DIEP 2015

websister

indiaskye - every PS is different re: bras and binders after surgery and there can be good reasons why. I also was told no bras for six weeks post op - no compression on underarm area where the blood vessels had been attached to allow for best circulation to flap - I ended up with extreme muscle sparing TRAM due to tiny vessels. Compared to mastectomy it was easier for me as I did not have the same pain from axillary lymph node dissection. I was able to do simple tasks once home but I did not look after others - good that you have help. I also did loose t's and maxi dresses, sweatpants, elastic waist shorts - I found higher waited worked best for me as my incision was lowere - you are able to raise arms to shoulder height and bend elbows from there. Wishing you all the best

indyaskye

Thank you for the clothing advice. I was wondering about the stomach incision and what would be best to wear. I kept walking into stores, but never bought anything. I'm glad I have some ideas of what to buy now. I guess my husband will be shopping for some new underwear for me tomorrow... I I was hoping to have better arm movement after this surgery since I will not have lymph nodes removed. I'll keep my fingers crossed that I can get into some baggy t-shirts. I also have some trapeze style tanks that I can step into if needed. Before the bmx I did a lot of stretching with my arms/back hoping that would help. I think it did as I had pretty good range of motion. This time I have been stretching and doing planks to try and strengthen my core before surgery. Thank you for the advice, hopefully I'll be back on here soon. It's a journey, that's for sure.

slv58

I ended up getting Bali microfibre high waist panties and they are super comfortable, the waistband is soft and wide and sits above incision. They aren't very sexy, but I find my normal panties lie right on my scar or just below and I find it very irritating 5 months post surgery. 

I also lived in a pair of high waist yoga pants. 

Best of luck with surgery and a quick recovery!

mary625

Can anyone make recommendations for plastic surgeons in High Point or Winston Salem, NC? This is for a friend. I've already recommended Dr. Massey since I think she's in Durham now at times, but I don't know if she'll do a Stage I except in NOLA. Friend had BC 15 years ago, with chemo and lumpectomy. Just found out she is BRCA positive after all these years and is going to have prophylactic BMX and recon. Thanks.

Westphal107

I am scheduled for bilateral DIEP on Sept 15th and am looking for input from others who have had the same surgery. The length of the surgery (estimated to be 10+ hrs) is what scares me the most. Being "out" for that long scares me even more than the fact that I am losing both breasts. What have others done to prepare themselves mentally for such a long day? What advice do you have? Are you happy with your results? What would you do differently? Thank you

LAstar

Westphal107, you won't be aware of the time you are out. It takes longer to shake off the anesthesia after a long surgery (my BMX/SGAP was 11 hours). I was given a incentive spirometer which was greatly helpful to get the anesthesia out with long deep exhales. Apparently the anesthesia can get trapped in the little folds in the lungs and make breathing harder if you don't get it out. I parked it somewhere comfy with a huge glass of water, the spirometer, and a movie or magazine and let the water in and the breath out. I was terrified about the anesthesia before my surgeries because I'd never had surgery before. I get so anxious with waiting for the surgery that I ended up being so happy to see the anesthesiologist! Let's do this! They are very good at what they do and they make this process so easy. They can also give you something soothing while you wait. The day is very long for your loved ones. Encourage them to get out and go for walks and stay occupied.

I am happy with my results (really they are amazing and I love going braless for the first time in ages), and I'm glad to feel strong and normal again. My advice is to not push yourself too much after surgery or let yourself be in pain. I used pain meds as long as I needed, and I think it helped my recovery because I was able to move around more. I was up taking short walks outside 5 days after surgery (followed by a loooong nap). Getting up and about helps a lot. It's hard to get up, but once you are up, stay up as long as you can.

The recovery is long but it's not all bad. I called old friends, read cheesy novels, relaxed with my daughter, watched dumb movies, and took plenty of naps. My friends brought meals and short visits were nice. Be warned that many of us hit "the blues" at around 3-4 weeks because we are so sick of the long recovery. Progress is better measured in weeks than days for the first few weeks. Then you will turn a corner and start feeling more normal every day. And life gets pretty sweet when this is behind you! Best wishes!

Westphal107

Thank you so much for your reply. I'm gearing up for my recovery period with loads of books and seasons worth of Netflix favorites. Your advice about the spirometer is very interesting. I am going to check into it. It's also nice to have the heads up regarding the potential "blues". I'm going to work really hard to get up and moving as quickly as possible after surgery so I can spend time outside on the patio to soak up some vitamin D. Your response has made me feel less anxious. Thank you and best wishes to you as well.

CarolynAnne

thanks LAstar, TallyLassie and Dismay15 for your suggestions!

Went for 10-day follow up with PS- drains came out! Woohoo!

Still have to wear the binder for 2 weeks. I think I am going to cut it down. It is better now that I don't have it rubbing against the drain tube in my breast. I do have skin irritation from it though. Me and my sensitive skin! I got blisters between my breast from the plastic surgical tape!

New question: did any one else's PS use abdominal mesh? This wasn't mentioned prior to surgery and was told post that he used it. I'm not in love with the idea because I hate foreign objects in my body- just hope the infection risk is slim

Indyskye- i am still trying to figure out what to wear. I mostly wear a button front silky robe thing that is comfortable. Couldnt wear underwear with drains because they were low on my hips. Now I can. No bra. PS doesnt want any constriction while breast is healing- this is different from implants because of the crucial artery and blood vessel connections done in FLAP reconsteuction. I assume I will be comfortable wearing a light sports bra maybe in a week or so, but until I have to, i am not wearing anything.

I have worn a big mens cotton tee too (neck cut off) but when the drains are still in - the least clothes the better. I just clipped them to binder and when showering, clipped them on a band around my neck that the hospital gave me

It is difficult for all of us women to let others do things for us but it is necessary.

My mom is running herself ragged and I tell her that she doesn't need to do all she is but she can't help herself. It makes her happy so I am letting her. She babies me so! Way more than my H.

Hugs and healing to all!

CarolynAnne

LAStar- is the spirometer the thing that they give you that looks like a breathalizer test? You suck in and breath it out? They said 10 breaths every hour to help clear the lungs? i guess it worked! Everytime they came in to do the doppler check on my breast ( 1/hour for 48 hours post surgery) I did my ten breaths then fell right back to sleep until next hour. That first day in the hospital was a blur.just could not stay awake.

CarolynAnne

Westphal107- i am 11 days post uni-mx. DIEP flap, SLNB

i brought all sorts of stuff to do in hospital (4 nights) and all I did was briefly check my phone and send a text here and there. Couldn't watch tv or anything until day 3? I was just super groggy.

I react quickly to anesthesia. I was in preop, they put my iv in, surgeons checked in, etc, Then my IV started to form a lump in my skin so they said they were going to check it and give me something that would make me feel a little loopy and if I started to feel that way then they would know the vein was good. Well they injected it and the next thing I knew I was waking up from the 7 1/2 surgery!! My H said I was talking and I was still awake when they wheeled me up to surgery but I don't remember any of it!

Getting up to sit in a chair the day after surgery isn't fun but it is nice to sit up. And the best is getting a shower day 3(if your PS allows)! I felt like I was getting pretty stinky and that was gross.

Oh- make sure they start you on Colace or something for constipation cause it will happen! Try to drink a lot once your PS says you can have clear liquids ( you'll have the catheter in for a couple of days so drink away!) that will help flush all the crap out of you. I didn't have any nausea and I hope you don't. I was eating light foods by end of day 2.

Good luck to you! It is a great hurdle to get over! One more step to recovery

Carol99

Hello, I am new to this group. I had a BMX with direct implants in November of 2013. After multiple revisions I am going the DIEP route. It was suppose to happen in Nov. but I had to reschedule to Jan. 5, so technically 2016. I'm very nervous, after reading the last few pages though it seems like most are happy with the results? I hate the feeling of the implants and the look of my muscle contracting over them. I can also feel them underneath my skin.

Is the feeling in your abdomen similar to C-section? I've had a couple of those.

Cseagirl, my mx was Dr. Goshen, my surgeons doing the DIEP are Dr. Halverson and Dr. Pomohac, he did my first recon.! I'm at Brigham also.

thank you, keep the info coming!

LAstar

CarolynAnne -- yes, that sounds like the spirometer! It's not fun at first, especially after Stage 1 if any of the sternum/rib area has been removed to access vessels, but it really helps with recovery. Glad to hear that your drains are out and you are being so lovingly cared for!

Bunnybumps

I'll be 6 weeks out on Monday and the pain in my brachial nerve seems to be getting worse and traveling farther down my arm. Am I correct in assuming that since I had the axillary nodes removed from the left side and I am left-handed that I am probably doing a bit too much (in spite of the home exercises)? I am afraid of doing too little, as I don't want frozen shoulder, but I think I might be irritating the nerve. I have a f/up with my pain management dr in September. I figure if it's not better by then and/or I'm not improving ROM, I'll ask for PT again.

CarolynAnne

Thanks LAstar! Yes it was hard to suck in that first day on the spirometer! Then it got easier.

13 days out from surgery. My ab area is sore! I've reduced my vicodin but still feel like I need it. Maybe I am moving around too much? I just hate not doing anything!

OMG sat and watched all 3 Lord of the Rings movies yesterday (off and on) with my mom just because they were on. We are such nerds.

Can't wait to sleep in my bed again and ON MY SIDE! Back sleeping is rough for me!

Oh and discovered that my underarm hair is growing back after chemo with a vengeance! I hadn't looked under there and wow! That was a shocker! Lol

Wish the hair on my head would grow as fast!

Healing and health to all!

Trvler

Carolyn: I see your treatment is very similar to mine. Neoadjuvant chemo and DIEP. Did you get your path results? Did the chemo work? I think I am technically stage 3a because I had at least one positive node and one suspicious one. Did you get a recliner?

fotogirl

Hey y'all! I have been lurking on the boards since my diagnosis in August 2012, but have never posted. I am having bi-lateral DIEP flap reconstruction on Monday 9/8 with Dr. Scott Hollenbeck at Duke University (if anyone has had him, let me know!). I had bmx with TE placement in 12/2012, and exchange surgery 5/2013. I have had a host of issues with upper body functionality and pain, and that's why I am having this surgery. My original surgeon said I wasn't a candidate--which was total BS according to my new guy.

Anyway, my pressing question at the moment is what kind of help do I really need after I get home? I am divorced, my teenage boys are away at school and my ex and I share 50/50 custody of our 11yo daughter. I have plenty of family but not many friends, and everyone works and is busy with their own lives. Do I need someone here all the time the first few days or can I get by with regular check-ins? Should I hire a nurse or caregiver for a few days?

Any other advice regarding this issue would be most welcome. I went through the other 2 surgeries mostly alone and that could be partly why I developed some of my problems because I was not able to rest much with 3 kids and 3 dogs at home back then.

Thank you guys so much!

E

Js5

Did anyone get numb lip or loss of taste after surgery? I am 5 days post surgery which was 16 hours long! Bilateral mx and DIEP reconstruction on one side and another flap type on other side cause vessels were not strong enough for DIEP on that side. I know I was under anesthesia for a long time and that is what caused blister and numb lip from intubation tube I think. It is so hard to want to eat when you can't taste anything. And tubes are causing itchy rash under my arms. At least my period which was due around surgery date, waited until I got home yesterday! Trying to stay positive

lynn85

Law828, sorry for the late response but I had a planned diep (ended up free tram) at MD Anderson in June. I would be happy to answer any questions you have! I was also from out of town but was able to stay with friends instead of a hotel.

Morwenna

Hi fotogirl, and welcome!

Do you know how long your hospital stay will be? I stayed in 5 days, and my dh stayed home with me for about the first week I was home. It was nice to have him there even though he didn't have to do a lot of actual hands on!

People have somewhat different experiences, as you will see if you can be bothered to trawl through this whole thread!

I had trouble standing more than a minute or two for most of that time. About day 3 I got hungry and fixed my own sandwich and a cold drink. BIG effort. For me, back pain was major, and also very short of breath .... although that was probably due to lung clots, looking back!

If you can have somebody stay, or at least a nurse visit, I think you would appreciate it! Having said that, I'm sure somebody on here will pipe up to say they were fine on their own!

LAstar

fotogirl, I also think it would be good to have someone check in on you for the first week until you shake off the anesthesia and can get up a little easier. If your 11-year old is fairly independent, she could be a lot of help with just getting things for you. My daughter and I spent a lot of time snuggled up with books or movies, so maybe she will enjoy just having you close by. My daughter was younger but felt really empowered that she could be so helpful to me. The snuggle time also seemed to put her mind at ease after seeing me in the hospital. There will be a lot of ways you can prepare before surgery, like freezing food portions for yourself and making sure nothing is too heavy to lift (like putting drinks in smaller containers, moving dishes to counter level, cleaning the bathroom and preparing a space for bandaging, preparing a space for sleeping with lots of pillows for a little nest). A nurse that can help with initial showering and bandaging at first might be really helpful. Best wishes to you!

fotogirl

Thank you guys for your replies!. I will be in the hospital at Duke for 4-5 days, and I live in Greensboro, and hour west of Durham where I'll have surgery. That's why it's not easy for anyone in the family to stay or be with me much in the hospital. Once I get home, my daughter has school and dance so she is generally gone from 7:30a-7:30p with the exception of the hour btw school and dance when she changes clothes and gets a snack. We had a death in the family last week, and so my stepmother won't be able to be around much because of all the catching up she'll have to do at work (she runs her own business in the furniture industry, and it's pre-market...a very busy time for her.)

I have started re-arranging the house. This time, I bought a recliner so I don't have to go up and down the stairs just to get a drin, and can be in the proper position more easily. It was a struggle after my other surgeries in the bed. I am bit nervous about being alone a lot. I got quite depressed after a couple of the last surgeries. But I was also still going through my divorce, and that's over now, at least!

Morwenna

Sounds like you will have yourself organised. I think a recliner is good (powered: I couldn't manage my manual recliners to start with!), and you can sleep or rest there as much as you need.

I ended up with an uncomfortable backside, I was sitting on it so much: I longed to be able to lie flat in bed, but I had to be careful not to get stuck like s turtle for the first while!

Think about easily prepared food: it took a while for me to be able to reach our microwave, which is about eye level to me!

If I had been on my own I should have considered putting it down on the counter top ...

mefromcc

Hi everyone. Had my first fat grafting today. Sailed through it (actually should say slept through it 😵). He took fat from my thighs and upper abdomen. I have intact nerves there, so I am having serious pain, so that means pain meds. Strange, since I the original BMX severed enough nerves I didn't have pain in that area the past four surgeries. The pain medication is controlling the pain, so I am OK. Just surprised me because the past year gave me a new normal. BC, the gift that just keeps giving in surprising ways.

Morwenna

Glad you are doing OK me. Rest up and recover!

dismay15

I am hoping for help from anyone who has experienced burning and hypersensitivity of the skin across their entire chest area. I am 4 weeks out from bmx and diep and I think this stared about a week ago. I have looked for responses from Diep 2014/2015 and I gather this is just my nerves taking time to settle down. It gets worse later in the day because of activity I think. I take a pain pill and it lessens. Has anyone experienced this and does anyone have any advice? By the way, I also get a cold sensation in my chest when I drink cold liquids. I have read it referred to as the "waterfall" effect. Hoping it is temporary!!

mefromcc

Ask your doctor if you are a candidate for gabapentin. It is used with diabetic neuropathy and acts directly on nerves, so it doesn't "snow" me. Took the creepy sensation completely away.

Somewhere along the journey my cold esophagus went away.

phoebe58

Good morning ladies. I am back home:) So are my gorgeous new girls!! Yipee. Surgery was Aug. 20 in Vancouver 11 hours --I had bilateral mastectomy and diep for lobular cancer on right side with 3 sentinel nodes taken and prophylactic on left. It all has seemed to go so well overall and I have felt well too. I did a thorough colon emptying prior and did my abdominal and leg strengthening which sure helped.

I was 5 days in the hospital with great attentive nursing care and lovely visits from friends -- I apparently rebounded impressively well from the anaesthesia, the 30' hot room first two days not fun but tolerable, and was on a mix of morphine and oxy. Looking down at my new fleshy mounds was so reassuring. Day 3 I puked a bit -- panicking more about what it may do to abdominal incision ...but it was fine, so they said likely pain med combined with no food. Swapped to dilaudid which i tolerated better and then was up for the geriatric shuffle to the biffy. Oh my -- that first time, I felt like a turtle on my back trying to get out of bed, then had an extreme hunch and mini shuffle. Every day after that got better in leaps and bounds til I was scuttling around the ward --not quite creating a breeze but more upright, steady and bigger strides.... the physic 'fired me' as I was too strong and didn't need her any more! Sore sternum area made the deep breathing tough but I did it after pain meds. Breast drains removed on day 4. I finally saw everything in a mirror too on day 4--lifted my gown... thanks for the heads up re the Ken mound -- I was able to laugh instead of freak! Abdomen puffy by then [day one when I looked down my tummy looked like you could bounce a quarter off it! But the girls -- omg. Dr Sheina Macadam is so gifted. So little suturing, the right breast [the problem child] missing nipple and some belly skin in place, but still lovely, and the left [nipple sparing] looked like a centrefold. My emotion was like that Ikea commercial -- 'start the car, start the car!!' as I felt I really ended up with something too good to be true. I have gone from a nice enough former B to a C-D and will likely end up a C when all swelling goes.

Then I went to stay with a friend until 2 weeks post surgery when I could fly home. Renting that power recliner was The Best Thing I did. So helpful...... well until the huge windstorm and power outage.....luckily not the first few days... it couldn't recline for 1 1/2 days [oh the irony] but had ottoman out front. Needed to mountain goat up 6 flights to her top floor condo as elevator out, but took it very slow. Slowly walked more distance and was up more, but she took great care of me and did all healthy meals and laundry, as I could only reach for juice, water, or do toast. I had follow up appointments during that time: community nurse changed dressings and commented how amazingly well I looked for 1 week out. Got path results -- initially frustrating to both my and my surgical oncologist as a resident did them -- vague and incomplete. She took 3 nodes. Only a report on the first one [a few micro bits] -- important to know about 2 and 3.....so she called back and got more info - nodes 2 and 3 clear. Also, it turned out my so-called 'good' left breast was riddled with small foci of lobular in situ [yipes -- sooo glad I had both taken -- no idea something already was developing]. And nipple on good side had something in the central duct, so sadly I will lose that -- need to go back to Vancouver briefly next Friday to have that day surgery procedure. They wil be a matched set at the end of it all, so more of a nuisance to have to fly out again in a week.

Now home, so happy to be in own bed [even though I flounder a bit to get out] and see cat dog. Friends will be dropping by to check and help with stuff, and got weekly house keeper as I live alone. My tip - get a little rubbermaid type plastic stool -- useful in front of microwave etc. Still on Emtec [like a T3 with no caffeine] for pain but way less, and mix in tylenol extra strength.

Glad you found classical stretch site helpful magic light, and hope your surgery Tulip [same day as mine] went well.

Cheers all, and all the best with your healing and upcoming procedures.

Law828

Thank you all so very much for sharing your experience and even to those that asks the questions that I should be asking too. You all are amazing and so helpful. Again, Thank You

Morwenna

Well done phoebe .... onward and upward!!!

dismay15

Thanks mefromcc I have a call into my ps. I am also grateful law828 - without the help and experiences I read about and find here I would be lost!