DIEP 2015

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  • smrlvr
    smrlvr Member Posts: 422
    edited January 2016

    Trvler,

    Thank you for all your advice. You are right that we need the best surgeons for this procedure. I have decided to pursue NOLA. I am going to check to see if they will take my insurance. I have a few logistical questions for you. How long did you need to stay in New Orleans after you were released from the hospital? How often did you have to return to New Orleans for follow up appointments? I love the idea of two doctors making the surgery time shorter. Do you need someone to stay with you in the hotel after discharge?

    Thanks for your advice!

    Smvr

  • Ramonica60
    Ramonica60 Member Posts: 23
    edited January 2016

    Interesting.. my PS says wearing a soft bra (no underwire) is optional. I am almost 3 weeks post DIEP and my bra is uncomfortable, so have not been wearing it. About the abdominal bulge...I also have one (on one side). My PS said it is not a hernia and could be some swelling. But, I am reading that a bulge can occur after diep flap. How will they repair the bulge? I am guessing they open up the abdominal scar..sounds painful.

    SLV,What have they told you about repairing the bulge?

  • BigSister-2015
    BigSister-2015 Member Posts: 342
    edited January 2016

    Ramonica, one of the ladies on the 2014 forum developed an abdominal bulge. They ended up treating it with ultrasound. It took several treatments. I think it was some kind of scar tissue?

    I am 4 weeks post DIEP. My doc didn't have any recommendations for or against a bra (except to say no underwire), so I went without for the first 2-3 weeks. I started wearing a soft sports bra last week because it felt more comfortable to have a little support.

    I also wear yoga pants most of the time. I had gotten a pair pre-op because the women on the 2014 DIEP forum recommended them. All I can say is, "Yoga pants, where have you been all my life?" LOL. My girls love them, and now I know why! The light compression they provide on my belly is nice so that I don't feel like I am falling apart. :)

    Smrlvr, I believe that all facilities use 2 surgeons for a DIEP. There is just so much to do that it takes two of them, even if the mastectomy is already done. The second surgeon on my case was another doctor that was skilled in DIEP.

    I had mine done at a teaching hospital, so I was a little nervous about them having residents work on me. (As a nurse, I know what happens at teaching hospitals!) So, I asked my surgeon. He said that there are times that a resident will help out while a main surgeon is taking a break--after all, they can't go 9 hours straight!--but he would ALWAYS be scrubbed and in the room and residents would not be doing the nitty-gritty. I was comfortable with that.

    Also, as a teacher I have learned that the best way to learn something is to teach. I am pretty sure that there were always two nurses at my side for each of the doppler checks of my breasts (at least the ones that I woke up enough to remember!). It was good to hear one teaching the other, and to have two heads to decide if the pulse was adequate.


  • slv58
    slv58 Member Posts: 1,216
    edited January 2016

    Ramonica, my PS felt that it was due to surgery, something about the abdominal muscle weakening. I had an ultrasound and it ruled out hernia but because I have such an aggressive cancer, my PS has ordered a CT scan to rule out mets- just trying to arrange apt time. She said it is fairly common and if it is just muscle she will try and 'repair' during stage 2. Sometimes I'm better off not knowing exact details, sorry! It's funny but my bulge is only noticeable when I stand and feels fairly hard- about the size of my whole hand. When I lay down it disappears. I'm trying to stay calm and positive. I will update as I get results but expect it may take some time for CT.

  • Morwenna
    Morwenna Member Posts: 1,063
    edited January 2016

    Well happy new year ladies!

    I had my stage 2 two days ago. I was to have the right side taken down a couple of sizes, including reduction of the "side boob" effect, and also a sort of pleat of skin removed from under the left side. I fact I have waited so long since the last consult that the left side improved over time and we decided was best left alone.

    So we (well, he) reduced the right side and sorted a small dog ear over my left hip. I think I was about 90 mins in surgery and came home mid afternoon. No drains. I was given Tylenol 3 and took a couple yesterday but today just Tylenol ES seems to be fine. I can't take ibuprofen as I'm still on anticoagulants and am having heparin injections daily as I had to stop the warfarin for a few days.

    I'm feeling a bit bleh today but hoping to get out for a bit tomorrow.

    I see a specialist later this month re the subject of continuing or not the blood thinners. She specialises in cancer patients who suffer blood clots. My hematologist wasn't sure if I should stop or not!

    I think the whole thing has rather put me back into cancer patient frame of mind, but I'm hoping this is the last thing and I can start to move on. I'm thinking of getting tattoos and not bothering about nipple reconstruction. I have quite a lot of sensation now in my right flap which surprises me as I have the large football shaped flaps, and the reduction does not seem to have impaired this at all :)

    Good luck to everyone moving forward, and to the ladies coming up for surgeries in the coming year xxx

  • BigSister-2015
    BigSister-2015 Member Posts: 342
    edited January 2016

    Glad to hear from you, Morwenna! I was wondering how you were doing. So glad you were able to finally get your stage 2 done.

    Glad the blood clots seem to be under control. Most of my year was spent dealing with surgical issues. I am glad to finally be moving on.

    I was just thinking yesterday if I want to go with 3D tats instead of nipples. It is nice to go braless and be smooth. We'll see.

    I see the PS for my 5 week check on Tuesday. I have some pleats (great term!) in my breast scars that need to be dealt with along with some fat grafting for somespots that have sunk in. Abdominal scar looks gook. A little wonky at the ends, but not bad.

    I am feeling pretty good. I only take pain pills at night. My belly feels swollen all of he time but looks good. I mostly feel weak. I suppose 5 surgeries plus sepsis will do that to a gal, so I am thinking of asking for a PT consult.

  • Trvler
    Trvler Member Posts: 3,159
    edited January 2016

    Smrlvr:

    I think I was down there 11 days for the original surgery. I was in the hospital 5 nights instead of 4 because I had a bit of bleeding and they had to go back in. You will need someone to stay with you. The washing and drains can be tricky to do on your own at first. I think some people may have done it on their own. If you could consult with them before surgery in person, I encourage you to do so. If there is a particular surgeon you want, tell them before you go there as you will get who they want to give you otherwise. I will probably go back for Stage 2 in April. Other than that, I don't know that any return trips are needed. They also work with a handful of hotels to give you room discounts and have one place that you can stay for free if you have a cancer diagnosis and they have room. I am happy to answer any questions you may have. YOu might want to PM me because I don't' always read this thread.

  • Morwenna
    Morwenna Member Posts: 1,063
    edited January 2016

    Ya this "pleat" under the left flap was quite pronounced right after surgery, and still was at my 6 week check, to the extent that the surgeon agreed with me that it needed fixing.

    But the dubious benefit of having to wait nearly a year before having the revision meant that there was plenty of time for things to settle down, and over that time it resolved almost completely!

    Bear in mind that scars can take one to two years to mature, and I know plastics surgeons sometimes tell their patients that if they are unhappy with the result in a year they will revise it!

    Problem is that we want what we want straight away and be done with it!! But it is a process 😊

  • omickijo
    omickijo Member Posts: 39
    edited January 2016

    I'm scheduled for my DIEP flap surgery June 6th, 2016. I was DX with DCIS in my right breast last May. Had a lumpectomy, re-excison, and 33 radiation treatments that ended in mid October. At a follow-up appointment with my oncologist I was scheduled for a mammogram so that they could check my right breast every six months. To my dismay there was some suspicious calcifications they were concerned about. Biopsy revealed Atypical Ductile Hyperplasia which is not cancer but they wanted to remove it asap. I decided (with my husband) that I was over this and didn't want to deal with it any longer. Had rt MX just before Christmas with plans for MX for the left when I do reconstruction. Six months need to pass on my radiated breast before PS will do surgery which works for me because I'm a 46 y.o. "atypical" college student in her senior year. (I'm over that too. Just want to be finished with school as well.) :)

    Originally I wanted to have a GAP surgery because the stomach scar from DIEP is very disturbing to me. (Vanity I'm sure). I live in Boise and had to drive to Salt Lake City for a microsurgeon. I found a great surgeon in Dr. Reuben. I'm active...I mnt bike, ride my horse, kayak, paddle board, yoga and I had met with a PS here in Boise that wanted to do a Lat flap on both sides. Using my back muscle was not within my comfort zone. I'm fairly thin. I'm 5'9" and weight between 140-145 depending on how close I am to finals. (I forget to eat when I'm studying hard.) After being given the options of DIEP and IGAP by Dr. Reuben, with both producing a small B, probably an A cup I almost decided not to do either and remain flat. I haven't been bothered by it too much and a long surgery with a long recovery was not very appealing for a cup size that will potentially be smaller than I am now. After reading so many stories on these discussion boards I decided I'm going to do it. (PS did tell me that he could add more fat if needed by fatgrafting at stage 2.) My vanity had me looking at tattoos to cover that stomach scar and there are some great ideas out there. I decided not to do the IGAP for a couple of reasons. My surgeon has not done very many of them, and I was concerned over possible problems long term with sitting. I have a bony sit bone type of butt now. I don't need to expose those bones too much more. Especially since I need them for my saddle on my horse and my bike.

    Anyways, I'd like to thank everyone for posting their stories and experiences. I have read through this one, DIEP 2014 and DIEP 2015 too. I wanted to find the right choice for me. This forum was a great way to make a decision that would be my own.

  • Morwenna
    Morwenna Member Posts: 1,063
    edited January 2016

    Omickijo

    Pleased for you that these threads helped you decide on how to proceed :)

    The tummy scar seems daunting, and it can be, but it tends to be at or around the bikini line, and the scars do fade, although that may take a year to 2 years before wysiwyg!

    Good luck for a successful surgery.

  • BigSister-2015
    BigSister-2015 Member Posts: 342
    edited January 2016

    The tummy incision is what I was most afraid of with the DIEP as well. Now that I am on the other side, I find it doable.

    It is the hardest part to recover from, but I am not unhappy with the scar. It is low and hides under my panties. Mine doesn't look too bad, and I am only 5 weeks out from stage one, so I have hope.

  • CoolgrammieNC
    CoolgrammieNC Member Posts: 54
    edited January 2016

    Feb. 8, 2016 - BMX w/diep - Charlotte, NC

  • NotAgain2015
    NotAgain2015 Member Posts: 223
    edited January 2016

    welcome coolgrammie, best of luck to you on 2/18. I'm in Charlotte also. Wishing you well!!!

  • CoolgrammieNC
    CoolgrammieNC Member Posts: 54
    edited January 2016

    thank you NotAgain2015, I'm so glad I have someone from this area to ask questions. Did you have your surgeries at CMC/Levine? Is there anything special I should bring with me? Or have at home

  • NotAgain2015
    NotAgain2015 Member Posts: 223
    edited January 2016

    hi coolgrammie,

    I way over prepared and used hardly anything I had bought in advance! Yes CMC/Levine. My best purchase was a power recliner. I sleep in it still! I tried sleeping in bed with pillows but it is hard to get comfortable and stay comfortable when you are trying to sleep.

    Drain management is the biggest hassle. The camisole they suggest with drain pockets is good, however most of the time I was not wearing anything and I used pink pockets where I could attach them inside a big shirt. However the hospital will provide you with the most useful drain holder of all, definitely go home with at least two of them! Comfy sweat pants or pj bottoms or I am now wearing yoga pants. You won't be able to wear anything tight at your waist for quite a while. I'm 4 weeks out now.

    Another useful item is a bed buddie - one of those things you can heat up in the microwave - it helps with muscle aches. It helped me get to sleep sometimes too.

    You will definitely want help at home for the first week home, maybe the 2nd also. My Sister stayed with me in the hospital and then my DH took over once home and was wonderful.

    Best of luck to you!

  • CarolinaAmy
    CarolinaAmy Member Posts: 281
    edited January 2016

    Coolgrammie and NotAgain2015, I'm in Charlotte, too! I'm being treated at Levine and have just about decided to have BMX/DIEP with Dr. Robinson sometime in mid-March. I'm VERY interested in hearing about specifics to their protocol, since it seems quite different from many women's experiences (especially those who have gone to NOLA). Do the surgeons use compression and binders? And is someone allowed with you during the pre-op process?

  • CoolgrammieNC
    CoolgrammieNC Member Posts: 54
    edited January 2016

    Hello CarolinaAmy

    This has all been a whirlwind experience so far. I'm not so sure about protocol. I am so new.My surgery is scheduled for Feb 8, my BS is Dr.Sarma, really like and feel very comfortable with her. she will sit and explain anything I need to know. My PS is Dr. Lefaivre. I have my pet-ct scan Jan.20 and pre-op Jan. 28. Will keep you posted if I learn anything new.NotAgain is the one who has a lot more knowledge, she has already had her surgery and is on the mend..so happy for her

  • CarolinaAmy
    CarolinaAmy Member Posts: 281
    edited January 2016

    Good luck, Coolgrammie! I just started a thread for those of us having reconstruction in Charlotte. There may be more of us and we can use all the support we can get, right?

  • NotAgain2015
    NotAgain2015 Member Posts: 223
    edited January 2016

    Hi Carolina and cool.

    No compression or binders for me. Their method is similar to BigSister's. And when you say pre-op process not sure what you mean. But I have always had my DH or sister with me all the way.

  • CarolinaAmy
    CarolinaAmy Member Posts: 281
    edited January 2016

    Phew. By 'pre-op process', I was talking about when they bring you back to get changed, put in the IV, all the pre-surgery waiting. I'm glad to hear you don't have to wait around alone.

  • BigSister-2015
    BigSister-2015 Member Posts: 342
    edited January 2016

    CarolinaAmy, My husband was allowed to be with me right up to the minute they wheeled me into surgery, so you should be good to go. It is good to have someone there as they are getting you ready.

    What to Bring to the Hospital

    As to what to bring--not much. I used

    • toothbrush/toothpaste
    • phone/charger/extension cord
    • lip balm
    • Biotene moisturizing mouth spray
    • lanyards
    • clothes to wear home (loose pants, loose top or button/zip up top)

    Frankly, I hardly remember my five days in the hospital. I know they walked me around, but I don't remember doing it. I lived in the hospital gown, which is convenient with all that they have to do with you. I probably wore another hospital gown as a robe since I didn't bring one.

    I did have my phone and I apparently texted people and FaceTimed my kids, but I don't remember. (My friends and family said my communication was pretty wonky!) So, phone and charger. I had a family member with me every day so they kept the thing charged. You might want an extension cord if you won't have someone to help you with that.

    I also am so glad that I bought a bottle of Biotene moisturizing mouth spray. After surgery your mouth is REALLY dry. This stuff was great. I sprayed it into my mouth and was instantly comfortable. My mouth would get very dry with the breathing exercises and the spray helped alleviate that too. Some docs keep you off of liquids the first 24 hours in case you have to go back to surgery, so having a way to keep your mouth moist without water is great.

    For the drains, a couple of lanyards are wonderful. I didn't need them in the hospital, but they were handy for the trip home. My drains had clips, so I just clipped them to the lanyard, but you can clip them to clothing as well. I had a zippered hoodie that I sewed pockets on the inside (from the hood). The lanyard is great for the shower so you have somewhere to hang the dang things. :)

    They give you non-slip socks, so I just wore those all the time. If they get dirty, they can just give you new ones.

    I bought a pair of yoga pants pre-op, and all I can say is, "Where have yoga pants been all of my life?" I wear them all the time. I got mine at Kohls. They are boot cut and came in tall. I bought my usual size. I love the light compression they give me.

    At home I usually wore loose-fitting shirts/jammies. I found that I could get them on and off without lifting my arms. I would put my head in and then bring my arms in from underneath. Taking off, I just reversed the process. Maxi dresses/skirts are great too.

    My doc didn't have me wear a bra or anything. I ended up wearing a sports bra starting at week 3, but I just went without before then.

    Having undies that don't have the band on the incision is nice, so having a package of undies that are maybe a size too big that come up closer to your waist would be nice. I liked how they covered the incision so that it didn't rub on my clothes.


  • CarolinaAmy
    CarolinaAmy Member Posts: 281
    edited January 2016

    Jill, thank you so much for that advice! I remember you talking about the mouth spray on another thread, so I've already ordered some from Amazon. This is the stuff the PS doesn't think to tell you.

    Definitely will need to purchase some granny panties....

    I was also wondering if we are EVER cleared to wear underwire bras, or if they are forever off-limits?

  • BigSister-2015
    BigSister-2015 Member Posts: 342
    edited January 2016

    Do they ever allow underwire? Good question! I see my PS for my 6 week check tomorrow, so I will ask. I am collecting my list of questions. I have learned that if I don't have them written down, I forget!

    Shopping list for post op at home.

    Pillows. The main thing I used was pillows. I got 6 standard size and extra pillow cases. That seemed to be about right. Some women get a recliner, but I don't have room for it. You'll want pillows for behind your back, under each arm, and under your knees.

    You will also want a small pillow to use in the car between the seatbelt and your chest. I regular pillow works, but something smaller, like a travel pillow, is more comfortable. The hospital provided a bunch of disposable pillows with my DIEP, so I took those home. They were a little smaller than regular pillows, so they were handy for extra poofing.

    Wedge or Recliner. Many women said they rented or purchased a recliner, but I don't have room for one. Instead, I got a wedge for my bed. I had gotten it before my BMX, and it was very helpful. It let me be upright without worrying about my nest of pillows coming undone. They come in various sizes. I got 2, a 7" and a 12". The 12" was too high (but great for the kids on the floor watching TV). So, 7" is the charm. Mine is a temperpedic.

    Shower chair. After my BMX, I used a shower chair for about 2 weeks. I didn't need it after my DIEP because I spent the worst of it in the hospital, but they send you home the next day after a BMX with TEs. I was too weak/tired to stand in the shower, so the chair was great. I had to have help washing my hair and such. I couldn't bathe myself for over a week, as I recall (after the BMX).

    Stool softener. Narcotic pain meds are notorious for creating constipation. At least 2 ladies on the 2014 thread ended up in the ER impacted. Lets not go there. I used docusate sodium, but after my DIEP they recommended Senna-S, which is docusate sodium with sennoside (an irritant to help move the bowels). The latter was more effective. The important thing is to ensure you continue to have a BM daily. If not, get right on it. Some use Miralax or other things. Also, prune juice is your best friend.


  • lessharp
    lessharp Member Posts: 122
    edited January 2016


    It is not recommended to wear an underwire, as loss of feeling makes injury possible without you knowing... I have some feeling around the perimeter and a few spots near each fipple. So I've already worn an underwire 6 wks after stage one. I'm not wearing now...just had stage 2... but will 6 weeks from fat grafting.

    If you decide to wear one after full recovery, just be sure to check for chafing or injury.😁


  • CarolinaAmy
    CarolinaAmy Member Posts: 281
    edited January 2016

    Thank you, Jill and jessharp!

  • Meme77
    Meme77 Member Posts: 2
    edited January 2016

    Hi,I'm new here so bear with me! I had Diep Flap surgery on January 15 2016. Just wondering if anybody had healing tips or tricks. Thanks

  • Moderators
    Moderators Member Posts: 25,912
    edited January 2016

    Hi Meme77, and welcome to Breastcancer.org. You may find a few tips here: DIEP- what to expect. Additionally, you may want to jump over to the DIEP 2016 topic! https://community.breastcancer.org/forum/44/topics...



  • jlstacey
    jlstacey Member Posts: 277
    edited February 2016

    Does everyone recommend granny panties that are a size up after DIEP?

  • SA8PG
    SA8PG Member Posts: 371
    edited February 2016

    I did get a few sizes larger in a brief so that I had something comfy on under that binder.

    I am sorry to hear about not getting the job to. :(. I am believing the right door will open for you & that the opportunity will be exactly what you need. Prayers for the brain scan too.

    Xoxo

    G

  • kateness
    kateness Member Posts: 18
    edited February 2016

    I liked my bikini unders that weren't too tall, so they slid out easily under the binder when I went to the bathroom.

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