Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

2018 DIEP Surgery

12357…79

Comments

  • TWills
    TWills Member Posts: 509
    edited February 2018

    Thinking of Fme today, hoping for a successful surgery and smooth recovery:)

    Casun19, yay you have a plan! What day is your surgery?

  • Casun19
    Casun19 Member Posts: 77
    edited February 2018

    my surgery is on the 19th.


  • Elijahgirl
    Elijahgirl Member Posts: 111
    edited February 2018

    Lula73 I left a spoke with today NOLA and it looks like they will take my insurance I also have a phone consultation scheduled for next Wednesday so we will see more to follow. It also looks like my immediate supervisors are onboard with any decision I make. Thanks again for the information it was a great help.

  • jbdayton
    jbdayton Member Posts: 163
    edited February 2018

    Good luck Elijahgirl. I am so glad you stayed persistent.

  • Elijahgirl
    Elijahgirl Member Posts: 111
    edited February 2018

    Yikes, I just realize I will be getting my biopsy report on the 3 month anniversary of my Moms death. Maybe that means she will be there with me in spirit you think.

  • bella2013
    bella2013 Member Posts: 370
    edited February 2018

    Elijahgirl, I do think your Mom will be with you in spirit through your whole journey. So glad you have a place for your surgery that will take your insurance too. I have read so many wonderful reviews from women who went to NOLA.

    Blessings

  • mitzi458
    mitzi458 Member Posts: 33
    edited February 2018

    Hi Lula73,

    I would LOVE to go to NOLA to do this! I actually had a doctor in Beverly Hills personally recommend me to Dr. Scott Sullivan at the Breast Center, but I found out that they do not take my insurance. At all. I'm afraid it would run me over $20,000 (maybe $30,000). I have Blue Shield, and it's a "Silver PPO". But when I spoke to them, they said that they don't take it from California! Even though they list it on their website. So I'm confused and sad because it's amazing the difference when I just talk to the education person.

    My doctors here in Los Angeles are telling me that the recovery time is 8-12 weeks. I cannot drive for 4 weeks. I have to stay in the hospital for 5 days. My drains will stay in for about 8 weeks, and my Phase 2 won't be able to be done for 6 months.

    When I spoke to Liz in NOLA, she said recovery time is typically 4 weeks. You can drive after 2 weeks, hospital time is 2 days, drains should be out in about 10 days. And the Phase 2 can be done in 12 weeks. !!!!! That is a huge difference. I know every case is different, but I think because they do so many, they know what to expect and can keep complications at a minimum.

    I have one more doctor to meet locally next week. They also are not "In Network" with Blue Shield, however they do something where I just pay them my deductible and that's it...I pay nothing else. I forgot to ask them if this included the hospital charges, which I doubt. So I still have to look into that.

    It's all so complicated. I wish it were easier. I'm still really confused because not only are all of the recovery times, etc. different, but I was told by one doctor that I could get an implant on my flat, radiated side and another that said I could not. I was told that I only have enough fat for one "Small C" breast if I use my own fat , the other doctor said I can get two regular C's if I use my own fat. Liz at NOLA told me that by doing a flap, it should help my numbness that I have in my left arm since it's probably from scar tissue. The other doctor said he "doubts" that it will help. One doctor told me that I should wait until I have 4-5 months at home to do this, the other doctor scheduled me for Feb. 21st, knowing I have to travel at the end of April. I also asked one of the doctors if doing sit ups or Pilates, to strengthen my abs and my core, will help with my recovery, and he said, "Absolutely not". That's hard for me to believe!

    I can't wait to see the third doctor. I hope he can clear some of this up!


  • lifewins
    lifewins Member Posts: 16
    edited February 2018

    I am having my mastectomy diep flap tomorrow.. I am still a whirlwind of activity getting ready..

    I have some peace, some deep, some fear, for now fleeting.. Just moving forward..

    Thank you for all of your information, insight and support, it has helped tremendously.

    I will report back when able..cheers!

  • bella2013
    bella2013 Member Posts: 370
    edited February 2018

    lifewins, so good to hear from you. I have been thinking about you. Praying for miraculous results for you! What time is your surgery tomorrow

  • TWills
    TWills Member Posts: 509
    edited February 2018

    lifewins, I think I missed that it was tomorrow! Will be thinking of you! Sending lots of positive thoughts for asafe surgery and comfortable recovery:)


  • Elijahgirl
    Elijahgirl Member Posts: 111
    edited February 2018

    lifewins, you will most definitely be in my prayers today, God speed and let us know how you are doing ok

  • Elijahgirl
    Elijahgirl Member Posts: 111
    edited February 2018

    mitzi458, Let me know what you find out from the 3rd opinion definitely sounds like you have some homework to do.

  • Elijahgirl
    Elijahgirl Member Posts: 111
    edited February 2018

    Hi bella2013, thank you for the kind words, I believe she will be too

  • Lula73
    Lula73 Member Posts: 705
    edited February 2018

    Mitzi- so sorry NOLA doesn’t take your insurance. Did you happen to ask Luz about Dr S coming to LA? There were talks about that not so long ago and i don’t know whatever happened with that. I will also throw another name out there for you: Dr Marga Massey. She is affiliated with NOLA, does awesome work (trained with the NOLA docs), has offices in multiple parts of the country and accepts different insurance than NOLA. She has offices in Charleston, Chicago, & Salt Lake. Worth checking out. www.drmarga.com


    Elijahgirl-so excited for you that everything seems to be falling into place!

  • Elijahgirl
    Elijahgirl Member Posts: 111
    edited February 2018

    B9! I have Intraductal papilloma & Focal usual ductal hyperplasia this however carries a increase risk for breast cancer. I was able to pull the results from the Pt Portal will see the surgeon this afternoon

  • KimE
    KimE Member Posts: 34
    edited February 2018

    FME and Lifewins - I hope all is well and that your surgery was successful!!!

    Elijahgirl - congratulations on your biopsy result!!!!

  • TWills
    TWills Member Posts: 509
    edited February 2018

    That’s great news Elijahgirl!

    Can’t wait to hear from FME and Lifewins, I sure hope they are both comfortable and healing well.

    Newusernam3 and Teaberry11, how are y’all feeling? Do you feel prepared for next week? Do you both have pre-op this week?


  • Help3
    Help3 Member Posts: 35
    edited February 2018

    Hi there! I had a bilateral mastectomy june of 2016 but due to positive lymph nodes, chemo and radiation timing and working on my masters I am finally just now getting reconstruction. I have surgery 2/23 with Dr. LeFaivre and Dr. Robinson in Charlotte, NC. I am both scared and excited!


  • Elijahgirl
    Elijahgirl Member Posts: 111
    edited February 2018

    So because of my CHEK2 mutation, family history and the close call I had last month, I will most likely have my prophylactic BMX in April. I was already scheduled for a total knee revision on March 5th, so I am moving forward with that as scheduled. We were waiting for the biopsy results to see if we could move forward with the knee surgery or move it to a later date. I have a phone consult with NOLA tomorrow so I am hoping it goes well because the Surgeon here is still hesitant to perform the DEIP (crossing my fingers) that everything goes smoothly.

  • Teaberry11
    Teaberry11 Member Posts: 66
    edited February 2018

    Hi All

    Thanks twillis for checking in. I had back to back appts today with pre-admin testing , restorative therapy, and my nurse navigator. So much more info! Came home with a bag full of things, including a list of exercises for the first 2 weeks and then for weeks following drain removal. I’m one of those people that don’t take any meds or really have a schedule of any kind. That will all change post surgery. 4/5 Times a day doing exercises and massaging the scars probably for the next 6-12 months. They also measured my arm width every 4cm all the way up for a baseline reference in case I get swelling associated with lymphedema.

    I did get slmetips as well.. since I’m tall 5’8” they suggest I get a toilet seat plastic lift thing so I don’t have to sit down too low. And they suggest I get oversize button down shirts for the first few weeks Home — no lifting elbows above shoulders for 3-4 weeks. Info overload!! This weekend will be filled with preparations. then monday i see PS for markings which I need to be careful not to scrub off while doing my Hibiclenz washes Monday night and Tuesday morning before surgery.

    I’m reading the posts all the time scouring for more tips and hopeful for everyone’s smooth recoveries.

  • opt4life
    opt4life Member Posts: 111
    edited February 2018

    Good day ladies, thanks for all the great information about DIEP.

    I'm scheduled to get a BMX and DIEP on March 7 after a recurrence in the same breast.

    I do have a question though, PS scheduled me for a CT/Angiogram and I was going to get it done while I was already at the radiologist for a CT and bone scan the other day. But the tech took one look at my non-existent or small veins and said no way I could possibly get the CT/Angiogram and proceeded to show me the oversize needle they needed to use.

    Is there another test that can be done to look at the small vessels in the stomach? Have a call in to the PS but am still awaiting a call-back.

  • TWills
    TWills Member Posts: 509
    edited February 2018

    Opt4Life, definetly get a second opinion on that but yes the needle is large. They have to pump a large amount of contrast through you at a fast rate to time how fast it goes through the vessels they’ll need to use. Hopefully your PS will be able to clarify this for you.

  • Lula73
    Lula73 Member Posts: 705
    edited February 2018

    opt4life- I also have super tiny veins. Nurse recommendations Ireceived for this issue: There is a pediatrics needle they can use that will allow the correct flow rate-see if they can use it. Day of scan drink lots of water-hydration helps dilate blood vessels- and keep your hands and arms warm-Long sleeves, gloves, uncomfortably warm in the car, gloves on til right before stick and make sure they stick you outside the CT room as it's cold in there and the cold will constrict the blood vessels. Just had to do all this after 5 failed sticks in 1 hand/arm in 1 day by 3 different people. 2 days later did all these steps and good to go on 1st stick.

  • Help3
    Help3 Member Posts: 35
    edited February 2018

    Opt4life I am a nurse and even the people with the worst veins can usually still get it. We sometimes even use 22s for CT with contrast. Get another tech. Don't get discouraged without a second opinion. Have them wrap you in warm blankets as well.

  • Help3
    Help3 Member Posts: 35
    edited February 2018

    Good luck Teaberry 11, I have my preop tomorrow for surgery on feb 23. I have already gotten some button down shirts. The last time with my mastectomy I pinned my drains to my college lanyard and had it on my neck for showers. I also put a chair in my shower and have a hand held shower head which is helpful. Good luck..think happy thoughts.

  • TWills
    TWills Member Posts: 509
    edited February 2018

    Welcome Help3, I'll get you added to our list up top:) Scared and excited is exactly how I feel.

  • Help3
    Help3 Member Posts: 35
    edited February 2018

    Twills good luck! wondering if any of you have lymphedema? I have left arm lymphedema since my axillary node dissection. Worried that surgery will exacerbate this but hoping it will improve it. I hope you girls that just had surgery are doing well! I can't sleep at night thinking of mine. I used to have a fantastic shape with real 36 d boobs and flat stomach thanks to bc I am flat as a boy and gained 20 lbs all around the belly from the tamoxifen. Thank god for diep flap!

  • Teaberry11
    Teaberry11 Member Posts: 66
    edited February 2018

    I read somewhere that post surgery it’s good to have a front opening sports bra. Is that true for DIEP flap reconstruction too? How do you know what size to get when having a BMX?

  • Runrcrb
    Runrcrb Member Posts: 202
    edited February 2018

    tberry11,

    Talk to your doctor before buying bras. Several different approaches. My doctor was NO BRA for at least 4 weeks post DIEP. I’ve read other posts where doctor had women in specific post surgery bras.


  • bella2013
    bella2013 Member Posts: 370
    edited February 2018

    Can anyone share their experience with the post menopause hormone treatments. I am concerned about side effects. Is one drug better than another

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.