Diep 2012

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  • julianna51
    julianna51 Member Posts: 438
    edited May 2012

    One comment about no rads with DCIS....not always true and I was one of the unlucky ones that had to have rads after a MX.   It can happen if you have a high grade DCIS and narrow margins.   One silver lining about having planned to go with implants rather than DIEP from the beginning is that if I had my DIEP surgery at the time of my BMX my new DIEP chest would have been somewhat compromised by the rads.  I have to believe that all things work out in their own way and now I'm having DIEP which is what I really wanted in the first place but was afraid to go against what my BS thought.   Guess I had to go through a few things to become strong enough to stand up for what I want!

    Snobird - were there any issues with the blood vessels on your radiated side when you had your DIEP?  

  • Snobird
    Snobird Member Posts: 593
    edited May 2012

    julieanna, I had no issues at all with my blood vessels. I was also told that I had several, good ones, the PS could work with and he marked them. My radiation was done in 2007 and my BMX/DIEP was done in 2010 so there was lots of time inbetween for healing.

  • julianna51
    julianna51 Member Posts: 438
    edited May 2012

    dressager - thank you for the info on the pre-op testing.  Wow!  That is very thorough.   I hope they are as thorough at Mayo where I am going.  You are next week!   How are you feeling about everything...getting more nervous or calm or numb....

    Snobird - thank you for sharing about your blood vessels not being an issue on your radiated side.   I will be almost 9 months out from the end of rads by the time I have my surgery.   My RO planned my rad treatment around my intent to have implants so I am hoping there is not much damage in there.   I never can tell if what I feel is these darn TEs under my pec muscles causing issues or if it is scaring from rads or what.

  • dressager
    dressager Member Posts: 77
    edited May 2012

    I'm feeling something between excitement and anxiety. I'm working way too many hourse in a very high stress environment right now so the month-long break is welcome... crazy, right? I'm not concerned about the surgery as much as I am about my sub-clinical lymphedema acting out while I'm semi-immobilized. I'm seeing my PT on Monday and have scheduled an hour long MLD massage with a certified lymphedema therapist on Wednesday, the day before surgery.

    I'm ready to git 'er done! Laughing

  • rtnyc
    rtnyc Member Posts: 155
    edited May 2012

    Is anyone else one month out from mx/diep? Wondering if how your feeling.

    I have nerve regeneration in my new breasts, can't lift my arms all the way and still have pins/needles in the back of my arms. so uncomfortable. Oh and did  mention skin area regenerating too so open wounds so still have to bandage up every day and not sleeping cause of all of the above.  I know in the end I'll be happier but when does that get here????????????? 

  • Robin108
    Robin108 Member Posts: 3
    edited May 2012

    This is my first time posting, so not sure if it's going to the right place ;-)  Anyway, I'm 5 1/2 weeks postop - diep BMX. Usual tightness in the abdomen, but intense pins and needles, nerve discomfort all across the chest. I've been on neurotin for a couple of weeks and no relief. Would appreciate other experiences and how long this lasts.

  • bdavis
    bdavis Member Posts: 6,201
    edited May 2012

    I am so sorry for your discomfort... I didn't really have "pain" in my chest so I can't comment on that.. But raising the arms does improve by week 7-8.

  • TexasRose
    TexasRose Member Posts: 740
    edited May 2012

    dressager- Good luck to you! I'll be thinking of you on Thursday!!

    rtnyc- I'm sorry you are having some issues. It is a hard recovery, but it really is so worth it in the end. I had my surgery on 2/14, so much further along and loving how I look now. I had Stage 2 two weeks ago. I didn't have any trouble lifting my arms over my head after my first surgery, but I didn't have lymph nodes removed. When I had my original MX back in 2009 and had nodes removed, lifting my arms was a problem. Are you doing the wall walking? I did have a small part of my incision that I had to do the wet-to-dry bandages on. Hated that. But it healed well and he just fixed it up in Stage 2. Looks great now! Hang in there!! Everybody is different but in my experience, it was probably closer to 8 weeks before I felt somewhat normal again.

    Robin108- Sorry, I didn't have that issue. I hope someone comes along who can share with you. And I hope you are feeling better soon.

    I am healing well from Stage 2. I didn't have a lot done (because my brilliant PS did such an amazing job to begin with!) and Stage 2 was so much easier! Really no healing issues at all from it. A little tired the first week from the anesthesia. It always wipes me out. Some bruising and soreness. But not bad at all. I see my PS again on Thursday for followup and then headed to the beach for the long weekend. Hope everyone is doing well. We've gotten quiet here!  

  • ReadingMama
    ReadingMama Member Posts: 573
    edited May 2012

    I had rads before DIEP also.  I was only six months out and it did cause some post healing problems for me.  The skin got super red and the breast size shrunk, probably about a 1/2  to 1 cup size.  I had HBOT (hyperbaric oxygen treatments) to help the healing.  I'm hoping the cancer side can be increased during Stage II to match, but not sure if it will get all the way there...  But I am still happy with DIEP and would not have done anything else.

    Stage II on June 4th!

  • fredntan
    fredntan Member Posts: 1,821
    edited May 2012

    Is it too early for me to start diep 2013 group? My PS told me that his buddies at MDAnderson just finished studies saying its best to wait whole year after rads to do diep..sigh...I was hoping for six months. Says there is less chance of failure. Told me sx would be 12 hrs for rt diep and new left mast. Dont even want to think about that. They better be worth it.

    Back to lurking

  • DoulaMom
    DoulaMom Member Posts: 21
    edited May 2012

    Hello all. I am four weeks post BMX+DIEP.  My left boob is happy and healing nicely, but I had a bit of a setback with my abdomen and Rt. boob. At 2 1/2 -3 weeks post op, i started feeling awful.  I knew I was going to feel beat up, but i started feeling really sick.  ran low grade interminent fevers with chills and neasea. Went to a DR. appt where they cleaned and debrieded my ab incision, and then that night i notice that i am leaking yuccy stuff from my tummy. after pushing on it, and getting stuff out for a half hour, we headed to the local ER. They did a culture and sent me back to UW to be treated for a MRSA infection! They opened up my ab again and washed everything out, gave me IV antiobiotics, and fluids. I was there three nights, but came home on Saturday.  Now I have a drain again (sigh...) and a reset on the "don't do anything" instructions. YUCK. Now I'm just sleeping alot. Just an updateand a reminder to follow your gut.  If you think something isn't right, get in checked out ASAP. Blessings and healing to all. Jennifer

  • goldlining
    goldlining Member Posts: 1,178
    edited May 2012
    hi fredntan There are a lot of 2011 DIEP and earlier who check in and post. No need to lurk or go away and be in another thread. Just makes sense to hang out where the action is until the turn of the year. All your "homework" can probably be done here with the sisters from 2012 and earlier. Good luck with having the patience for your wait. Waiting is tougher than the 12 hours (or whatever it ends up being).
  • rtnyc
    rtnyc Member Posts: 155
    edited May 2012

    texasrose: thanks for the info.  Just curious, what did your stage 2 involve.  my surgery was 4/23 and then 10 days later went back in 4 1/2 hr surgery to take out the staples on flap and stitchup the incinsions, get rid of excess skin (I think). So I guess that was surgery 1B?  I have one area on the left whch ispretty raw, to m almost looks like a piece is missing. Doc says she sees healing but I'm really worried. Will discuss with her at this weeks appointment Thursday (although I might call and go in earlier).

    Robin108:  I have the same pins and needles in the back of my upper arms and across my chest. there are times I also think I'm having a heart attack..but not.  Doc say its the nerves waking up and regenerating. What ever it is its really uncomfortable and keeps me up; no sleep at all.

    Jennifer feel better!! 

  • Ralsper
    Ralsper Member Posts: 352
    edited May 2012

    Jennifer: Who was your PS at UW?

  • iswimibikeirun
    iswimibikeirun Member Posts: 743
    edited May 2012

    Well, I just got back from my 8-week (well, really 9-week) post op visit.  I need to wait at least another 6 weeks before I schedule the revisions.  Apparently, the PS is surprised that I want to be a little smaller (or at least not bigger than I was pre surgery)!  Mostly it'll just be revisions (scars, dog ears, and belly button) and some lipo to reduce the breast volume and nipple reconstruction.  There's still quite a bit of edema, so I have to wait.

    He's offered nipple sharing or traditional nipple reconstruction.  I've always had "perky" somewhat large nipples (with a small aerola), but after the nipple sparing, the survivor has gotten much smaller.  Although I've never been that thrilled with the "headlights" look, I realize it's kinda part of me.  With nipple sharing, I think they'll both be tiny.  Has anyone else been offered nipple sharing?

  • julianna51
    julianna51 Member Posts: 438
    edited May 2012

    dressager - thinking of you and sending positive thoughts for your surgery tomorrow!  

  • TexasRose
    TexasRose Member Posts: 740
    edited May 2012

    rtnyc- My Stage 2 was pretty mild compared to some here. He lipo'd some fat to make righty the same size as lefty and fill in a few divots and a little shaping. He "tweaked" my belly button because he's a perfectionist and decided he didn't like it and he could make it better. It looked fine to me before Stage 2, but I trust him and I'm glad he's so attentive to detail. He fixed an area of necrosis that was about maybe 1 inch long and maybe 1/2 an inch wide that started out by turning black, we did the wet to dry, and then the scab fell off and it was kind of open and raw looking for awhile but healed nicely. Did leave a scarred area where it was though, so he fixed that. He had told me previously that it needed to heal and it did. And I had a large dog ear under my left arm from the original MX in 2009. He removed that skin and fixed that up. I think that's it. I did have two stitches in my ab incision and I'm not sure what he did there. I see him tomorrow for my first followup with him since the surgery. I have seen the nurse twice. That's interesting about you having Stage 1 in two surgeries. Not sure I've heard of anyone having it that way before.

    I'm a little worried because they still aren't the same size. Lefty is definitely still bigger. We did talk about how the body can reabsorb the fat sometimes, so I was prepared for that. I just hope we don't have to do anymore surgery. My husband doesn't see it, but he didn't see it before either. PS commented on it right away after Stage 1. Righty is just smaller. I didn't come this far to settle, but I sure don't want to have anymore surgery. We'll see. I have pretty much decided against nipples, at least at this point. Might do tats later. Or not. It doesn't really matter to me.

    dressager- Good luck tomorrow!! Here's hoping all goes well and you are up and healing before you know it!!!

  • spicedlife
    spicedlife Member Posts: 182
    edited May 2012

    Ok ladies, I am hoping someone is experiencing this so I can get some advice.   My stomach feels very tight still and where the scar is i can feel some knots.  Also, when I eat it feels like there is an alien moving in my stomach.  Also, I am still constipated.  i had surgery April 16th and he says everything looks great. 

    Thanks,

    Jenny

  • TJP1071
    TJP1071 Member Posts: 66
    edited May 2012

    jennyrjd...I had a BMX on Feb 16 2012 with the DIEP.  I still have knots in my abdomin incision.  Doc says they are scar tissue and I should massaage them when I can.  But it still is very sore where the knots are.  As far as the alien thing, when I was as far out as you I felt the same way.  Things are going good for me now, but it took a bit of time to feel normal!

    I am scheduling a  2nd round of surgery for June 5th.  Fixing some necrosis  in both breasts( large areas inside that have turned very hard), a leaking pin hole in the right breast incision, and some balancing in size in the 2 breasts.  Fat grafting from the flanks to fill in the top.  I looked around the site and did not see much abou the necrisos with others....let me rephrase...not like mine, most were having issues that came right thru the skin and were open sores...anyone have tissue that is hard, but stayed under the skin,  and had to be removed? 

    Anyone able to give me an idea of how the pain will be from the fat grasting in the flank area?  Worried about how it will feel.  

    Holding off on nipples till we can get everything to a better place.  Looking at sometime around sept.  

  • ReadingMama
    ReadingMama Member Posts: 573
    edited May 2012

    fredntan, based on my experience, waiting a year is probably a good idea, although it will be hard.  In my case this was not possible due to the active cancer, but if you have the cancer out, I can see it would be good.

  • bdavis
    bdavis Member Posts: 6,201
    edited May 2012

    TJP... I have necrosis and at stage II he tried to break it up, but I still have it.. So I am waiting a while (more than a year) and will have more fat grafting or a baby flap to resolve it. Lipo is fine.. makes you feel very bruised for a few days, and then fine.

  • Chris13
    Chris13 Member Posts: 254
    edited May 2012

    Did anyone leave small areas of necrosis in place? I have an area of approx. 1 1/2 X 1 1/2 that is semi hard. Moves around but not soft like the rest. The BS said it's fat necrosis and something could be done later. She wasn't concerned it was the serious kind of necrosis.

     Has anyone left necrosis in place? Does it ever resolve?

  • bdavis
    bdavis Member Posts: 6,201
    edited May 2012

    Chris.. I have had necrosis since surgery in July... The doctor tried to break it up in Nov at stage II, but it was still large and firm... Now, it is less firm and large, but I think I have lost volume as it may be reabsorbing. So my plan is to wait a long time... over a year, and then have a revision.

  • spicedlife
    spicedlife Member Posts: 182
    edited May 2012

    TJ - Thanks so much for responding.  I talked to the nurse today and I was told to get a very good cream and massage in small circles.  I am to do this on my breasts where there is some hardness and also along my scar.  I am glad to know the weird feeling in my stomach is normal.  I know we won't do stage two until after I have chemo.  He mentioned lipo?  from my love handles - I said feel free to and if he would like to take any fat from under my arms he can have that too.  My PS is also a perfectionist. 

    So, the hard lumps in my breast might be necrosis?  I don't really understand that.  Oh well, have a good evening all!

    Jenny

  • Kadee63
    Kadee63 Member Posts: 8
    edited May 2012

    thank you for your message.  I just felt like getting on line today and was suprised to see responses.  I woke up with pain in my lower right abdomen but was immediatley relieved.  My medical team was excellent and took above expected care of me.  I was able to take Ibiprofren even the first week which relieved my constipation from the pain meds. My pain worsen three days after i got home but I was trying to do too much.    I also took a stool softner .  I appreciate everyones response back to me.  i am interested in talking about the emotional side of all this and what happens next.  I still have one JP drain came home with 4. should get this one out next Wed.  Looking forward to that. 

  • dressager
    dressager Member Posts: 77
    edited May 2012

    thanks for the good wishes, texas. I'm 38 hours out of surgery and feel like i tangled with a bear. flaps look amazing but i have a fever and bp is high.

  • TexasRose
    TexasRose Member Posts: 740
    edited May 2012

    Hang in there girl! I think I had a fever too. I don't remember now. I definitely had nausea and a horrible headache. All from the pain pump. Once that was gone, I felt so much better. Tangled with a bear- love it and so true! So glad you are happy with what you see! That makes it all worthwhile. Rest up! Glad you checked in with us!

  • Chris13
    Chris13 Member Posts: 254
    edited May 2012

    The time goes quicker than you can imagine. Advantage of being in the hospital a few days is that they know how to manage fevers, high bp and other issues.

     You will feel better every day, baby steps.

  • Sheila1958
    Sheila1958 Member Posts: 7
    edited May 2012

    I just had a right sided diep at BethIsrael Deaconess in Boston with Dr Lee. I am less than 2 weeks out and I feel great and am very pleased with the early results. Here is my story. Diagnosed 4/2010 with IDC stage 2 R breast LCIS in L and I had bilateral mastectomy 7/2010 at MGH with immediate recon with TE's. Lost the R TE in Sept (cellulitis) and have been weighing my options since then. My MGH surg. only did Tram and I wanted to save the muscle so I choose Dr Lee after reading a post on this site. My hospitalization at BI was a quality experience. The nurse and doc's were great. I had 2 drains pulled after a week and I a half and I hope to get the last drain pulled next week. Pain was well controlled with morphine pump and then switched over to oral pain med the day before discharge. I was admitted on a Wednesday, surgery was about 7 hours stayed in the PACU overnight and I felt well enough to go home on Saturday. They did not push me- I made te call. I have had VNA every couple of days to make sure drains and incisions are OK. I only take half a perc at night for general discomfort and it helps me not toss a turn. We did buy a wedge pillow for our bed as I was not able to get comfortable the first 2 nights and slept in the recliner. The wedge really helped me make the transition to the bed and know I don't need it. I am going to have a silicon implant in my left side as I did not have enough fatty tissue on my abd for 2 breasts. That will be done during my stage 2 in Sept. I hope this posts helps someone thinking of DIEP. The first few days are challenging but it is definitely worth it and I highly recommend Dr Lee.

  • bdavis
    bdavis Member Posts: 6,201
    edited May 2012

    Sheila.. would you consider using fat from your buttocks for the other side?? I have both, the abs and buttocks. That surgery is a lot easier than DIEP also.

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