DIEP Flap Reconstruction 2016
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Donnar25, thanks for sharing the details of your post surgery experience. I thought I was crazy but was also worried about how to manage trips to the bathroom! All the stories posted here are encouraging and helping me to overcome my fears. I think it's a testament to how strong all of you women really are-I admire you! I'm actually telling myself, "if they can do it, I can too!"
Hugs to all!
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Katiebird, you'll be amazed that getting around is not too much after this surgery. The nurses will have you roll to one side and get up sideways so you don't have to use your tummy.
At home I used a 7" wedge pillow along with many others to sleep at an angle. After a week or two I was able to transition to sleeping flat.
Have lots of pillows! I got six and used them all. I had a couple under my knees and one under each arm.
They sent me home with a walker that I used the first few days. It took some of the strain off of my back and helped with balance, but I stopped using it fairly soon.
It is all a dim memory now. I am so happy with the results.
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Regarding this big surgery, the ladies on the 2014 DIEP thread said, "You don't have to be brave; you just have to show up." I took that to heart! I figured I had enough in me to show up. It was enough! :
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Surgery report: Surgery was Wednesday, 6/29. It lasted 8 hours (uni-lateral mastectomy with DIEP). Went directly to ICU and stayed there until late Saturday when I got transferred to a regular room. ICU staff was amazing! The flap was attached to a monitor to check oxygen saturation 24/7 (my surgeon even had an app on his phone that kept him informed of my numbers). They used a doppler and checked the blood flow every hour. When they got me out of bed on Friday morning, they pulled the catheter (it was too uncomfortable to sit up with it). The oxygenation of the flap dropped pretty severely after I had been up for about an hour, so doctor confined me to bed the rest of Friday. Was not able to pee, so had to get re-cathed several times to empty the bladder (not very fun and VERY uncomfortable having a super full bladder and not being able to do anything about it). Final;y got that going on Saturday and off to regular room. All rooms at this hospital are private rooms and have a couch so that family members can stay with you. More "potty" issues on Sunday with being unable to have BM, but a suppository got that moving too. Did i tell you nursing is far from a glamourous job? Still monitored with doppler, but went to every 2 hours, then every 4. Did not enjoy the shots they gave me to prevent blood clots. The first one went in my stomach, but the nurse commented on how little fat I had there so she apologized for how it was going to feel. Are you sure you're talking about MY stomach? After that one, they started putting them in my thighs, which still burned a lot, but was at least better than the stomach. Took numerous walks on Sunday and today. Discharged around 2pm today.
I am amazed at hos round and warm my breast is now. The PS reported that this was absolutely my best option. Once he got in there and saw how badly radiated the breast tissue was, there just wasn't anything else he could have done with it. Nurses kept commenting how great all the incisions were, how impressed they were with the doctor's work. One nurse even said she needs to have the same thing done and will be contacting my PS for a consult. This was the first time she had taken care of one of his patients and she loved his bedside manner and, obviously, his work.
Have my follow-up tomorrow afternoon with the PS. He hopes to take out the one breast drain and leave the 2 abdominal drains in till the end of the week. If the drainage is minimal, he's like to remove them before the weekend for my comfort. Those are really not bothering me much. The breast drain has that one darn stitch holding it in that seems to catch on everything and pinches like craze. I'll be glad to see that go.
Overall pain has never been more than about a 6 (on a scale of 1-10). I'm doing 1 Percoset every 4 hours and that's keeping the pain under control. He's got a prescription for ibuprofen as well, so I'll try to switch off to that as soon as I can.
So far so good! I'm really wishing I had done some before/after pictures!
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farmerma, glad to hear you have made it to the other side. The first couple of days were the roughest for me too. Especially the hourly checking with the Doppler. Knowing what I know now, I would have asked for sleeping pills. Wishing you a speedy recovery! Hugs
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farmerma, your post is reassuring to those of us still facing surgery. As you are recovering, please keep me informed of your progress and any info that may be helpful to know before my surgery date, or if you've found anything at home that helps with your comfort and care. It sounds like you had a wonderful group of medical care providers. Wishing you all the best and a speedy recovery!
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Farmerma, congrats on being on the other side! Sounds like your doing great, don't overdo though
One thing that I havnt seen mentioned that I had to get my DH to get me was an eye mask. I had a shared room and it seemed the lights were on all the time. I did ask once and was told that the nurses needed to see readings etc. All I wanted to do was sleep but found I couldn't because of the light.
I have a question for stage 2'ers, I need to get a flank binder and see that you can get a 9" and 12"- any advice? Is there a style (one closure or two?) or make you would recommend? Thanks ladies. My surgery is moved up to July 12!
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farmerma - I remember being amazed at my warm round breasts too! Congrats:) and keep on healing and resting!
slv58 - best wishes on your upcoming stage 2. Wow...Just around the corner. Keep us posted. I am not doing mine til the fall.
hey Stellamaris! - hope you are enjoying some summer hikes and picnics .... it's been rainy here so some lake time, but doing neglected gardening around the house etc too. My boob that got radiated was doing very well, but it's been feeling tighter lately, so heading back to my favourite physio tomorrow. Not sure if I am slacking on my stretching or starting fibrosis...... or both:(
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Farmerma- sounds like you have everything under control. I think the one thing I learned from this forum is TAKE IT EASY. I haven't had any problems and I think I owe that to everyone here. I did absolutely nothing my first three weeks. This is the start of my fifth week. My energy is really low, but have managed to clean my house, cook, water garden and have been swimming, little things at my own pace. Good luck to you with a speedy recovery.
Slv58- stage 2 will be here before you know it. Please keep us posted. Im guess my stage 2 will probably be in the fall, I will be following you very close to know what to expect. Im curious your in ontario.... what area was your hospital?
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Taag4, I live between Newmarket and Barrie but chose to go to Sunnybrook for all my treatment. I'm so happy to hear that your bouncing back! Just dontoverdo it and know this will all be a memory before you know it!
I will update everyone but will be having a bit more done during procedure. The right side of my abdomen will be re-attached with some mesh. Apparently weakened stomach muscles is not uncommon after diep. So she will be going back in and hopefully this will solve the issue. My recovery will be 6-8 weeks because of this, but I'm ready and looking forward to being that much closer to being finished!
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Evening ladies. Hope all are well on their way to healing and feeling good.
Taag- so glad to hear you have made it with no issue!
Cabland (? sorry. too lazy tonight to scroll haha) The honey treatment worked awesome in some areas and seemed to not work at all in others. One particular place responded amazingly well!!
Got a good report at the Onc's today. Blood work and everything came back good. I called my PS's office today for more pain meds. "The PA is not comfortable writing you a pain med script"
Does your PA know I have holes in my stomach? Ugh. Ok. But you have to drive into the city to pick up the script.
Having RX experience, it's a good law. But some consideration needs to be made for single mothers, with holes in their abdomen, who can't really drive into the city (1hr away). So I got them from the Onc's NP. Pfft
A NP friend of mine came over Sunday and gave me more precise packing instructions. For my abdomen, I am now using hibiclense and saline. Hibiclense wash to the trunk 2x a day. And a hibiclense packing during the night. The other 2 dressing/packings are to be saline. It has yielded amazing results! I think the packing technique has made a huge difference in my discomfort level. The hole in my left breast (about the size of a pencil head) has gotten smaller and less productive. The wound on my right breast, is a more slow going thing
It was a wod of stitches that came out, and under was a gaping wound *sigh***Talk to your Dr before using any alternative medicine, other than prescribed, on your wounds. All patients and their wounds are different. For a while, I had 3 different types of treatment going for the varying types of wounds
Updated pics:
Pardon the potato quality. This is one of the worst areas where I tried the honey. Remarkable results. This was not a hole, just a very angry rogue stitch spot.
(and my boob nose haha)
Last night. Now there are 4. Well, 3 technically. One is only separated from another by a small piece of skin. But don't they look so clean!?!? Less red and irritated. Much better!!!
The belly button responded very well to the honey treatment. Looks awesome!!!
My little 'peeing' hole on left breast. Saline dressing here. I did use honey for a short time. The honey seemed to draw out any infection that couldn't be seen in more places than one.
A closer, clearer shot of the belly button. The raw, unprocessed honey did amazing!!
My right, right side of breast. I may start applying honey here again tonight. I had been using the honey, and it drew the stitches up, and gook out, and this is what was under all that
Hurts like a *****. But no drainage. Clean.
Hope all have a good night
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Simplicity, I'm so sorry your having such a rough time but glad to hear things are getting better and healing. Gentle hugs and positive thoughts! Your one strong awesome woman!
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Aw thanks SLV58. It's really not as bad as the brain wants to interpret it. More of an inconvenience and uncomfy of course. Lots of money being spent on wound care right now, but at least I can buy what I need, right?
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Simplicity, hang in there. I am so hoping the healing continues to improve. You have pulled the short straw on this one for sure. You're attitude and positivity and spirit are inspiring hugs!
Phoebe, keeping my fingers crossed you won't have any issues! I am doing great, but a little nervous, as my bone density came back osteopenia (-2.5). MO sending me to bone Dr. I can't help being nervous that it is bone Mets, but if he suspected that he would have told me, right?. Hoping for the best, but bracing for the worst. The reason I'm nervous is because I have been having issues with urgency/frequency of urination. I mentioned it and he said he does not think it is the letrozole, but it is definitely a listed side effect. Oh well, fingers crossed. Stay well, hugs
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Thanks Stellamaris. A lot of the ladies (and gentlemen), on this site, and an amazing group of friends around me has really helped me cope
Will be thinking of you. Were here. Get to see and meet some of my single mom friends from an online support group!! Celebrating ones new marriage this Sat in PA. Anyone near PA? Lol
StellaMaris, you mention abdominal weakness after DIEP? Did anyone do occupational therapy after surgery? I went and visited my OT team today. Great team and miss our talks haha And them pushing me. I do best with a push. Anyway, going to ask for a referral to go again. Build my strength back up
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simplicity, it wasn't me with the abdominal weakness. I am actually quite strong. My DH is my trainer, lol. He had me back on the mountain 1 week post op. Granted, I only walked to the trailhead, but at 3 weeks post op I was hiking up . hugs
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Oh no! Sorry. Wrong thread maybe? Lol brb
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Good report at PS today. He removed the breast drain, just leaving me with the 2 abdominal drains. Next appointment is next Tuesday to remove those. Can't wait! Feeling pretty good considering what was done just a week ago!
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Oh it was slv58. Ooops.
Glad some drains are gone farmerma! Hated those things
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ugh
I didn't mean to delete
It was slv58. Lol Sorry
Farmerma, glad youre down some drains. Hate those things!!
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yes, Simplicity it was me. I noticed I had developed quite a noticeable abdominal bulge on the right side- no pain. I was checked for a hernia which came back negative. My PS said that it wasn't uncommon for the stomach muscle to detach after diep, so she will be going back in to hopefully fix with mesh. It doesn't bother me other than visually but I figured I would try once to have it repaired. I may have overdone it while healing
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Stellamaris wishing luck with your bone Dr. Im sure its nothing hang in there. Hope your appointment isn't too far away.
farmerma- can you believe it time goes by so fast. Heres to a speedy recovery, Cheers!
Simplicity- you have a fantastic attitude, and Im sure that is whats getting you through, besides the colouring lol. Just know Im always thinking about your recovery and looking forward to seeing the beautifuly healed pictures.
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Hello farmerma, you seemed to have the same diagnosis as I with er+pr+her2-, except I'm staged 2b. Congratulations for your successful surgery. I'm doing neoadjuvant chemo AC+ Taxol (12wks). I'm only 3rd week with Taxol but I'm contemplating on whether to do lumpectomy or unilateral mastectomy. Most of what I read lean toward MX because of better cosmetic outcome and insurance coverage. However, I have a question about your decision to do a unilateral MX after you have the lumpectomy in 2014. Was your lumpectomy successful and radiation successful? That's what my OC wants me to have because she said breast preservation. I just want to know from someone who has been to both sides of the fence. If you don't mind sharing, thank you so much.
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- Hello farmerma, you seemed to have the same diagnosis as I with er+pr+her2-, except I'm staged 2b. Congratulations for your successful surgery. I'm doing neoadjuvant chemo AC+ Taxol (12wks). I'm only 3rd week with Taxol but I'm contemplating on whether to do lumpectomy or unilateral mastectomy. Most of what I read lean toward MX because of better cosmetic outcome and insurance coverage. However, I have a question about your decision to do a unilateral MX after you have the lumpectomy in 2014. Was your lumpectomy successful and radiation successful? That's what my OC wants me to have because she said breast preservation. I just want to know from someone who has been to both sides of the fence. If you don't mind sharing, thank you so much.
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Hello farmerma, how long ago was your radiation before you have to wait for the MX and reconstruction. The surgery seemed to be very long but it may all be worthwhile. Glad you're done with everything. Thanks for sharing.
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Donnar25
When I had my mastectomy they took First set (sentinel) I had one node involvement size 0.7 cm, they did biopsy while I was in surgery. They took second set of nodes (axillary) and I had one less than 1mm in size so they took third set and those nodes were clear. so I was considered 2/14. 90 days after surgery I had 33 radiation treatments of my whole right breast and all lymph nodes, 7 fields. My understanding is the radiation of the breast and nodes were to make sure to get any C-cells that would have been left behind after my surgery. They also radiated my drain sites. Radiation was a process but now that I am past it I would never have said no to having that done. I want to know that I have done all I can to beat the beast!!
I am having Diep Flap surgery in 26 days...who is counting. Found this forum a couple of days ago and it has been the best information other than my PS that I have found in 6 months. Its unfortunately the sisterhood of what we are all going through.
God Bless.
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Christianna- Welcome to the forum. Your 26 days will be here before you know it. If you are anything like the rest of us in the forum you will be so happy with your results of your deip. My nodes were 1/15 and I also had 41 treatments of radiation, along with chemo. Radiation really sucked, my skin was raw. Even now you can see where my radiated skin is so thin and wrinkly compared to the surrounding skin. But like you I would do it again. I need to know I have done everything. Its the hormonal therapy that I really hate. Seems like every one I have tried I have had some issues with. Now Im on anastrozole and its my last one to try. Trying to stay on it as long as possible (only three more years to go YIKES). Keep us posted on your progress. This is a great place to get information, and ask questions. Hugs
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Hello everyone, I haven't been posting much lately because of internet connection where I am and also have caught a sore throat and a cold, so trying to rest as much as possible. It's been ten weeks for me post stage 1 DIEP and I'm still changing dressings on my abdominal scar but it is improving. Hoping to start swimming in a week or two or three. By the way, have any of you had to deal with hard lumps in the reconstructed breasts? Do the lumps go away by themselves eventually, do you massage them or does the PS do something during stage two and if so, what?
I checked the silicone strips online and they are expensive but there is also cheaper gel. have any of you tried the gel? And how long do you use them/it for to get results?
Sorry to hear about your holes, Simplicity but glad to hear you didn't have an infection the second time. Those photos certainly look like an improvement from when you first posted. I hope your nurse doesn't have to dig inside them anymore when you have your dressing changed.
Wishing you all a wonderful summer.
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Hello everyone. Just and update on my boob hole. saw surgeon today......two options were given. continue packing it daily which will take approximately another 3 months to close or have another surgery to clean it all up and get rid of all the bad. unfortunately that means i will have another dreaded drain but hopefully not for long.
they will even out my right boob as well. so i think that means my original DDs pre DIEP will now be a B cup, maybe?? lol
i am so exhausted from the daily dressing changes (still not back to work, was supposed to go back july 25) that i do not want to do this daily packing for another 3 months.
so, waiting for another surgery date and hoping this will heal all the problems. fingers crossed this hole will be history within 2 weeks.
tanya
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Hi Christianna- thank you for the info, and sorry you have to find us here:(
I saw another radiologist today for a 2nd opinion since the 1st radiologist didn't even sound like she had read my file. He said since I had one micromet in just one lymph node, that actually puts me in the 0 node category for expected survival statistics. And he said there's almost a flip of the coin as to whether or not radiation is needed. Since I've already had a complete round of 6 TCHP chemo treatments, and a BMX with immediate recon, he said he wasn't so sure he'd suggest doing the full breast or chest wall since my tumor wasn't near the chest wall, and that was my main concern. But I told him I thought I for sure wanted the lymph nodes radiated, and he said that's what he'd lean towards as well... Or no radiation at all. But I don't think I'm comfortable with none. I, like you, want to know I did all I could to kill this beast! ☺️
I'm glad to hear you're getting a lot of info from this site. And keep us updated as your surgery nears! 26 days will fly by!
I'm very thankful I found this site early on for sure. And I've definitely learned to ask for 2nd opinions when I feel like I'm being told something way off base from what I've read on here! It saved me from a BMX from a gen. Surgeon when 1st diagnosed as he was telling me no chemo before BMX and wouldn't even refer me to an oncologist before doing the BMX. He was so wrong and could have killed me with my aggressive grade 3, HER2+ status. So thankful for this site.
Simplicity- I'm sorry for all the issues you've had healing, and I've been keeping a close eye on my incisions and taking notes so I hopefully notice any issues early on. Your attitude has been so inspiring to me!
Praying for everyone's healing! God bless🤗
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