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Topic: BRCA1 Positive and DIEP Reconstruction

Forum: Genetic Testing —

ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, and mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM)

Posted on: Sep 13, 2011 11:01AM

zoglog wrote:

Hi All,

First time posting to the board and I have a question about DIEP reconstruction surgery. Can anyone give me insight to this procedure?

Also, my background ....TN BC 5cm, Falopian tube cancer, L Breast removed and radiated....

Dx 5/7/2010, IDC, 5cm, Stage IIIB, Grade 3, 0/0 nodes, ER-/PR-, HER2-
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Sep 13, 2011 11:40AM mollynminnie wrote:

Hello and welcome....

I am BRCA1 positive and also had a bilateral mastectomy with DIEP flap reconstruction.  It was a long surgery, and long recovery- but I am nothing but happy that I had it done.  Please feel free to ask me any questions!

Molly

Dx 7/15/2006, IDC, 6cm+, Stage IIIA, Grade 3, 3/14 nodes, ER-/PR-, HER2-
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Sep 16, 2011 12:08PM SAMayoFL wrote:

ZogLog, I am also BRCA+ and had DIEP reconstruction on August 3.  My right side was delayed reconstruction my left was prophylactic with immediate reconstruction.  I am 6 weeks and 2 days out and I have to say I feel wonderful!!!  I know that I may not be the normal, but I went back to work 12 days post-op.  I have a desk job and I worked 6 hours per day the first week back and then full time after that. 

When I was looking at reconstruction options, implants just didn't feel right for me.  I was worried about the outcome because I had one side that was totally and completely flat from my first mastectomy and my remaining breast was a D cup.  I was also worried about being able to get images to my chest wall with implants if I was ever worried about a recurrence.  And, my husband wasn't very happy about me going through a major surgery after he had just watched me suffer through 5 1/2 months of chemo. 

I live in a small town and there is no one close to me who does DIEP reconstruction.  After doing a lot of research and talking to several women, I called the Center for Natural Breast Reconstruction in Charleston, SC.  I set up an appointment for a phone conference with Dr. Kline.  Dr. Kline spent almost an hour with me and my husband on the phone.  He was SO informative, patient and kind.  He talked about my different reconstruction options, the pros and cons of the different surgeries and what I could realistically expect from DIEP reconstruction.  I live in Florida and he is located in SC.  I emailed pictures to him, we communicated by phone and by email and I only had to travel to SC once.  The day before surgery I did all the pre-op stuff and then had surgery the next day. 

I can't say enough wonderful things about my experience with DIEP reconstruction.  Prior to my reconstruction, every time I looked in the mirror I saw my badly disfigured body.  I was sad beyond words and I thought about cancer every time I saw my reflection.  Now, when I look in the mirror I see a nice flat tummy and two perky breasts.

Dr. Kline is truly and artist.  I am amazed that he was able to take my VERY asymmetrical body and make me look normal again.  No only is Dr. Kline wonderful, kind and compassionate but his office staff is as well.  I talked to his nurse, Chris, at least five or six times just for reassurance that I was going to be fine.  I can honestly tell you that worrying about the surgery was far worse than the surgery and recovery for me.  I highly recommend you call Chris in Dr. Kline's office.  She can give you so much information so that you are comfortable that you are making an informed decision.  If you want to call me or see my pictures, please PM me.  I feel like making that first call to Dr. Kline's office was one of the best decisions of my life!

Please let us know what you decide to do!

Susan

Susan BRCA2+. AC+T finished on 03/23/2011. No rads. Bi-lateral DIEP 08/03/11 (one side immediate one side delayed). 11/05/12 mets to ovaries, uterus and peritoneum. Dx 9/15/2010, ILC, 4cm, Stage IIB, Grade 3, 4/11 nodes, ER+/PR+, HER2- Surgery 9/26/2010 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Chemotherapy 11/2/2010 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/31/2011 Femara (letrozole) Surgery 8/2/2011 Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 11/5/2012, ILC, Stage IV, Grade 3, 0/0 nodes, mets, ER+/PR+, HER2- Chemotherapy 11/20/2012 Abraxane (albumin-bound or nab-paclitaxel)
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Sep 16, 2011 12:30PM brendaclee3 wrote:

Hi Zoglog, I had the DIEP procedure this last May 2011 in Charleston with Drs. Kline and Craigie.  I highly recommend them. Both doctors are meticulous, artists, and the hospital, East Cooper, was like checking into a 5-star hotel.  As a matter of fact, it was built just for procedures such as the DIEP.  You will not find a more compassionate group of people. I am 4 months post op and can hardly believe the outcome.  I go back next month for the second stage.  Feel free to send me a private message. Best Wishes, Brenda

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Sep 1, 2017 01:14AM Seamama11 wrote:

Hi,

My name is Sarah and I'm BRCA 1 positive and scheduled for my prophylactic bilateral mastectomy with diep flap. I'm finding it helpful to read other people's experiences w the surgery and immediate recovery. I'm also curious long term how people feel. Any info is incredibly helpful. Thank you. My surgery is Sept. 25.

Thanks,

Sarah

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Sep 1, 2017 01:54AM Trishyla wrote:

Hey Seamama,

I'm not BRCA positive, but I am triple negative and I did have a bilateral MX with immediate DIEP flap reconstruction.

My experience with the surgery and recovery was pretty positive overall. It's a big operation, and a long recovery, but for me it was totally worth it. Using my own tissue for the recon made a big difference in how I felt afterward. I know I wouldn't have been happy with implants. Just wasn't for me.

If you haven't already, please check out the Diep Flap 2017 thread. You'll find a great group of women with tons of good advice.

Good luck with your surgery. It'll be here and done with before you know it.

Trish


Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)

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