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DIEP Flap Reconstruction 2017

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Comments

  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited June 2017

    So sorry about all your troubles, Wordlady! I am so sorry for your loss. I am glad you have found comfort here, and hope that you can move forward again at some point

  • MichCali
    MichCali Member Posts: 44
    edited June 2017

    Hi Everyone,

    I am new to this thread. I love all the information and appreciate everyone's posts.

    I am scheduled for my diep flap surgery on July 11.

    Jbdayton--thank you for the list of items needed--greatly appreciated.

    Sally32--I am using Dr. Chaiyasate out of Beumont for my surgery. I really like him and his staff. Please feel free to private message me with

    any questions.

    Some questions I have for those of you who had surgery already:

    Did you need help after the surgery at home? My husband is amazing but he will have to go to work.

    Did you have to wear button down shirts? I had a single mastectomy and couldn't lift my arm over my head for a few weeks so button down flannels were great.

    Thanks everyone--I appreciate all of these posts!!

  • MAPBB
    MAPBB Member Posts: 20
    edited June 2017

    Hello,

    Rlsteadman I had prophylactic for both breasts in February. I'm 60, have the BRAC2 gene and have watched two sisters die. I struggled with the decision for years and did a TON of research. Finally, when my 21 year old daughter tested positive for the gene, I decided to have the surgery. I see it as having chosen life over fear of surgery.

  • songbird72
    songbird72 Member Posts: 22
    edited June 2017

    MichCali--I bought a few button up shirts that I used for the first week or so after I got out of the hospital.

    I got out of the hospital on a Friday and my husband didn't go back to work until Monday. Then my mom came but that was mostly to run my kids around even though she did so a little laundry, etc for me.

    I could putter around and do things for myself. One of the hardest things was bit being about to bend down. So if I dropped something I couldn't always bend Oct and get it. 😁


    Question for this who have had the surgery --I'm almost four weeks out and when I stand up straight it is very tight from right under my rib cage down to right above my pubic bone. It doesn't hurt, it's just tight, similar to when I had cording after my Mastectomy . Has anyone else had this

  • Tpralph
    Tpralph Member Posts: 281
    edited June 2017

    i am two weeks out from my Diep and BMX and very tight from ribs down. Still walking hunched over. How long till you stand up straight again?

  • Beckyb2016
    Beckyb2016 Member Posts: 12
    edited June 2017

    michcali: I found that button up shorts were great for like the first 3-4 days. I just borrowed some of my Hubby's larger ones and they were pretty cute with my leggings.;)

    Songbird: I'm also about four weeks out and experiencing the same tightness, hoping it's normal and will lessen soon? I have to keep reminding myself to stand up straight. I am also experiencing a good deal of swelling under my arms and just above the tummy incision. I am getting ansy ti get back to "normal" so I may never overdoing a touch.


    Tralph: in my experience it was about the end of week 2 to the beginning of week 3 before I was standing 90-95% straight. You are on the cusp.


  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited June 2017

    Songbird, I remember being tight forever. It was a good 3-4 weeks before I could straighten completely. I noticed I was in better shape in the morning and got tighter as the day went on.

    I still feel kind of funky. I think it is just the scar tissue pulling at this point. I don't feel constrained at all.

    MichCali, loose fitting tops will work. You won't be able to lift your arms, but you can sneak them in from below if the shirt is stretchy and loose enough. Tanks should be manageable considering it is summer.

  • songbird72
    songbird72 Member Posts: 22
    edited June 2017

    Thanks for the input. Sounds like it's normal. Mine is also better in the morning and gets tighter as the day goes by.

    I'm standing up straight and was doing so probably 2 1/2 to 3 weeks after surgery.

  • jbdayton
    jbdayton Member Posts: 163
    edited June 2017

    LMichel, sorry for the late response. I am in Florida for 2 weeks visiting relatives and having some relaxation time.

    Many women have had reconstruction done after initial implants and I have seen many who have added a small implant as well.

    Can anyone in this group help her.

    I know it is discussed in the "NOLA in September" thread and probably in the prior year DIEP threads.

    I will see if I can find some links tomorrow to help ease your mind.

    I would definitely look into this, if I recall correctly everyone seems to be very pleased with their DIEP and implant combination.

    I know it can be very scary, I hope we can ease your fears.

  • Ali84
    Ali84 Member Posts: 9
    edited June 2017

    Hi Everyone,

    I had BMX and immediate Diep Flap reconstruction on May 25th at NOLA. Everything went well. Doctors pleased with results. I am wondering if anyone else has experienced a burning nerve type pain across their chest (around perimeters of flaps and in the nipple area). I've had the drains removed, which I thought might be the problem, but the burning /tingling pain persists. Even skin is sore to the touch, just to the underarm where the flaps end and leaves a sort of shelf. Is this normal? Everything looks fine, remarkably little bruising. Tylenol and/or pain meds do nothing for it. Not unbearable but definitely very uncomfortable. No fever. Anybody else experiencing this?

    Thanks.


    Wordlady, i'm so sorry you're going through this. Hope you continue to heal. I live in the same Walnut creek area, and while I can't do much now for you since I'm only one week out of surgery, pm me if you want to talk or if there is anything I can do at a later date.


  • Falconer
    Falconer Member Posts: 801
    edited June 2017
    MichCali,
    I am 6 days post-DIEP. I also had a repair of my rectus abdominal muscles since they had separated significantly following three pregnancies. I had a UMX last August, and although things went smoothly, my DH was hoping to have a home nurse help us once we returned home. It turns out our insurance covered it this time, so that has been a blessing: to have someone who isn't squeamish about changing my bandages or worried about doing the wrong thing to me. As far as other things with the help at home part, at this point I don't really feel like doing much. I've been reading, watching TV and that's it. Oh, checking the BCO boards. I've showered once since I've been home and did need some help with getting the shampoo out of the bottle. I haven't been very hungry; just trying to maintain my fluid intake.
    Last surgery I did make use of OxyContin and Flexerol. This time I am going thru with Tylenol and sleep. The repair to my abdominal wall hurts more than the other incisions. Since your situation is similar to mine- delayed DIEP following a UMX, I think you'll find the DIEP easier in some ways, at least perhaps emotionally so. I had a TE placed and it was so uncomfortable. I can already feel the difference.
    Good luck with everything and don't hesitate to ask more!
  • Falconer
    Falconer Member Posts: 801
    edited June 2017
    Ali- I did have a lot of nerve pain following the UMX last summer. There is something known as post mastectomy pain syndrome- if you search the boards you will find threads about it. Glad to hear you're healing well. Sorry you're still having pain.

    Word lady- my heart is with you. Thank you for sharing your whole story so that we can be informed. You sound amazingly positive after all you've been through. Gentle hugs.
  • Tpralph
    Tpralph Member Posts: 281
    edited June 2017

    mitchcali

    I was doing little things on my own when I got home. My husband took one day off work then he would place items that I needed for the day within reach. He helped me shower once but I purchased a shower chair and have a hand held shower head that helped.

    Home care nurse only changed drain bandages and took drains out.

    Good luck. Most do fine

  • Ali84
    Ali84 Member Posts: 9
    edited June 2017

    Falconer, Thanks for the response. How long before your nerve pain last summer resolved? I'm hoping since I'm only 10 days out that it's not going to be a chronic problem. What did you do for it?

    Thanks!


  • Olaf
    Olaf Member Posts: 133
    edited June 2017

    Hi, I am thinking of taking my implants out and having flaps. It has been 3 years since my reconstruction. I am not a fan of implants but was not given any options at time of bilateral nipple sparing mastectomy. I am considering NOLA. Anyone else do a swap?

  • Falconer
    Falconer Member Posts: 801
    edited June 2017

    Ali84,

    I'm not sure, honestly. I had a TE under my pectoral muscle that just bothered the heck out of me and some of the pain was also the result of radiation. I tried acupuncture which helped some, and yoga which helped more. I had limited range of motion bc of the expander, but yoga did wonders in restoring my musculature.

    There is a Facebook group called Surviving post mastectomy pain syndrome that you may want to check out that has more information as well.

    Best to you.


  • aquilegia
    aquilegia Member Posts: 54
    edited June 2017

    Hi - I had a right-side simple mastectomy and DIEP reconstruction at Kaiser Santa Clara on June 1 and returned home today. I had a super-easy time of it - I'm definitely an outlier based on the accounts I've read here. I never had any serious pain (except the Heparin shots, which are brutal!). I used the pain pump three times during my stay, otherwise just Tylenol. It's actually a disadvantage not having any pain, as I'm tempted to do way too much moving around and using my right arm. But I'd like some input from the community on several topics.

    First, the abdominal binder - I had horrendous itching and pain under the binder, which I complained to the nurses about. But it wasn't until I got home and could take it off that I saw it had made a bleeding sore under my reconstructed breast and an angry red rash on my back. I've wrapped a cloth around myself under the binder, but I'm supposed to wear this sucker for 6 weeks, so that isn't a good solution. Does anyone have suggestions for alternative binders, skin treatments to avoid rash, etc?

    Second, what's the best kind of tape to use on gauze pads to cover the incisions? The papery surgical tape the nurses used at the hospital is useless - it immediately comes loose.

    Third, my surgeon did not do a sentinel node biopsy - he was surprised I asked about it in preop and said they don't do a SNB for pure DCIS, Is that common practice? I did have a large lumpectomy in February that was DCIS only so I guess the risk of finding IC in the remainder of the breast is minimal, but still a bit worrying.

    aquilegia

  • Wordlady
    Wordlady Member Posts: 20
    edited June 2017

    Aquilegia, I had best success with 3M Micropore plastic tape. The paper tape just doesn't stick on me either! There is another kind of 3M tape that is more papery that my surgeon used, that has perforations for tearing it about every inch or 1-1/2 inches, but I couldn't see a name on it; maybe someone else knows. That stuck really well too. But overall I found the plastic one worked best for me.

    I have had to use a binder for the past week, which is 5 weeks out from my original surgery and 2 weeks from my revision, to try and get the rest of the fluid out from my right side so it can close up. Definitely an annoying garment! I took one of my husband's V-neck cotton undershirts and wore that underneath the binder to help with the chafing, particularly under my arms. I used to wear size 3X in a shirt and he wears an L undershirt so it was snug on me, which is what you want so there aren't wrinkles to cause welts on your skin. That might help you!


  • MichCali
    MichCali Member Posts: 44
    edited June 2017

    Hi Everyone,

    Thanks to Songbird72, Falconer, Bigsister-2, Tpralph, Beckyb2016 for answering my questions and all of your suggestions. I really appreciate it and feel a little more at ease.

    This group is so friendly and helpful!!

  • cheri444
    cheri444 Member Posts: 9
    edited June 2017

    Hi, Ali84. I am two weeks out from my bilateral mastectomy w/ DIEP flap recon. You described the sensation I am currently experiencing to a T! I can't find anything that relieves it and wondered, like you, if it's normal or not. I'm feeling and healing well, other than that. Just wanted you to know you're not alone. Hugs

  • Ali84
    Ali84 Member Posts: 9
    edited June 2017

    Thanks, Cheri444,. It does help to know I'm not the only one. I really hope it isn't what has been suggested here, post mastectomy pain syndrome. The description fits but I am hoping that this is temporary and not going to be chronic as PMPS. I think (am hoping) that we are too early in recovery to know if this isn't going to resolve sooner rather than later. I'm taking B vitamins and with ok of doc Arnica to see if that helps in nerve regeneration. I haven't been taking anything but tylenol but it definitely is painful.

    I had my BMX and diep flap done at NOLA although I'm home now. I'm seeing my oncologist here tomorrow. I'll let you know what she thinks.

    Hang in there!







  • cheri444
    cheri444 Member Posts: 9
    edited June 2017

    Hi, Ali84. I see my oncologist tomorrow in Burlington, too! I'll find out what my oncotype score was and what the game plan is from this point on. I'm also very hopeful that our pain is temporary (I think it is), since it's so early since surgery yet. I will try the Vitamin B and Arnica that you are taking to see if those help me, as well. Let me know how your appointment goes, and I'll do the same. Take care.

  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited June 2017

    Aquilegia, no need forsentinalnodes woth DCIS. Since the cancer was confined to the ducts there is no way it could spread. If you have to have cancer, you want DCIS.

    Be glad you were spared the procedure. I had invasive, so I had to have nodes on one side. They cut nerves to get at them s my underarm is numb. Sure feels funky when I wash or shave..

  • BigSister-2015
    BigSister-2015 Member Posts: 298
    edited June 2017

    I seem to remember a lady from the 2014 thread who had pain. I think she used light touch therapy to relieve it. Use a light, feathery to inch over the area.

    Cool compresses or ice might help. Be careful with ice. Since you don't have feeling, you can give yourself freezer burn.

  • cheri444
    cheri444 Member Posts: 9
    edited June 2017

    Thank you, BigSister. That makes sense....I had nerve damage from a surgery on my leg one time, and that was one of the things the physical therapist used was light touch. I'll look into that more. Hugs

  • Falconer
    Falconer Member Posts: 801
    edited June 2017
    bigsister, I forgot about the light touch therapy! Meds clouding my brain... but yes I too took a soft washcloth and re stimulated the nerves. Thanks for the reminder!
  • songbird72
    songbird72 Member Posts: 22
    edited June 2017

    Falconer--I just noticed that you are also doing Lupron shots and Aromasin. I was 42 at diagnosis and premenopausal. I've been on the shots and pills for about a year now and have not really had any major side effects---achy joints/stiffness after I'm in one position for a long while is the worst and that's very manageable. I do have hot flashes as well but they are mainly flushing---not the dripping with sweat version! I hope you are doing well on your meds.

  • Falconer
    Falconer Member Posts: 801
    edited June 2017
    I'm doing alright. Of course I went off Aromasin during the week of surgery and now I'm back on; back to hot flashes at night. But yes, all things considered I'll take it. Yoga helps, that is for sure. Do you have monthly or three month doses?
  • cheri444
    cheri444 Member Posts: 9
    edited June 2017

    Hi, guys. I posted this in the chemo thread, as well, but thought I'd check with you all, also. I need some opinions about chemo, as I will meet with my oncologist tomorrow. What would you do, if your final pathology showed that your 2 cm invasive ductal carcinoma was a grade 3--highly aggressive--with an 8 out of 9 Nottingham score, which is the worst (tubules 3, nuclei 2, mitotic rate 3, poor differentiation); yet your oncotype DX score was low--only 12? Does the oncotype score trump the grade and the Nottingham score? I'm worried, because my cancer grew from 1.5 cm to 2 cm in just six weeks, while waiting for my surgery, and then we found out it was aggressive. But I think my onc is going to recommend tamoxifen and no chemo, due to the low oncotype score. Do you think it's wise to not do chemo on a grade 3 with high mitotic rate of 20/10? Should I get a second opinion? I'm not crazy about the idea of chemo, but I don't want any regrets 10 years down the road either, and it's aggressive... Any input would be helpful. Thanks.

  • tnd22
    tnd22 Member Posts: 39
    edited June 2017

    Bigsister Thanks for sharing, you are being a real warrior. Take your time healing. I'm not having a DIEP until September, so I can't answer the questions really. Just wanted to encourage to hang on and take one day at a time.

    Actually, for everyone, take one day at a time. Fortunately I have a great PS assistant who answers questions and would encourage you to use that as a resource instead of just this board. Found out every surgeon is a little different.

    Rlsteadman - why for prophylactic when it's not necessary? Some of the reasons Tpralph listed- not worrying about it coming back on the other side, repeated mammos, etc. I had some suspicious areas though not hyperplasia on my left side, so I was going to have to have lumpectomy both sides either way. I wasn't that attached to my breasts so it didn't matter to me. I had talked to two ladies who felt the same way, not that attached. One had just one breast removed and she would recommend both for symmetry sake. I am smaller than I was and am glad for it. I don't feel like it's not me at all, even though I have expanders right now and hate them.


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