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2018 DIEP Surgery

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Comments

  • Runrcrb
    Runrcrb Member Posts: 202
    edited June 2018

    Island bound,

    I can't speak to all of your questions but from mastectomy with tissue expander until my DIEP surgery I never had a day with pain under 3 on the 1-10 scale. Hated the tightness every day. Hated that my muscle squeezed that TE every time I used my right arm.

    My DIEP was single side. Easier recovery than my mastectomy. If you are active and reasonably fit I wouldn't stress about the recovery. Each of us is different and doctors' protocols vary but i was home after two nights, drains out at 10 days and at work (desk job) in five weeks. I was off narcotics on day two and able to take care of myself upon returning from the hospital. Couldn't drive till drains were out but home alone most of the time.

    My doctor had me off all meds for 2-4 weeks. The Tamoxifen thing is probably due to concern of blood clotting- that's why I was off my AI. don't want anything to add risk of blood clots. I saw a PT after 4 weeks but after assessment, we agreed no PT needed- just rebuilding strength. My stomach is not numb.


  • Islandbound
    Islandbound Member Posts: 5
    edited June 2018

    Thank you, Runrcrb, for the information. I did well after each mastectomy, a few minor obstacles after this last one, but very manageable. So hopefully the DIEP will be well tolerated.

  • Lula73
    Lula73 Member Posts: 705
    edited June 2018

    Islandbound - I didn’t have implants first, but many of the women in the NOLA Group I’m a part of did. The vast majority of them have gotten relief from the hard breasts and pain that came with their implant recon. If you haven’t already checked out NOLA’s website, please do so (i included the link below). There is a lot of great information on there no matter where you are planning to have your DIEP done. They have an excellent educational video posted on their homepage right now titled ‘I wish I’d Known...’. Definitely worth the time spent watching it. The second link is to a discussion one of the founders of NOLA did for BCO today. (He’s the one who did my recon and i couldn’t be happier). Also a worthwhile listen. Where are you looking at having yours done

    www.breastcenter.com

    https://m.facebook.com/story.php?story_fbid=10160403681015043&id=212868260042&_rdr


    1) How long until I can be at home alone?

    About 2 weeks for me. You can safely plan on needing someone there 24/7 for at least the 1st week, then depending on your progress they may just need to come by and check on you a few times a day and help with showering.

    2) How many surgeries are typically needed?

    Typically 2-3 depending on if you need nipples reconstructed too. The first one is the big one. The second one is just an overnight stay at the hospital and return to work usually in 2weeks. Nipple recon is usually just a day surgery and return to work next day.

    3) Is Physical Therapy required?

    Not required unless you have lymphedema issues, you develop frozen shoulder, etc.

    4) What are "dog ears" and what typically needs revising?

    Dog ears are sections of skin that stick out a little or flop over where they have reconnected your hip tissue usually. However they can be anywhere they see an incision back together. During stage 2, they will revise your scars and remove any dog ears as well as sculpt your lower 1/2. This is in addition to any revisions to your breasts. *Not all centers address your lower 1/2 after stage 1. That’s one of the questions to ask when you’re interviewing PSs. NOLA does address the lower half and gets it covered by insurance

    5) I've read about numbness in the abdominal area. Is it similar to the numbness after a mastectomy? Is your whole abdomen numb?

    This seems to vary person to person and likely has to do with each individual’s nerve anatomy. I personally have very little to no numbness on my abdomen and the vast majority of my breast skin has feeling as well (but not the nipples).

    6) How does taking Tamoxifen affect the procedure and why do I have to be off of it?

    Tamoxifen can affect the healing process in a negative way after surgery. It also carries risk of blood clots thereby increasing the risk of blood clots from surgery even higher. You usually come off it 2 week’s prior to surgery and stay off it til the surgeon tells you it’s ok to restart.

    7) For those who have had previous implants...My implant/TE are under the muscles. PS says he will put the muscles back where they belong during DIEP Flap reconstruction. Will the tightness go away after I am healed? I am assuming the tightness is from the muscle pulling.

    Odds are the muscle tightness will go away. However, animation of the chest muscle may occur. I would ask how he plans to “put the muscles back where they belong”. If he is racking it back into place, it is possible that he may tack it too tight. Definitely something to ask.

  • suburbs
    suburbs Member Posts: 398
    edited June 2018

    Hi Islandbound. I will preface my responses with the caveat that everyone is different. I had chemo first and had never had a major surgery prior to BMX with immediate recon.

    1. The last drain came out week 4 post surgery. By then I was weaned off pain pills and could drive. I had someone with me staying at my house until that point. There were appointments to have drains removed weekly. It was very helpful to have someone doling out pillls and keeping track of drainage.

    2. Two surgeries would be the minimum typically.

    3. Physical therapy is not required but would be a great idea and length of treatment would depend on your physical condition. Starting anAI post surgery did not help me in my recovery.

    5. Sections of my abdomen in the area above the scar line are still numb but the feeling is returning and everyday gets better.

    Good luck with your treatment plan and surgery.

  • Islandbound
    Islandbound Member Posts: 5
    edited June 2018

    Lula 73

    Thanks for answering my questions. The websites were helpful. I am thinking of having the surgery in Birmingham, AL at UAB.

  • Islandbound
    Islandbound Member Posts: 5
    edited June 2018

    Thank you, Suburbs, for the information.


  • carmstr835
    carmstr835 Member Posts: 147
    edited June 2018

    Oh I am getting a bit nervous now. My caregiver just bailed on me so I will be doing this alone ( bilateral DIEP delayed). I can do it. I did all my chemos alone and my 7 weeks of radiation alone, I can handle this too. I wish the Doc would order a nurse for me though, then I would feel a bit better having someone come each day after I get home. He doesnt think I will need a nurse, or a walker, or a hospital bed, not even a raised toilet seat. My insurance will cover whatever he orders, but he has to order it in advance or it won't be available in time. I am a veteran and they are notoriously slow to approve things. I go in 3 more weeks. He seems to think I will be just fine by myself..hmmmm.

  • Lula73
    Lula73 Member Posts: 705
    edited June 2018

    carmstr-I personally think your doc is nuts. If he won’t irder a nurse, how about a CNA to come by at least once a day to help with dressings, drains and personal care. 3rd day post op is when we’re ususlly released from the hospital. If you can’t do it all yourself by then he needs to order something. NOLA requires someone to be with you 24/7 upon discharge for at minimum the next 4 days after discharge. Why, you ask?

    1) what if you throw a clot?

    2) what if you pass out in the shower/on a bathroom run/on your multiple short daily walks/while getting a bite to eat?

    3) what if you are vomiting uncontrollably from the pain meds-who is helping get you and everything else cleaned up?

    4) what if you fall while walking/on a bathroom run/on your way to or from the kitchen for food/in the bathroom/in the shower?

    He needs to order someone at least from hospital release date until post op appointment at the minimum. I’d tell him if he won’t and something happens it’s on him and you want him to write it on the discharge papers himself that it’s ok to go home alone with 0 assistance.

    Sorry-it’s things like this that don’t make any sense that make me mad. I’m mad on your behalf.

  • carmstr835
    carmstr835 Member Posts: 147
    edited June 2018

    Thanks Lulu, but they did say I don't go home for 7 days and he will make sure I have everything I need. I just like to be prepared.

  • suburbs
    suburbs Member Posts: 398
    edited June 2018

    carmstr835, you may not be able to drive. Definitely think your advocacy for yourself, makes sense and should not be dismissed. Ask to speak to a nurse navigator or social worker please. Explain that you respect the surgeons mastery of the OR but your home health care is a great concern to you and should be addressed.

  • 2002chickadee
    2002chickadee Member Posts: 79
    edited June 2018

    A few ladies closer to surgery have remarked on how tight their bellies are and back pain. It's crazy! And it gets better! I highly recommend taking walks as much as you are able to, I found that made a huge difference in keeping things limber before I could get back to any kind of more significant exercise, and helped keep my back issues under check. The skin also looks really jagged where it's stitched, as it releases the tightness it smoothes out flat.

    Some have asked about yoga. I would first and foremost make sure you are following the movement restrictions set by your surgeon, those will differ for everyone. I started PT 4 weeks post-surgery (simultaneous MX and DIEP). Around 3 months post-surgery I began attempting a plank again. At 4 months post-surgery (now) I am proud to say I can do 2 sets of a 35 second plank, although my abdomen is still weaker than it was pre-surgery (when I was actually in quite good shape!). Also at 4 months I have full range of motion in my arm, I do need to do a few stretches every day to keep the tightness away, and that side is much weaker than my left now when doing strengthening exercises. (I've flipped weak sides as my surgery was on my right side, which was my dominant side.) I did exercises as prescribed every day for 3 months to get back to full range in the arm. The stomach required a lot of massaging etc. in PT and by me but it also no longer feels like a bowl of rocks.

    I was in the hospital 5 days, drains out 1 week later, off of oxycodone within 2 weeks of release, took an occasional tramadol for a month or two after that, still on Lyrica (nerve drug, like gabapentin), back to work at desk job after 5 weeks. I am thankful to have a flexible employer who lets me work as home as needed during the post-surgery time and now during chemo.


  • cev20
    cev20 Member Posts: 41
    edited June 2018

    Hello Everyone,

    Just wanted to get on the schedule. I'm going in for my UMX w/DIEP on Tuesday, June 26. I've been reading all your posts and they help me with the anxiety I'm experiencing as the day gets closer.

    Thank you all again for sharing your stories. They have been a great source of encouragement.

    😙

  • suburbs
    suburbs Member Posts: 398
    edited June 2018

    cev20, the anxiety is normal. There is no doubt that the experience of DIEP was no where near as difficult as I had imagined pre-surgery. Sending healing thoughts. Please keep us posted when you can

  • cev20
    cev20 Member Posts: 41
    edited June 2018

    Thanks, Suburbs.

  • TWills
    TWills Member Posts: 509
    edited June 2018

    Gotcha on the schedule Cev20! I've missed a lot the last few weeks, please remind me if you'd like to be added to the schedule:)

    Hope everyone is doing well!




  • SoniaL
    SoniaL Member Posts: 85
    edited June 2018

    Hi Twills...thanks so much for this group - so helpful to read about others' experience. You can add me to the Stage 1 schedule for August 22nd. Dr Robinson & Dr Korn in Charlotte, NC. Thanks!

  • TWills
    TWills Member Posts: 509
    edited June 2018

    Gotcha down SoniaL! I’m so thankful for everyone that is willing to share their experiences. I learned so much and felt so supported and that’s all I would hope for everyone here. Good luck while you prepare, I’ll be right behind you with my Stage 2:)


  • TWills
    TWills Member Posts: 509
    edited June 2018

    I have to say that this growing list is amazing, our experiences are so very personal and I love seeing the support we are giving each other. It really makes such a difference while navigating these difficult decisions. We are all so brave to share the good, the bad, and the ugly.

    If anyone would like to add where their surgeries were done and the Dr's that performed them let me know. It's comforting and amazing to see successful DIEP surgeries being performed all over the US.

  • bella2013
    bella2013 Member Posts: 370
    edited June 2018

    TWills, you can add me for stage 2 surgery on July 20th.


    Thanks

  • TWills
    TWills Member Posts: 509
    edited June 2018

    Gotcha down Bella, that will be here before you know it, Congrats!

  • trishyla
    trishyla Member Posts: 698
    edited June 2018

    Please add me to the list as well. Finally, after a fourteen month delay, I'm scheduled for my stage 2 surgery on July 26th. Can't come soon enough.

    Trish

  • TWills
    TWills Member Posts: 509
    edited June 2018

    That’s awesome Trishyla, what a long wait!

  • TWills
    TWills Member Posts: 509
    edited June 2018

    I know it has a lot to do with exactly what you're having done during stage 2 but how long should I plan to take off work? Mostly having fat grafting from my sides done during this next surgery. I'm a hairstylist so I'd be on my feet all day and it can be quite strenuous.

  • Lula73
    Lula73 Member Posts: 705
    edited June 2018

    about 2 weeks is standard.

  • Justkeepmoving
    Justkeepmoving Member Posts: 57
    edited June 2018

    Hello Ladies...

    I can't remember if I introduced myself on this post yet (my head has been spinning this past month!)... I'm having a bilateral mastectomy with immediate reconstruction with DIEP flap.

    I'm 49yo. I have 2 children (13 and 11 yo). I still don't consider myself as someone who has breast cancer - I think because the spot that was biopsied was DCIS so I'm hoping that the mastectomy will take care of everything. The pathology will determine if I need any type of treatment post op. One day at a time. This has been such a strange experience - I still don't believe this is happening.

    I'm grateful to have the option of double mastectomy with DIEP. I've been reading through all of your posts and learning a lot. I'm trying to get ready the best that I can. Starting to feel anxious as the day approaches... Am I ready? What should I be doing???

    I feel so unprepared!! (Surgery date Friday June 29.... Less than a week away!!)

  • parachutes
    parachutes Member Posts: 34
    edited June 2018

    2002chickadee, you must have been reading my mind as I've been lying in bed resting getting teary eyed because of the look and feel of my body. My recovery is going okay but I really hate looking at myself in the mirror. I've been asking myself if it has been worth it. I asked about yoga so thank you for answering and giving me some hope. Right now three months seems like an eternity for this outdoorsy gal.

    On another note...has anyone had to deal with a surgeon that is not reassuring

  • Teaberry11
    Teaberry11 Member Posts: 66
    edited June 2018

    Hi all!

    I am nearly 3 weeks post delayed DIEP- finally had the last drain removed yesterday! It was only removed because doc doesn't like it in longer than 3 weeks it was still putting out around 40-45cc a day— I am now wearing the oh so snug abdominal binder 24 hrs a day — yesterday my tank was soaked with fluid even though I had the drain site covered with gauze .. thankfully today it is dry - but I do have to go back to doc next week to check for fluid build up. I will say back pain eased after about 10 days and I got more upright. I'm walking pretty straight now and for good distances just slow going. My incisions look great I feel very lucky in that. I haven't taken any pain meds for the last week - it's more uncomfortable than painful at this point.

    Parachutes - in what way is your surgeon not reassuring? With your final outcome? I have not had that feeling with my surgeon - just the opposite actually I am happy with what I see (although I am a road map of peeling durabond ) and the PA said my tummy tuck looks better than most she's seen who do it for cosmetic reasons! I'm very excited to get to stage 2 and the final result!

    On the other hand my Occupational Therapist for my LE symptoms does not give me a reassuring feeling. I had upper arm swelling before and after my surgery and have been wearing the compression garment daily. To me it seems to be getting much better, when I saw her yesterday to pick up the night garment she ordered and asked how long I should wear the garments once the swelling has subsided — she just gives me a blank look and says I need to get a referral once my PS releases me so she can reevaluate ... so what does that mean? No advice or opinion until I get a referral to see her? She said she released me from my previous referral because of the surgery. Oh well ..

    Justkeepmoving - stay positive! I’ve had some setbacks with positive nodes but in the end the DIEP recovery is going much better than anticipated! You’ve read the posts here and these ladies know what they are talking about. Take it slow and let your family help you! And if the doc offers a home care nurse for drain care - say YES!!

    Twillis and Bella. - I've missed hearing from you - hope that means you are both doing well as you prepare for Stage 2!

  • Justkeepmoving
    Justkeepmoving Member Posts: 57
    edited June 2018

    Thank you very much! I am staying positive (although I admit to crying when I'm alone in the car...). I don't even go there thinking about positive nodes...

    Thank you all for sharing your experiences - great information here! I love all of you ladies!!!

    My job has me on the schedule 3 weeks out... My surgeon said about 4 weeks recovery. I've never had surgery before so I don't know what to expect. I'm a tough girl but I'm not going back until I'm ready!

    I'm in good shape. 49 yrs old.Slender, somewhat athletic. How long is recovery? (Bilateral mastectomy and DIEP flap)

    And my surgeon said they are not cutting the abdominal muscle - is this true? Confused by some of the posts here. I don't want to compromise my core strength.

    Hugs!!! Xoxoxo

  • Justkeepmoving
    Justkeepmoving Member Posts: 57
    edited June 2018

    ....and Carmstr835... I'm concerned about you. I hope you find a way to get help when you are home. If the dr or medical services won't/can't help you maybe you can reach out to a local church or similar? Someone needs to help you with daily living (food, clean up) and just making sure you're ok!

  • carmstr835
    carmstr835 Member Posts: 147
    edited June 2018

    The DIEP does not cut through your muscles. You should not have a problem with your core strength unless there is something unusual. My surgeon did say it is a possibility the peripheral arteries may not be big enough and he might have to take a small amount of stomach muscles. I am very concerned about that, too.

    Thanks "Just Keep Moving" , for your concern. I am talking to friends and hopefully I can get someone to come once a day just in case. I do not however have anyone for the days after I am discharged. Surgery is Tuesday and discharged on Friday. So I will have to care for myself and strip my own drains days 4,5,6 Saturday, Sunday, and Monday. Back home by Tuesday. If I can get my PS to order a daily nurse to strip my drains at home I would feel much better, but I won't know until the surgery on Tuesday. He did say he will make sure I have every thing I need.

    Does anyone think they might have been able to strip their own drains if they had to? I am trying to remember after my mastectomies if I could have. I just can't remember if I could have...I had my brother doing it twice a day for the first week to 10 days. I remember thinking I could handle this. But probably it was after the first week or so. I was staying at his house then and went home after 2 weeks.


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