DIEP 2014

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  • Sweetie1972
    Sweetie1972 Member Posts: 84
    edited September 2014

    I had chemo and it was far worse than diep recovery. I am 3 weeks out today and feeling pretty good. I still end up napping atleast one or two hours a day

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  • debiann
    debiann Member Posts: 1,200
    edited September 2014

    Thanks so much for the list of what to bring and some insight into what to expect initially after surgery. Hearing that surgery is not as bad as chemo is the BEST news ever! I'm too worn out to clean like the energizer bunny, but my mom and DD are coming the week before to help. 

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  • lemon68
    lemon68 Member Posts: 684
    edited September 2014

    Hi I just read about 12 pages to catch up! To those healing, I send you love and support. To those about to come over to the other side I send you strength.

    I got home late on Sunday after 8 grueling 12 hour days on my feet dressed up. I was soooo tired. I have to do it again in Oct. but that seems a million years away right now. I slept on Monday and had my Stage 2 on Tuesday morning. Its all big blur to me. He fixed my indent and took away my side boob :) looks and feels so much better. Nothing could be done to my right side, due to the rads he said it could be 6-12 more months before it heals. It is still hard and hasn't dropped so to speak yet. He got rid of my dog ears and did some lipo to the upper belly and sides/flanks. I am in compression to my knees and if I move certain way it feel like glass daggers sticking into me. Tomorrow will be 1 week. I am taking my drugs so I am a bit foggy. Honestly today I didn't wear my contraption of compression and right now I am bloating up like a balloon! so now I know why I am to wear it 24/7. I have steri strips over everything so I cant really see much, mostly black/blue turning yellow all over. I don't know how I feel about it all right now. I too have been struggling inside with sadness. I do feel alone and can be brought to tears by the slightest thing. Ugh... I also have for about 1 month been having my hair fall out. I have super thick hair, or I did but its thinning and its freaking me out. They think it is due to the anesthesia and said it happens about 3 months after a long surgery. Well the timing is correct but I also am now in surgical menopause so I am unsure what the issue is. I may sound vain and maybe I am but I am having some real worry. I just want it all over but I know this is a part of us now, what happened happened and what we have all been though is now part of who we are. I feel like I need to find me inside all of this now and am struggling to do so. I cried as I read the struggles here on the boards because " i get it" and it can be painful inside sometimes.

    Thank you all for everything as always and letting me share my thoughts.

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  • ronqt1
    ronqt1 Member Posts: 811
    edited September 2014

    Thanks Goldie and Sharon, unfortunately this has been a very bad health year for my husband so between he and I, this has been quite an adventure. I thank you both, but who knows. When one gets desparate, certain steps have to be taken. I will keep your posts in mind.

    Thank you.

    Hugs,

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  • Andrea623
    Andrea623 Member Posts: 959
    edited September 2014

    Lemon, you are not vain at all! I think every one of us would feel exactly as you do. I think this cancer journey redefines us. I am not the same person I was before, and sometimes I feel like I'm not sure who I really am anymore. But each week that passes, I get closer to discovering new beliefs, or maybe, it's getting back to who I was all along. I can't explain it very well, cause I don't have the gift of words some have. Anyway, I just want you to know you are not alone, and hope you will continue to share your feelings with us. We get it. Hugs and blessings to you.

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  • debiann
    debiann Member Posts: 1,200
    edited September 2014

    Hair loss from surgery? Wonderful, just as it starts to grow back after chemo it will fall out again.Me thinks I should just get used to being bald, lol.

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  • Teacher64
    Teacher64 Member Posts: 840
    edited September 2014

    lemon - not vain about hair. My first thought when told I had cancer was about losing my hair, not my breasts. That came later. When I was told radiation and my pacemaker were not compatible and a mastectomy would be my best choice to avoid meds for years that would complicate my heart issue, I still asked if I'd lose my hair. If one thing about our identity can be spared, I'm all for it! It is not vanity.

    I'm so glad you got through your business trip and stage 2. Wear the compression. I was told 24/7 for 4 weeks and then just at night for two weeks. Because I've developed a hard bulge on my right side, it really feels better to have compression (spanx) 24/7. Do massage wherever they told you. 

    Did you have nipples done or just the side breasts and fat grafting? I had dog ear on right side but because of bulge, it doesn't look different. My left side looks great at nearly 5 weeks. You will notice change at about week 3-4, or I did anyway.

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  • mary625
    mary625 Member Posts: 1,056
    edited September 2014

    Teacher--what is the warming blanket exactly?

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  • Ridley
    Ridley Member Posts: 634
    edited September 2014

    lemon - re your hair thinning, I had that happen too, and I know it was thinning about 3 months post diep surgery, although I can't remember exactly when it started.  I had attributed it to tamoxifen.  In any case, the good news is that is stopped.  I did start taking the supplement biotin (2,000 mg per day), as well.  Not sure if that has made a difference or not.  I hope your thinning stops as well.  I was totally irritated when that started happening.  The hair everywhere was driving me nuts.  (Please know I mean no disrespect to those who had to go through chemo.)

    I have my date for my next surgery - stage 2 I guess, although, we don't really refer to it like that here in Toronto.  October 8th, we are going to try some fat grafting to plump up one flat spot, and in think we are going to revise a couple of scars where my stitches had to be removed.

    Take care all, 

    Ridley

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  • Sarahbb
    Sarahbb Member Posts: 50
    edited September 2014

    I am thinking of moving my DIEP into next year. My family really needs my income from December work, it's when my online shop is the busiest. But it also gives me more time to recover from hysterectomy  and to lose the weight. I'm thinking January or February, so technically I'll be 2015 DIEP. But I'd like to stay and hang around here!

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  • tlbradyful
    tlbradyful Member Posts: 134
    edited September 2014

    I miss a few days and I'm pages and pages behind. I have moved beyond my blues. YAY. My son had to come home from college for a week and the doctors are having a hard time figuring out what is wrong with him. I took him back this weekend because he has internship interviews tomorrow. As a senior, missing a week was already too much. I took my daughter to New Orleans to take her first of four CPA exams. This all reminded me of why I have to pull it together.

    Lemon - my hair is falling out too. I blame it on Tamoxifen because when I stop taking it for surgery (3 weeks before/3 weeks after), the hair loss stops. I start growing hair everywhere!!! Are you on Tamoxifen?

    Goldie and Georgie - it sounds like we are all moving forward emotionally. Thank you both for the support.

    Sarah - Keep fighting for your weight loss goal. We are all here cheering you on.

    Andrea - I'm happy you are still here. 

    Teacher - You are going to have to put on the grammar police hat for me. Thanks for the lie / lay hints. I live in Alabama and work really hard to defy the stereotypes.

    Stage 2b is September 26th

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  • Teacher64
    Teacher64 Member Posts: 840
    edited September 2014

    Mary - you need to be warm after the surgery and they put a warming blanket over you. I don't know if it's to help blood flow, but they kept me warm for a day, then took it off.

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  • Teacher64
    Teacher64 Member Posts: 840
    edited September 2014

    tlbradyful - what is done in stage 2b?

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  • naiviv
    naiviv Member Posts: 535
    edited September 2014

    Tan72, I am heavyset and had no issue at all with the belly incision. I did and still do have a belly button that is not healing well it was infected but seems to be clear now, but I was told was not weight related. I did have a CT scan of belly and had good veins in belly.  I had a failure of one of my flaps due to venous congestion was also told not weight related (I asked).

    Let me report that I got permission to go to the beach with drain and bb issues. I wore a  two bikinis, from before the molded cup was too big and my nip kept coming out. It helped to hide the difference between the two. The other was a triangle cup and soft and let me tell you the my diep girl looked awesome, my lap girl still needs some filling in and a bit of lift.

    Swimming is a challenge on lat side very tight and limited rom. diep side has no issues.

     It was so great to be out at the beach, once I hid the drain in lefty top and used a waterproof seal on bb. I was good to go. No worries.  I didn't comb my hair, went short and messy with a hair band.  I had so many compliments on the color and cut.... I just smiled and said thank you

    Have a great week,

    V

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  • MEG2
    MEG2 Member Posts: 114
    edited September 2014

    Teacher, thank you so much for the list!!  I've copied it for future reference. I'll be checking in frequently until surgery to read your stories and get advice.

    Thanks to you all for sharing your experience.

    Mary

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  • goldie4040
    goldie4040 Member Posts: 2,280
    edited September 2014

    Lemon, I am glad you are home, and stage 2 is over.  I have been thinking about you.  I knew you would show up when you were ready.  First, yes...anesthesia can cause some hair loss in some people, but so can menopause.  You are not being vain. I forget who mentioned it, but Biotin 2000 mgs a day is a great idea.  I do that too, and I think it helps.  I have noticed a bit more hair falling, and I blamed it on stress, but I looked up general anesthesia, and hair loss is a side effect.  The lipo hurts, right?  OMG...I have to do it a second time in a few months...ugh.  You should feel better very soon.  The compression helps a lot at the beginning. I am glad to hear you like what you see after stage 2.  Hang in there Cinco Sister.  You will get through this too. 

    Naiviv, glad you enjoyed your swim.  That range of motion will come back on the LAT side too.  It hasn't been that long.  Swimming on a regular basis would be a great way to get it back.  Is there somewhere you can do that?

    Sarah, waiting until you ready is not a bad thing.  If you take care of everything else that is weighing on you, and you need to work in December, probably best to wait.  In the meantime you can slowly lose the weight, which is healthier than starving yourself to get it off. We are here for you.  Hang in there.

    Teacher, I didn't have any warming blanket, or heated room.  I think it's another one of those things that each surgeon decides on themselves.  I did have the heparin shots...ouch.  I had no tummy compression, or breast compression either. 

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  • MsW2012
    MsW2012 Member Posts: 226
    edited September 2014

    oh, debiann, hands down chemo was infinitely worse! May depend on the chemo, but at least with this surgery you don't have to go back and do it all over again every three weeks! For me, for what it's worth, the DIEP recovery was tough but totally doable. One thing my PS told me beforehand that kept ringing in my ears: you have to be a patient patient. It takes time.

    For you and Meg2, I don't think anyone can be completely prepared but one thing I would have done differently, had I only known: I wouldn't have expected to look better after surgery. I looked much worse. The breasts, DIEP or reduction/lift, change indescribably over several weeks. So try not to freak out. Every woman's experience is unique. Just remember it's not magic.

    I agree with Lisa, there's not much to pack. You leave the hospital before you're really coherent enough to want anything. All I cared about was knowing my DH would be there every day, that was not alone. I left in the same clothes I arrived in, only hospital gown in between.

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  • MsW2012
    MsW2012 Member Posts: 226
    edited September 2014

    Oh, lemon, I am sorry to hear about all that emptiness you are feeling. I would have written almost exactly the same thing a few months after I finished all my chemo and radiation. I felt like an empty sack and couldn't imagine ever having my whole self back again. But I feel much better now, about a year later. Not that I was depressed for a whole year! But a year later I read that old journal entry and thanked God that I came back.

    Diagnosis of cancer and a lot of aspects of treatment just wreak havoc on us but in time we do recover. I have come to love and trust my body again. It's awful having to wait, but it does get better. Much better! Be easy on yourself. You've been through a whole lot.

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  • The1toC
    The1toC Member Posts: 126
    edited September 2014

    Debiann welcome. Chemo worse recovery HANDSDOWN.

    Lemon welcome back. Interesting to hear of your stage 2 expereince. I think we were around the same time. Vain on your hair....not at all. From the photo looks like you have great locks to love and be proud of. Be easy on yourself.

    Teacher your list and suggestions are bang on for DIEP. 

    I also brought a spin toothbrush, eyedrops and some notecards to write thanks to my caregivers.

    The blanket is like a perforated air mattress with the holes toward your chest and blows warm air on you all the time.

    Naiviv how wonderful you got to enjoy the beach! Love the new photo of you. You look SO happy.

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  • Andrea623
    Andrea623 Member Posts: 959
    edited September 2014

    How bad is the lipo for fat grafting? I'm more nervous about it than my surgery! What kind of compression did you wear afterward?

    Sarah, please stay in this thread, even if your surgery is done in 2015. I was warmly welcomed to stay, even though diep reconstruction fell through for me. You're part of this group!

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  • Janet_M
    Janet_M Member Posts: 1,068
    edited September 2014

    Teacher - A++! Your post surgery prep list is fabulous.

    I want to mention my favourite two things. Firstly, my wedge pillow. I slept in my bed as soon as I got home, with a giant stack of pillows, heaped up on the wedge. A few weeks later I'd lie on the couch with just regular pillows, and use the wedge to elevate my legs - to get the blood moving in other directions. 

    Also - cotton cammies. I too lived in but button front shirts, but I always wore a cammi to hold everything in place, and as a place to pin my drains. 

    I was never offered compression, and I liked the comforting feel of something close to my skin. It's always surprising to me how different PSs vary in their pos- surgery approach. I was given no compression, warming blanket, or dietary restrictions. 

    Lemon - There's a world of difference between vanity, and loss of identity and control. You don't sound vain at all. Just like the rest of us - enough is enough. Leave me alone.

    Ridley - I'm going for my Stage 2 (or whatever it is we call it up here) one week after you. Time for some nipples! Also, I'm secretly looking forward to having a couple of hours with our lovely DR H. I'm going to have my procedure done under a local, so I plan on taking something to relax me. Chances are, I'll end up saying something embarrassing  - like, 'I love you'. 

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  • sky78
    sky78 Member Posts: 24
    edited September 2014


    Hello, I poked around these boards last year, but my DIEP surgery wasn't scheduled yet and I ended up feeling like I had to take one thing at a time.  Now my surgery is one month away and the anxiety is really picking up.  I have been told it isn't has hard as the mastectomy/expander surgery, but I just find that hard to believe.  Plus, sometimes doing something a second time is harder than the first because you know how hard it is. So, any surgery right now just sounds overwhelming.  On the other hand, I have had these expanders in for nearly a year (my PS is adamant that they need to be in there for 9-12 months when one has to have radiation) and am pretty exited to get rid of them. 

    I just wanted to pop in and say I'm here and am reading these posts about what to pack and what to expect. Thanks so much!

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  • Lilith08
    Lilith08 Member Posts: 163
    edited September 2014

    Wow! Busy thread, indeed! Lots of good info here since my last visit.
    I've been reading breastrecon.com and it's very informative. I've also discovered that if I really do want DIEP, it will require changing to the other hospital system here. I like my current surgeon and would feel awkward about leaving her--though I'd be going back to my original BS from many years ago, who I also like.

    I'm a bit torn, really. The other issue I'm struggling with is that my BS is not supportive of my original choice to go flat and is not good at camouflaging her opinion at all. Thinks I'm too young (46) and would find myself unhappy later on. But what if I go back to the other BS and he doesn't agree that I am a candidate for PBMX? I feel myself thinking that I should go ahead with things as they are, go flat, and then if things don't work out well, have things cleaned up later by a PS, or even opt for DIEP later on. <sigh...>

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  • pzercher
    pzercher Member Posts: 51
    edited September 2014

    Lovecat: regarding when you can be an active walker again. You can see from this board how variable people's experiences are, and you don't know what unexpected event might come your way. However, if your experience is pretty "routine," like mine, then I think it is reasonable to expect to be up and walking within a few days of discharge. A college friend visited me 10 days after my surgery, and we walked three miles. It was too much, and my belly was sore and swollen, but I also had something of an endorphin effect, and my overall pain was less, go figure. At 2.5 weeks I was in Colorado and could take some 1-2 mile flat walks pretty easily (but would often hold my hand to support my DIEP breast). I am 5'3" 120 lbs, so my DIEP was pretty tight and I still felt okay. I never used compression, so that is something that might help you through the walk...

    MSW: I feel like you are my doppelganger! Six weeks out now, and yes, feeling much better. I now see why people say this is the time that you could really return to full-time work and feel closer to your old energy. Less pain (especially the burning and tightness in abdomen), better range of motion, less tightness. Rib must be healing as well--less pain at sternum. I agree 100% regarding the experience with our sons; it matured him and probably helped take some of the focus off of the big college admissions game. Also, many hilarious moments. I particularly recall watching a Game of Thrones episode with my husband and three sons in which all of the flagrantly displayed breasts were analyzed for size, shape, aesthetics... a bunch of junior plastic surgeons. 

    Meg: Hard to add much to Teacher's excellent list, but I would emphatically mention one thing: staying on top of any constipation. Start taking a stool softener like Senna a few days before the surgery. Your doc will probably have you continue that through your first week. But if you go more than one day without a BM, immediately start on a laxative as well, like Miralax. I wish I had done this and had one absolutely miserable day on Day 7 after surgery. That's the last thing we need to be worrying about amidst all of this!

    Someone mentioned going flat for now after her BMX because she can always have  a DIEP later. Personally, I think that is a very viable alternative.  One of the hardest things about this process for me was trying to imagine how something was going to feel for me. I was unprepared for how protective and defensive I felt about my original body. It was far from perfect, but it was mine, it was me, and I really resent that it has been carved up. I didn't realize the mastectomy and SNL biopsy would remove so much tissue and cause discomfort for so long (I had cording also...). I never imagined how much i would DESPISE the tissue expander. I sure hope my pectoral muscle returns to normal with that thing gone. I have done some soul-searching wondering if I did the right thing with the DIEP; like others, I feel so ready to be done with this, and I think if I had just gone with the mastectomy and nothing else, i could have moved on more quickly. But who really knows???? As I think through my process, based on everything I know right now, I still conclude it was worth doing, particularly since I did not want to take off my healthy breast. I suppose we will always second-guess our choices and just do the best we can.

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  • ronqt1
    ronqt1 Member Posts: 811
    edited September 2014

    Hi all my new diep friends. Went to PS this morning, sat in consultation room quietly went over all options and it was decided for me and savings one breast (mastopexy) I am going to have the latisumus dorsi reconstruction on the mastectomy with implant side. Will save the implant. I asked is the muscle what is bothering me. He said no. God willing it will reduce the tugging and pulling and all the surgeries  which I have had these past years with every known technique possible without touching my belly. I have faith in my dr. Of course he says again promisng no pain with Lat, but the tram and diep are not for me. He did explain that I will be in hosp for a few days with drains, a six week recovery period with visiting nurses to help out as my husband can no longer do so.

    I thank you all and will now jump to the Lat site.

    Hugs to all for all advice.

    Ronna

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  • pzercher
    pzercher Member Posts: 51
    edited September 2014

    Lilith: just saw your post, you were the one I was thinking of. I suppose these docs have experience with tons of women and make their comments based on that (maybe others have said they were unhappy going flat...). I have talked to MANY women who made that decision and were totally fine with it, even at your age, even with just a single breast. One well-meaning radiologist went over my MRI with me and my husband and said he wanted to make sure I didn't unnecessarily go through a "mutilating" surgery, because "women's breasts are so important to their identity..." (OK, doc, beware the sweeping generalizations...). Reconstruction does not mean a return to your old breasts. I am just hoping to feel balanced again and to not struggle with clothing choices. 

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  • lovecat3
    lovecat3 Member Posts: 53
    edited September 2014

    good morning I so enjoy reading everyone's posts! For what it's worth realizing we all have different experiences I had BMX nodes etc the whole kittenkaboodle they took everything because of IBC. I've tried so hard to accept the new me but it never happened Questioning my age 57 I have a most loving supportive husband but still can not hang out at home w just a tee on. I find myself HATING my prosthetic hating stuffing it into a genie bra hating pulling it on n off hate hate hate!! So even tho I getting scared of the pain n recovery ( as we've all been through enough) I can't imagine what is left of my life feeling this way

    I told my Coussis ( cousin who's like a sister) at least when I'm gone I'll have 2 breasts so put me in my robe collar up w some lip gloss

    I can't wait to donate prothesis and to wake from surgery on the 25th with my new breast

    I will follow your helpful lists!!

    Hope everyone has a nice day today !!

    Hugs

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  • MsW2012
    MsW2012 Member Posts: 226
    edited September 2014
    JanetM you crack me up, crushin' on your doc! The1toC, I notice you and a lot of others seemed pretty coherent right after your surgery at the hospital. I don't know if it's the anesthesia, or how long you're under, but I was totally out of it and disoriented almost the whole time. I did use the pain pump once, dilaudid, maybe that was it. I only vaguely remember some kind of warmer on my chest. The memory is like one moment in time. Same with the leg massagers. I don't remember any nurses coming in to check on me but apparently they did several times a day. My husband told me we had a visit from the hospital pastor and had all this conversation and I have no recollection of that whatsoever. Strange. Just glad that kind of memory loss or whatever you call it was temporary!
    Sky78, comparing the mx/expander surgery with DIEP is really hard. When I had the first one, it seems like I was really weak and it was a longer return to normal energy, but then again there's the stress factor. Having just been diagnosed and all the steps leading to the mx it was all so overwhelming. This time, emotionally, at least I had made the decision and it wasn't a matter of life or death. I had that Week Three Meltdown emotionally, which was really weird, but it passed. DIEP is a major surgery but if I had to compare it with mx, it was much easier. Hope that helps.

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  • goldie4040
    goldie4040 Member Posts: 2,280
    edited September 2014

    Oh my gosh, so many posts.  It's a busy time of the year, I think. I am getting ready to head out to PT, so I only have a few minutes. 

    Lemon, hope you are feeling a bit better today.  I find it really interesting how many of us had a big emotional down swing after stage 2.  We were talking about it while you were at you conference.  I don't think what you are gong through is unusual, and the hair loss is temporary.  Emotional and physical stress do that to so many people.  I have had a little bit more shedding than usual, but my hairdresser was so kind to point out to me a week, or so ago, that I am going gray very quickly.  Thanks! 

    ronqt1, I hope you found an option that you are comfortable with.  Keep us posted.

    pzecher,  I love your last big post.  So much I want to address, but I have to get on the road.  I didn't think this 30 to 40 minutes trip to PT was going to annoy me, but it's starting to.  I am not a big fan of driving long distances, and I always drive too fast because I want to get it over with.  No a good habit!  Oh well, I think the ultrasound is helping me, and that should encourage me get there without to much griping...yeah!!!  Oh, and the PT was impressed with the nips.  She is always very nice about trying to keep me covered up, but it's not always possible.  

    Sky, welcome!!!  So glad you found us.  

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  • Teacher64
    Teacher64 Member Posts: 840
    edited September 2014

    DIEP was easier than bmx for me. I just wanted cancer gone and to be home for Christmas. It had been such a whirlwind from diagnosis to surgery but I think the emotional impact was much more for the "cancerectomy" than DIEP. I felt so disfigured and like I had been filet-ed from armpit to armpit, except for one inch in the center of my chest. I guess I wasn't prepared for the lack of strength (I couldn't press down on a pump container of lotion.), the T Rex arms, the TE's, drains, anesthesia brain, or cording.  From the time I awoke, I hated the TE's because they hurt so. Waking up from DIEP knowing I was on the road to normalcy and getting my life back was huge emotionally. I knew I'd have brain fog, need pain meds, have to regain ROM, but mostly I knew I'd been through the hell of one 9 hour surgery, survived, and come back and I could do it again! I could tell immediately that the TE's were gone. I knew incisions would heal and eventually fade and that someday when I looked in a mirror, I wouldn't cringe and immediately look away. Now, that I have nipples, I like what I see. These perky breasts and new nipples aren't sensitive like my familiar, saggy old friends, but they are warm and don't feel like boulders in my chest. It will be six months since DIEP soon and I'm still adjusting to my new self because I'm still a work in progress, but it is progress. I am moving forward. 

    Yes, I love my PS (and his entire staff) because they are there for me and are giving me my life back.

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