DIEP Flap Reconstruction 2016
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Hi there, I am brand new to this community, and I just had a DIEP flap reconstruction in Baltimore, MD at Mercy Medical Center on January 12th. I am only about 2 weeks out from my surgery so still managing the pain and stuck at home doing the recommended exercises. I am glad that it is behind me and I am on my way to recovery. These are the things I wish I would have known. I came home from the hospital with one camisole with pouches that hold the drains - i wish I had gotten a second. The first one needed to be cleaned about every day, and while that was happening and hanging to dry, I had the drains pinned inside my clothing. I was definitely more comfortable in the camisole and wish I had two. But I only really needed it until the drains came out. Which happened about 10 days later. At this point, my doctors recommended wearing tank tops with the built in shelf bras. I have two that are ill fitting, and wish I would have known ahead of time - I would have stocked up on those before my surgery. Also, zipper sweatshirts and big button down shirts are a necessity and comfy sweat pants. I have limited clothing that is working for me right now, and would have probably bought a few more items before the surgery had I realized what I was going to be wearing now. I was comfortable sleeping in a lazy boy type recliner the first few days at home. I also have an adjustable bed, so I have since been able to sleep in my bed with the head and feet raised to a comfortable level. It's not so comfortable for my husband, but we have a kid away at college, so there's another bed he can sleep in if it bothers him. I did not need a walker, or chair lift or anything like that. Button down PJs are good, or I also used a "duster" type zipper front long night gown for a few days that I thought was perfect under the circumstances even though it isn't something I would normally have chosen for myself. In the hospital, I didn't ever get out of the hospital gowns, so I didn't need a robe, but I was glad to take my toothbrush and toothpaste and wish I had taken a travel size shampoo/conditioner. I also took magazines, books, my cell phone, and an adult coloring book and markers, which I did use all of these things while there. When I was ready to shower, I could only get baby bodywash from the hospital. I didn't need a shower chair. I did find I had alot of hair coming out the first few showers after my surgery. This may be the result of the anestesia or other medications? Not sure. When I got home, a few days later, one of my drains came most of the way out and I was panicking about it. I called the doctor's office and was told this is a quite frequent occurrence, and the physician's assistant instructed me that I could remove this drain myself, which I did with little issue. I also came home with an On-Q pain ball attached to my abdomen, which helped numb my stomach for several days. It was in a bag which I could hang around my neck, and then pin the drains to it while I showered, so I did not need a lanyard. The pain ball was empty and the PA helped instruct me over the phone how to remove it. I then took another shower and realized I had nothing to pin the drains to! I used a tie for a robe, which I tied around my waist and that worked fine, but guess a lanyard may have been a good idea too. I haven't experienced any infections to date, and everything is healing so far. All the medical professionals who have looked at my incisions site keep saying how great everything looks. Of course it doesn't feel this way to me as I think I look like I was cut in half and glued back together, and it will be awhile, and several additional procedures, before I achieve breast symmetry. Overall, things are going probably about as well as I could hope under the circumstances. Best of luck on your up coming procedure. If you want to chat more with someone who has just been there, please feel free to reach out to me.
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Hi, thank you so much for replying and your information is wonderful. You sound like you were up quite a bit in the hospital reading magazines and coloring. Most posts I have read, many slept most of the time. You must not have had a lot of discomfort in the hospital? Was the pain manageable after surgery? That is what I am worried about the most, is the pain. I have low pain tolerance, so I'm freaking out a bit about that. And I'm surprised they you were able to shower, because my doctor told me I couldn't shower til the drains came out. Which would be approximately about 10-14 days after surgery. So I will have to ask about that.
Again thank you for your reply and I truly hope your recovery goes quickly and smoothly!
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Wings, I replied to a msg of yours on another thread. I wanted to add....you will find that all these surgeons are different on what they say you can, can't, have to, shouldn't do. Definately listen to your own doctor and if you see something on here, you could ask your team. My p.s. said I could shower when I felt up to it. He also gave me no physical limitations after surgery. He believes your body will let you know when it's ready to do something. Other doctors believe differently and have their reasons, so definately follow the advice of your own team.
Also, I think your alertness in the hospital will depend on how much pain med you need for comfort. Again, everyone is different.
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Cwcousler-
Welcome to BCO, and thank you so much for chiming in with this wonderful and thorough response! It's so helpful to hear firsthand from other women who've been through this!
The Mods
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BigSister & Trvler: Thank you for your response.
I'm scheduled for LD & Implant on left breast on March 2nd. My PS would only do 1 breast at a time. For my right breast, I would like to have DIEP but my PS is saying I don't have enough fat on my abdomen. I'm 5'3'' and 125 pounds. She prefers that I also have LD on my right breast. I'm pushing for DIEP (with implant if necessary) for my right breast, but my PS doesn't want to discuss this until she's done with my left breast. I'm not 100% comfortable with her.
I've contact PRMA in San Antonia and they don't take my insurance. I'm very interested in NOLA but I doubt they'll take my insurance. I live in Southern California in Orange County and just got approved for 2nd opinion with Dr. Anthony Da Lio at UCLA, so I'm really excited. I'll keep you posted.
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CWcousler.....it's good to hear from you and to hear how well things are going for you. it's so nice to hear what to expect when we go to the hospital, I understand every one is different but basically all the same.You gave good pointers regarding what to have ready when we get home. did you have BMX and diep? I'm starting to get a little nervous every, but reading encouraging stories like yours makes it a lot easier. thank you.....happy thoughts and keep up posted on your progress....
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Love: What's your insurance? PLEASE at least contact NOLA. If they can work with you, they will.
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lovejoypeace,
If you end up wanting to talk with another PS at UCLA, I can highly recommend Dr. Christopher Crisera for Diep Flap.
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I was in pain but was well medicated in the hospital. I had a button to push that I could use every 6 minutes as needed for additional medication to help alleviate the pain. I did sleep alot. I had a few visitors but alot of quiet time to myself and did manage to read magazines and watch some TV and color a picture or two. That helped me keep my mind occupied so I wasn't focusing on the pain. And yes, I was able to shower before I left the hospital and any time I wanted after I got home, even with the drains. I used a fragrance free baby wash to shower, and I got a microbial spray at the hospital that I could use on my incisions when I was not able to shower. Several friends also gave me facial cleansing wipes and dry shampoo spray. I didn't end up needing this, but these would be good options if your doctor really doesn't want you to shower. Best of luck to you!
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CoolgrammieNC, I did not have BMX, just the right side, DIEP flap reconstruction. I have consulted with two other women who both had DIEP flap after BMX, and both of them told me they are 100% happy with their results now that they are fully recovered. Both had a longer road than me in their cancer battles and did their reconstructions later, after they had been through their mastectomy surgeries, chemo and radiation. One of them told me in hindsight, she wished she had waited longer to let everything heal from the mastectomies before moving forward with the reconstruction. After chemo and radiation, her immune system was down, and she had issues with infections. I was blessed in that I was able to avoid the chemo and radiation since the cancer had not spread to my lymph nodes and I was glad I could have the mastectomy and reconstruction in the same day. I am now 2 weeks post surgery and feeling pretty good. I'm completely off the prescription pain meds and relying on ibuprofen and acetaminophen. Doing my post-op exercises daily and taking it easy. Sending you hugs and good vibes for smooth surgeries and recovery!
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Surgery went well! Let me know if you guys wanna see pictures
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awesome! So happy for you
wishing you a very speedy recovery!0 -
abdominal ct scan day. one day closer!!!
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myajames, I'm so happy for you! Keep us posted as the days go by with how you're doing. (And heck yeah, we want pics! LOL)
I got the call today: surgery on March 18, pre-surgical testing March 8.
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Day 3: meds please
Definitely not as intense as I thought it would be. Definitely more sore today without the pain pump.
Here was a pic of one of my boobs day 1.
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Great to hear from you MyaJames! Congratulations on being done with the surgery. It looks like they did a good job! I watched a youtube video of the surgery (or rather the highlights) yesterday. Not bad...actually very interesting!
I hope you get those pain meds ASAP!
Congrats Tanyarocks!
I have a CT scan tomorrow as well. I had my original CT scan for DIEP early last summer. Two lung nodules were found, which really aren't of any concern, but they monitor them. SO, tomorrow is scan #3.
Next Monday I meet with my PS for pre-op, then I see my MO. I have a few concerns-some headaches and other things. I want a brain MRI. I was Triple Negative and I have concerns about mets. I also am going to ask about a trial for us TNBC gals who had residual disease after chemo.
I am so ready for these expanders to come out. I have pains from side to side and up to my shoulders from the damn things.
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Myajames....your boobs look beautiful.....wishing you a speedy recovery...and yes, pain meds please....
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Myajames: I wish you a speedy recovery. Looks great!
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Myajames, you are looking wonderful!
jlstacey, please come update us as soon as you get the results from your scan. We're all with you in spirit.
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Hello! I had Double Mastectomy and Diep surgery on January 15,so you are not alone! I stayed in the hospital 3 days,it was extremely painful to me,my abdomen gave me the worst pain than my breasts. I've had 3 C sections and it doesn't even compare. I came home with 6 drains,saw the plastic surgeon on Monday and she removed 2 drains,they are so annoying to lug around,I too,don't have that many things to wear that button or zip up either,so I just make due! Just want you to know you aren't alone,we can all share helpful tips and tricks to each other and uplift one another as well..Good Luck to you 😊
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I haven't posted on a while but have been recovering nicely from stage 2 in NOLA, and am scheduled for tattoos (Vinnie) in March. I needed a break from thinking about BC an reconstruction. Had to post now in response to PeaceLove.
Dear Peace, please carefully research LD and lasting pain it causes. There are threads here on this site. I got LD a year ago and really regret it - pain wise and appearance wise. This seems to be the case for many who get LD. Also after so many complications I didn't want to ever have to worry about implants ever again. NOLA was able to help me. I'm 5'6" and weigh 123. They were able to give me full B cups with DIEP. No complications.Please make sure you aren't getting LD for the reason that it's all your PS knows how to do.
Love to all of you sweet ladies. I may not post much but I do pray for all of your health and happiness.
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Day 4: Shower me please! And let's go home. Being discharged today! Yay
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WOWWWWWWWWWWWWWWWWWWWWWWWW
that is awesome. keep up the amazing recovery!!!!!
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Myajames
What great news....speedy recovery....don't overdue it....so very happy that you are going home....
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Dear LoveJoyPeace, I realized I mixed up your beautiful name. Got to be chemo/anesthesia brain and I hope the smart one grows back! So glad you are looking at all options - no going back from moving that LD muscle.
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Hi ladies,
Just wanted to continue to share my DIEP flap reconstruction journey with everyone. I'm now two weeks and 3 days post-op. I'm feeling a little better everyday. At this point, I am able to get a normal oversized sports bra on without too much discomfort. I'm wearing granny panties and have found it most comfortable to have a layer of fabric between my skin and the binder that I am wearing. Camisole tank tops and v-neck t shirts are easy for me to get on at this point and are providing some additional comfort. I came home with a set of exercises to complete 3 times per day, and I have been doing the exercises religiously. I attribute my increasing flexibility to following that program. I still feel a pinch when doing certain movements, at the spot of the incisions where the drains were under my arm, and in my right abdomen. After I complete the exercises, I feel a bit sore or tight for about an hour after. This is normal from what I understand. From an emotional stand point, I've been up and down. I have been prone to some tears each time I see someone who I haven't seen since before my surgery and I can't really explain why. I have a home nurse who stops by twice a week, and that gives me some reassurance that everything is healing and so far, nothing to be concerned about. I have mixed emotions when I look at myself in a mirror. On the one hand, my stomach has never been this flat and my reconstructed breast is perky, albeit nipple free. On the other hand, my left breast looks so droopy by comparison, which I never was self conscious about before. Also, the ugly scar from one hip to the other looks surreal to me, like I'm not looking at myself, but a sewn together doll or something. Also, my thighs and butt are still soft and jiggly and don't match with my now tight abdomen. I feel like I'm a work in progress. Before breast cancer, I never would have sought out this as an elective surgery (boob job/tummy tuck). And I never would have considered getting a tattoo. Now in one year, I will likely have done all three. I know I need to heal before I can proceed with the next steps in achieving symmetry, but I can't wait for the day that I can look at myself in a mirror again and see a more normal body and matching breasts! Sounds like it's going to be about a year before that is a reality. I have found many things to appreciate as a result of my diagnosis. I am so blessed with great friends and family who have been tremendously supportive during this time. My sister set up an account on takethemameal.com for us, and people have been dropping off dinners three times a week. My mother is an absolute saint. She has helped take care of me and my 4 year old son. I've received flowers, cards, and a prayer shawl made by my friend's church group whom I've never even met, which is so special to me as I definitely believe in the power of prayer! So one thing you find out when you get a diagnosis like this is who can you really count on in this life, and my circle is big and strong. It also forced me to slow down and take a step back from work. I had been working way too many hours leading up to this and had been praying for a break, it's funny how something so awful can also be exactly the thing you need to resolve another issue in your life, and also to give you the strength to set better boundaries for yourself. Also, I now have time to exercise, and instead of it being the thing that I put off and never get to, it is the one main priority in my life at this moment. My goal is to continue to make it a priority once I'm healed. As a working mom who always puts everyone else's needs ahead of my own, I was literally forced to make myself the priority for a change, and that has also been a gift as well. Thanks to those of you have been sharing your stories as well. It is comforting to share this with others who can appreciate what we are going through as those closest to us often cannot comprehend. Hugs to those with upcoming surgeries and quick healing to those who have already been through it!
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CWcousler...thank you for a much needed pick me up....your story as well as everyone else's has been giving me the courage and resolve to accept what we can't change..I'm so happy to hear how fast you are already starting to get around....take it easy...keep up the amazing recovery....happy thoughts and🙏🏼Prayers.....
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CW: I wish you the best in your recovery.
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CW: Thank you so much for your update.. So very happy to hear that you are receiving such caring support. May your recovery continue smoothly and quickly!
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Some last minute questions... First the issue that's made me more angry than anything else throughout this process: They still haven't read my MRI yet (done to make sure nothing suspicious in my left breast before prophylactic mastectomy...). My understanding was if there is something there, I'll have to get sentinel nodes done on that side too (dye injections planned for MONDAY afternoon). But the nurse navigator told me yesterday that if there is something there they would want to biopsy it and it would delay my surgery!! Is there really a chance of that?? I have family flying in tomorrow and my work has bent over backwards to make it possible for me to be off for a month. I'm really hoping she doesn't know what she's talking about.
Now some really silly questions... do I need to bring underwear to the hospital?? And what happens if my period doesn't end before my surgery? (Tuesday!)
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