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DIEP Flap Reconstruction 2016

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Comments

  • ChelseaAmber
    ChelseaAmber Member Posts: 10
    edited March 2017

    Hi Ladies,

    I hope I'm posting in the right section. My mom is scheduled to have her DIEP flap surgery March 28th. I am beside myself with worry. I seriously commend all of you for being so brave and going through all of this. It is one heck of a scary journey.

    I feel like the fear and anxiety is slowly eating me alive.

    Can any of you share some positive stories or give me some encouragement?

    I'd also like to know what we're in for realistically. I know it isn't all sunshine and rainbows. I'm just hoping to find out that there is light at the end of this long tunnel.

    My mom has recurring ILC in the right breast. She was first dx in 2013, did 3 lumpectomies, chemo, radiation and was put on Tamoxifen. She now has ILC grade 1, stage 1, changed to Arimidex.

    We're waiting on the results of an MRI taken last Friday. Her CT showed very, very tiny spots on her liver. Her doctor said it could be something as simple as fat but wants to rule out anything dangerous. They're too small to even biopsy.

    If all comes back fine, she's off to surgery.

    My mom is 62 years old, 5'5",175lbs, and pretty active. We both run several hair salons together. We've gotten other stylists to work for us for the next 6 weeks, so I will be with her the entire recovery.

    I guess my questions are:

    -What was your pain like right after surgery? Was it bearable? (My mom had a hysterectomy in 2016 and she was in intolerable pain directly after the surgery. She's scared of that again. She even has a high pain tolerance.)

    -How long did it take you to get back to work and start feeling normal?

    - What kind of pain medicine were you given to go home on?

    -Do you regret getting this surgery or are you happy you did it?

    Thanks in advance!




  • stellamaris
    stellamaris Member Posts: 313
    edited March 2017

    Chelsea, I went through it at 66 and was back at office job in 4 weeks. I won't sugar coat it, 1st 3 days is a mess, but she will get pain meds. My PS checked the breast flap every hour for 3 days, so she may want to ask for sleeping pill. Things start feeling better on 3rd day. Won't be able to straighten up for a couple of weeks, and don't push it, you don't want to stress the tummy incision. She will like go home with drains. I was taught how to deal with them in the hospital. I had home nursing to check my drains, change dressings the first week home. I hope you have that available to you, it's very reassuring. Have lots of pillows for her to prop up on, and put under legs so tummy is not stretched out. Some ladies sleep in recliner. Good luck!

  • ChelseaAmber
    ChelseaAmber Member Posts: 10
    edited March 2017

    Stella,

    Thank you for the advice and insight. I haven't heard anything about getting home nursing. So I guess they'll just have to teach me how to do everything, unless I hear otherwise. One of my mom's good friends is coming to stay with us the first week we're home. So I'll at least have some help.

    Her MRI results came back today and her liver is normal! So relieved! So it looks like we're proceeding straight to surgery next week.

    Did the pain meds significantly reduce your pain? All I can think about is how much pain she was in from her hysterectomy last year. She was screaming and crying and trying to stand when she wasn't supposed to. I'm hoping this will be nothing like that.

    I will be sleeping at the hospital with her each night. How many days were you in the hospital?

    Also...are you happy with the scar on your tummy? My mom's concerned about that, too.

    Thanks again!

  • jcn16
    jcn16 Member Posts: 102
    edited March 2017

    Chelsea, it's wonderful that you mother will have your help following surgery. Everyone is different in how they recover. I had only mild pain in the hospital. During surgery they inserted a small tube (catheter?) below the abdominal incision that delivered a pain blocking medication. Thanks to that I used mostly Tylenol and only a little bit of the narcotics at night. The catheter was removed before discharge. At home I used Tylenol only. I was uncomfortable and it was hard to move but not the type of pain your mother had after her hysterectomy.

    Once home my sister stayed with me for two days and then had to go back to work. I was alone about 4-5 hours a day after she left. The visiting nurse would come to check the drains and healing daily. I had no dressings to change. I was able to go up and down stairs but limited it to once a day for the first two weeks.

    I slept in our guest bed with pillows propping up my arm and knees and made sure to take Tylenol right before bed.

    My job allows me to sit all day if I need to. Very different than a salon. Standing all day would have been difficult for me at 6 weeks.

    I am satisfied with my decision and would do it again. At 3 months I am back to Pilates and walking and manage the abdominal swelling by wearing compression clothing during the day (spanx,control top hose, running pants) and doing lymphatic massage.

    Best of luck to your Mom!

  • mtsalhuana
    mtsalhuana Member Posts: 2
    edited March 2017

    Thank you for your post, it has helped tremendously. I am having DIEP recon in 3 weeks and feeling very nervous.

  • RTChris
    RTChris Member Posts: 17
    edited March 2017

    My DIEP is scheduled for 14 days from now. I've been waiting for over two years for this and I am more excited than scared, but I do want to make sure I have 'all my ducks in a row'. I know I will be in bed for the first day or two. Has anyone considered doing a bowel prep diet (like for a colonoscopy) before surgery so there will be less need to go to the bathroom. Sorry if that is an akward question

  • stellamaris
    stellamaris Member Posts: 313
    edited March 2017

    Ladies, bless you all. Chelsea, the first couple of days I had a pain pump. All I had to do was squeeze, and the nurse checked out how much I was using, and it wasn't too much. The pain was manageable. I was in the hospital 5 days. The worst for me was the heat in the room. My PS believes a high temperature helps the healing. I asked specifically, and she said there is no real scientific proof, but a lot of plastic surgeons believe but helps and speeds the healing of the veins. This is microsurgery. This is not trivial. That is why they check the blood flow in the flap every hour, 24/7. My room was so hot, my husband almost passed out when he came to visit the first day. One of the night nurses apologized in advance, and said she couldn't come in because she was in menopause and couldn't take it lol. I am glad you are able to be there overnight, it will be a huge help, especially if you can cool her down with cool clothes. I asked for sleeping ills night 3. She may want to ask for them sooner. By day 3 she should be able to get out of bed and go to washroom.. here in Canada they had stockings on me too, and a pump attached to my legs to prevent clotting. That is why the first 2 days are so uncomfortable. No sleep, confined to bed, too hot. 3rd day they work on getting you up and it gets exponentially better every day after that. One thing they don't tell you is that they have to break a tiny piece of rib to make room to attach the veins. Don't freak out. Just know that this may cause shortness of breath and a some discomfort when taking a deep breath for a couple of weeks. I think it is better to know why you are experiencing that then wondering if something is wrong. Honestly, I am not crazy about my tummy scar. But I prefer it to the alternative, which is implants and foreign object in my body. My husband is not bothered by my scars. At all. I would know. And I gave up wearing bikinis many years ago 😉. I love, love my DIEP breast. I woke up with a warm, soft Monday that felt like me. Just waiting now for my nipple recon. Hugs

  • stellamaris
    stellamaris Member Posts: 313
    edited March 2017

    Ladies, bless you all. Chelsea, the first couple of days I had a pain pump. All I had to do was squeeze, and the nurse checked out how much I was using, and it wasn't too much. The pain was manageable. I was in the hospital 5 days. The worst for me was the heat in the room. My PS believes a high temperature helps the healing. I asked specifically, and she said there is no real scientific proof, but a lot of plastic surgeons believe but helps and speeds the healing of the veins. This is microsurgery. This is not trivial. That is why they check the blood flow in the flap every hour, 24/7. My room was so hot, my husband almost passed out when he came to visit the first day. One of the night nurses apologized in advance, and said she couldn't come in because she was in menopause and couldn't take it lol. I am glad you are able to be there overnight, it will be a huge help, especially if you can cool her down with cool clothes. I asked for sleeping ills night 3. She may want to ask for them sooner. By day 3 she should be able to get out of bed and go to washroom.. here in Canada they had stockings on me too, and a pump attached to my legs to prevent clotting. That is why the first 2 days are so uncomfortable. No sleep, confined to bed, too hot. 3rd day they work on getting you up and it gets exponentially better every day after that. One thing they don't tell you is that they have to break a tiny piece of rib to make room to attach the veins. Don't freak out. Just know that this may cause shortness of breath and a some discomfort when taking a deep breath for a couple of weeks. I think it is better to know why you are experiencing that then wondering if something is wrong. Honestly, I am not crazy about my tummy scar. But I prefer it to the alternative, which is implants and foreign object in my body. My husband is not bothered by my scars. At all. I would know. And I gave up wearing bikinis many years ago 😉. I love, love my DIEP breast. I woke up with a warm, soft Monday that felt like me. Just waiting now for my nipple recon. Hugs

  • stellamaris
    stellamaris Member Posts: 313
    edited March 2017

    rtchris, I don't think your body will have any inclination to have a BM before day 3. And considering the hospital food, highly unlikely you would be able to. Lol. Good luck warrior women! Hugs


  • jcn16
    jcn16 Member Posts: 102
    edited March 2017

    RTchris, Ask a nurse at your doctor's office about your bowel prep idea. It's an interesting one but there may be a reason not to do it right before surgery. Always best to ask.

  • trishyla
    trishyla Member Posts: 698
    edited March 2017

    RTchris,

    Is your surgery scheduled for April 4th? Me too! As long as my sentinel nodes are clear, I will be having BMX with immediate reconstruction. It looks like you're having recon to your right breast. I hope all goes well for you during surgery and that you have a speedy recovery.

    Trish

  • RTChris
    RTChris Member Posts: 17
    edited March 2017

    Stellamaris and JCN16, thanks for the advice - I have my pre-admission clinic tomorrow and my PS appointment on Friday so I will ask their opinion then.


    Trish - Yes, Smile As long as my surgery isn't bumped again I will be having my delayed DIEP the same day as your surgery. I hope your SNB comes out perfectly clear.


    More than anything I wanted immediate reconstruction when they did my mastectomy in February of 2015, but I knew I needed radiation. My cancer was aggressive (even though my nodes were all clear) and I needed to know that I did everything I possibly could. I have worked in the cancer hospital that I had my treatments at, as a radiation therapist, for about 18 years, and I have seen too many people come back with a cancer that had spread because they didn't have some form of treatment that the doctors recommended (whether it was chemo, surgery, or radiation).
    My mantra now is *NO REGRETS* I did all I could, and now I need to put this all behind me. The most important way for me to do that is to finally put my body back together.

    I have been following this thread *lurking* for months. I have found such great advice and encouragement here. This is the only area of the site I spend time in though. My personal working knowledge made being in other areas a little uncomfortable, but here I have lots to learn, and I am grateful for everyone here. You all give me hope.


  • Maya15
    Maya15 Member Posts: 112
    edited March 2017

    Good luck to those of you with surgeries coming up.

    To answer some of your questions:

    The DIEP surgery was much less painful than I was expecting. I had mastectomy/tissue expanders last June and that was excruciatingly painful. Chelsea, if your Mom had pain in the past, it's a good idea to talk to both the PS and the anesthesiologist before the surgery about what went wrong last time, so they can adjust the painkillers. I had a pain pump in the hospital and they sent me home with dilaudid. But once home, i didn't really need it and just took Tylenol instead.

    It took me 3 months to recover and be able to go out, but that's longer than most because I had complications due to chemo. Most say about 8 weeks, maybe 6 for those with office jobs. But I could take care of myself at home after about 3 weeks.

    RT Chris, you won't need a bowel preparation. In fact, what you have to worry about is constipation (side effect of both anesthesia and pain meds). I took both Miralax and stool softeners to the hospital and even with that I had no movement for 5 days. And straining is very painful after a DIEP, so avoid anything that will make things worse.

    I was in the hospital for 4 nights but my PS normally does 5. Check with your hospital if visitors can stay overnight, because at mine I was in an intensive care unit that didn't allow anyone else to stay.

    I am not particularly happy with the abdominal scar, but it's better than no reconstruction or implants.

    Also, I rented a recliner from a surgical store after surgery and it was the best money I spent. I would not have been able to sleep in a bed or go up and down stairs for the first 10 days.

  • jwoo
    jwoo Member Posts: 931
    edited March 2017

    I was just experiencing a lot of scar pain, thinking about my choices, and if i should have just gone with implants, when this popped up:


    http://www.npr.org/sections/health-shots/2017/03/22/521081964/breast-implants-linked-to-rare-blood-cancer-in-small-proportion-of-women?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=20170322


    While I'm still not pleased with my outcome or the side effects of DIEP, i'm still damn glad i did not get implants.


  • ChelseaAmber
    ChelseaAmber Member Posts: 10
    edited March 2017

    Stellamaris, Jcn16, & Maya15,

    Thank you so much for answering my questions and giving me advice. Thank you for being here to ease my worries, as well. Ladies, you are warriors! The 28th is getting closer and closer and our anxiety just keeps rising. I guess we need to just keep reminding ourselves that it is in the doctors' hands and we need to just take a step back and let them do their thing.

    On the plus side, my mom is having her surgery at UT Southwestern in Dallas, where we live. Her PS is Dr. Teotia and apparently he is one of the best in the country, I've heard. Does DIEP flap surgery on a regular basis. That's comforting to know.

    Stellamaris, I'm not happy to hear about the hot room theory. Yikes! I sleep with an ice-pack, fan on and A/C blasting at night during the summer here in Texas. I am very, very hot natured. So is my mom. But whatever works. I'll make sure to pack some light clothing.

    Best of luck to everyone with upcoming surgeries.

    And thanks again,

    Chelsea

  • farmerma
    farmerma Member Posts: 32
    edited March 2017

    Chelsea - All the best to you and your mom. I'd like to give you a positive view. Although I had a few days that I struggled, I still think DIEP was the best thing I could have done. It was much less painful than the two lumpectomies I had (you don't have the nerve connections you used to), and I think I was done with the prescription pain meds by the 2nd or 3rd day home. I did have some bowel movement difficulty in the hospital. They wouldn't let me go home until I had one, so I gave in to the suppository, which did the trick. Overall though, I thought this was easier to handle than the original surgeries and the radiation! I was back to doing work from home about 10 days after surgery (from the couch as opposed to the desk). Regular (short) walks help you to slowly straightening up. I had no problem with stairs from the first day I came home. I also slept in the bed from that first night, but with lots of pillow propping me up. I found it helpful to put a chair next to the bed as something I could use to pull myself up out of bed (since I didn't have the assistance of the hospital bed sitting me up). I could get myself out of bed after the first night. Just tell her to take it easy. It's a marathon, not a sprint.

    Speaking of marathon, I'm headed for my tattoo on Friday! It'll be almost 2-1/2 years since I was diagnosed, but I'm finally reaching the end of this journey (well, if you don't count the Tamoxifen for another 2-1/2 years). I hope they do a good job and can help me look as "normal" as possible.

    JWoo - I just saw that article too! Boy, am I glad I went the DIEP route and didn't go for implants!!!

  • cwayman650
    cwayman650 Member Posts: 63
    edited March 2017

    Hi Chelsea,

    I wish you and your mom the best of luck and blessings. I had my surgery in Detroit Mi. at Henry Ford hospital. After I was out of icu and moved to a room in step-down my room was a bit chilly. Not bad but they didn't keep it hot. So hopefully that won't be a problem for you gals.

    Hi Farmerma,

    What tattoo's are you having done? 3D nipples or coloring to finish the nipple reconstruction. Originally I was going to get the 3D tattoos but have since decided to get the reconstruction done and then later tattoo on the color. You were diagnosed the same year as me. My mastectomy's were in Sept. (yup, they did it in 2 surgeries). Seems like yesterday and like forever ago. I totally don't regret waiting for reconstruction. Actually never planned to do it and all of a sudden one day changed my mind. Now I'm so very glad. Tomorrow I see my p.s. and she is planning on setting me free. Then I have to work fri and sat. They will be long nights. ( I work 12 hr. shifts)

    This site has been a life saver for me. I don't know how I would have went thru all of this without it.

  • RTChris
    RTChris Member Posts: 17
    edited March 2017

    I found out at my pre-admission clinic today that I am actually getting a free TRAM flap instead of DIEP. |
    I guess my blood vessels won't work for the DIEP. Has anyone here had the free TRAM instead of the DIEP and how did you find the recovery?

  • DawnLee
    DawnLee Member Posts: 9
    edited March 2017

    Hi Ladies,


    My name is Dawn Lee, and I introduced myself a few weeks ago on the DIEP 2017 thread, but I've been getting so much help here that I wanted to say thank you. I'm scheduled for bilateral mastectomy and DIEP at NOLA on April 6. Does anyone here have any advice or tips particular to NOLA? It would be deeply appreciated.

  • ChelseaAmber
    ChelseaAmber Member Posts: 10
    edited March 2017

    Today is the day. We cried and said our goodbyes about an hour ago. My mom has been in surgery for about half an hour. Her surgical team seems to be fabulous. They promised to give me updates every 2 hours. I'm terribly nervous but hoping and praying for the best.

    Thanks for all of your advice, ladies. It means so much.

  • stellamaris
    stellamaris Member Posts: 313
    edited March 2017

    chelsea, keeping you and your mom in my thoughts. Let us know how it goes. Hugs

  • ChelseaAmber
    ChelseaAmber Member Posts: 10
    edited March 2017

    Last night was so hard. My mom's surgery took 10 hours. But all went well according to her doctor. They only took 1 lymph node from her left side (non cancerous side) and 2 from the right side that had cancer. Waiting on the path reports but the doctor said they looked like healthy lymph nodes.

    She had a really hard time getting out of pain last night so they put her on a dilaudid pump every 6 minutes. She finally got some relief after 4 hours and me being hysterical. I was able to sleep 3 hours in the ICU with her. Her flaps are taking. Her incision looks good on her tummy. The flaps are much bigger than I anticipated.

    If all goes well, her doc said she might go home Friday. I just don't want it to be too soon.

    Anyway, thanks for the thoughts everyone! It amazes me how much we can all go through.

  • stellamaris
    stellamaris Member Posts: 313
    edited March 2017

    so glad your mom got some relief. Hang in there, every day will get a little easier. I was in for 5 days. That seems to be the norm. She does need to take it slow once she is home (not that she will feel up to dancing anyway). She is lucky to have you.

  • jcn16
    jcn16 Member Posts: 102
    edited March 2017

    Chelsea, Your Mom must be so glad to have you there! Glad she's doing ok and I hope her pain lessens tomorrow.

  • RTChris
    RTChris Member Posts: 17
    edited March 2017

    Chelsea, I'm glad your mom made it through surgery alright. Hopefully they are able to keep her pain under some measure of control. I will keep the two of you in my prayers. Wishing her a speedy recovery


  • ChelseaAmber
    ChelseaAmber Member Posts: 10
    edited April 2017

    Thank you for all the love and advice everyone.

    My mom is slowly on the mend. Everything seems to be going well. Her pain is finally lessening day by day. She is 2 weeks out tomorrow.

    We received some daunting news today. Her pathology results came back. No cancer in the lymph nodes on the right side, the cancer side. However, they found cancer in the sentinal node on the left side. The left breast had no cancer. They believe the right cancer traveled to the left sentinal node.

    So now she has to have all of her lymph nodes removed on the left side and now we are looking at facing chemo for a second time.

    We thought the worst was over but we have another battle to fight.

    Has anyone had chemo after diep flap? What was your experience? How's the healing?

    We are so nervous.

    Thanks in advance.

  • Jiffrig
    Jiffrig Member Posts: 158
    edited April 2017

    chemo is not a problem, you do not want to radiate a newly constructed breast. I am having to wait 3 months after rads for recon. I did mastectomy first and placed expanders. Two part rather than all in one in case of surprises in surgery

  • stellamaris
    stellamaris Member Posts: 313
    edited April 2017

    hi all. I have a question for the DIEP ladies. I'm one year post uni DIEP on the right side and recovered well. The last couple of weeks I have noticed discomfort on the left side, especially when sitting. It is vaguely like the ache/itchy feeling from a broken vein. I also noticed that the vein running vertically from the waist up towards the breast is very pronounced - I can see and feel it (feels knotty). Anyone else experience this? I am surprised because it is in the good side, not the DIEP side.

  • jwoo
    jwoo Member Posts: 931
    edited April 2017

    Stella, I've not experienced that, but it sounds quite scary, and I'd go to the doctor ASAP. Good luck and keep us posted.

  • Beach4
    Beach4 Member Posts: 14
    edited April 2017

    Hi DawnLee

    Had my bilateral DIEP construction on the 6th as well. Hope recovery is going well.

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