sometimes held on to IV stand) for those days--nurse helped me get out of bed and back in--basically every day feels better. The biggest issue for me in being mobile in the hospital was managing the tubes. etc--I had three drains (one for breast and two in abdomen), a catheter and the IV--so I always needed help tomake sure drains were pinned to my night-gown and catheter bag went somewhere--was always afradi i was going to leave something behind. By day 4-5 when the catheter and drains were removed I felt like a free woman!  By day 6 i could walk freely up and down the unit hallways without holding on to anything--so knew i ready to go home. I probably could have driven before 18 days--but I would say I wasn't in shape to drive before 14 days--but could get around the house fine--the big issue is for a time you are hunched over--you can't stand perfectly upright--so it puts pressure on your back and hips--it was between week 4-5 when i could finally stand upright fully--which is on par with what other people on the site have told me.--Anyway, hope this helps--feel free to go on the DIEP 2012 site as everyone there has had their surgery and I am sure you can get more answers and experiences other than mine--nice to hear from another Alberta person.

  • nihahi
    nihahi Member Posts: 3,841
    edited January 2013

    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. 

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited January 2013

    Gosh, Calm, thanks for all this great information. I'm gearing up for surgery in April--exactly a year after my mx--and it so helps to know what others have been through.  Are you still glad you did it?

  • christina0001
    christina0001 Member Posts: 1,491
    edited January 2013

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

  • calm
    calm Member Posts: 46
    edited January 2013

    sbelizabeth--yes, very glad--I was breathless to see the transformation--I have a real respect for what these plastic surgeons can do--it has made an amazing difference to me.

  • Janet_M
    Janet_M Member Posts: 1,068
    edited January 2013

    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

  • nihahi
    nihahi Member Posts: 3,841
    edited January 2013

    Dear Janet,

    I am waiting for my consult for a diep reconstruction. Although I desperately want this surgery, I am also spending lots of time stressing about it too. My history is one of mastectomy, no implant, failed implant, replaced implant and now capsular contraction. I don't have any surgical/recovery advice for you as I am still waiting, but just wanted to say, I think your worries and thoughts are completely valid and normal. Hopefully some of the veterans can share thoughts that help you feel better about yourself and your choices. There may be some women out there with regrets about going the diep route, but I have not found any of them on the various sites on this forum. Best wishes.

  • 4my4babies
    4my4babies Member Posts: 36
    edited January 2013

    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

  • bdavis
    bdavis Member Posts: 6,201
    edited January 2013

    Hi Ladies.

    Shell.. About choosing UMX or BMX. I chose BMX because I wanted to put screening behind me once and for all, and reduce any future risk of cancer. Plus, since the recovery takes a few weeks, I wanted to just do it once. And last, I didn't want to waste any fat. If I had done UMX and then later wanted or needed to do the other side, I was worried about donor sites.

    About not having enough fat. I am one who was told I did not have enough abdominal fat. So I had my BMX and bilateral GAP flap. I am also one who had a few surgeries, that might seem daunting, but reality isn't nearly as exhausting as it seems. My incision opened on my right side. As a fluke, the incision keep getting bigger and finally it was distorted and compromised. So I had a wound surgery and then a DIEP just to replace the right side (That was in one month). Then three months later had my Stage II. I haven't met anyone who hasn't had a stage II. It is the finishing touches surgery. And a short recovery. I have also decided to have a stage IIb this January. Many might be just fine with my end results (pictures are on the picture forum), but I want perfection. So I am headed back under the knife.

    About scans prior to surgery. I did have the scan, as the doctor pre-determines what he will use. I did not sign a waiver to approve TRAM. My PS doesn't convert to TRAM ever, so it was not an issue. But from what I had read, whether its a little muscle or a lot of muscle, it will compromise core strength, so please proceed carefully when signing waivers.

    Recovery time and drains... After my DIEP, I was off for 4 weeks and then back to work. I had drains for about 2 weeks, which was nothing compared to my GAP drains which I had for 9 weeks. Was it a pain in the neck? Sure, but it is a small investment of time. I continued to see the big picture. Looking back, I would do it again in a heartbeat. And obviously since I am having another surgery, I am not afraid of it... I am actually excited. And then tattoos by Vinnie.

  • wraithg
    wraithg Member Posts: 93
    edited January 2013

    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
    ketch Member Posts: 157
    edited January 2013

    I'm scheduled for Feb 14 with Dr. Kline. I go for a pre-op on Tuesday. I live in upstate SC, so I am about 4.5 hours from Charleston. Unlike most of you, I have plenty of stomach fat! In fact, I am a bit overweight. Dr. K wanted me to lose for the DIEP. I've lost 30 and need to lose another 10 before the surgery. I'm pretty toned everywhere except my stomach, so I am looking forward to the tummy tuck. I've been excercising since June. Luckily, my local hospital where I did chemo offered cancer rehab for 3 months. I kept going after my rehab ran out,  I now enjoy excercise! And, being in the medical setting while excercising has opened my eyes to its importance.

    All that said, as time creaps up, I am getting very nervous about it. Worrying about blood clots, being "under" for a long period, healing and such is, I guess, normal. I am more ready for it to be over with!

    My mother and I will be staying in Chas for 2 weeks after the surgery just to be safe. I had my MX there with Dr. Baron and had a drain tube hemorrage after I got home and had to have that fixed with an overnight surgery locally (& by the general surgeon who I'd had words with, no less! The local surgeon told me that my choosing a dbl mx was not necessary, even though it was my choice....anyway....) So we will hopefully enjoy IOP for a while esp if the weather is good.

  • MartyJ
    MartyJ Member Posts: 1,859
    edited January 2013

    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!

  • ketch
    ketch Member Posts: 157
    edited January 2013

    Oh Marty, I'd not thought about that! I'm sure we will go,  esp my son when he comes on weekends!

  • MYPRECIOUS6
    MYPRECIOUS6 Member Posts: 1
    edited January 2013

    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..

  • shells43
    shells43 Member Posts: 1,022
    edited January 2013

    Hi all, thanks BDavis, for sharing your information. I am definitely leaning toward the bilateral DIEP but I have to talk with the surgeon to see if I have enough fat. I have gained 10 lbs over the holidays, so that should help! Don't know if I should maintain it or try to get back down to my regular weight. I feel chubby.

    I have a question maybe no one wants to answer, but my guy is a boob man, and let's just say that taking the anti-hormonals is not a benefit when it comes to a sex life. I think my good boob is about the only erogenous zone that still works fairly well. Am I correct in assuming that after DIEP, that too, will be gone? I can't see how it could be the same. It the end product worth that sacrifice??

    Thanks in advance if you can answer that question. I wish we didn't have to deal with any of this.

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

    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!

Categories