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DIEp Flap: Recommend or Regret

Juls1921
Posts: 3
Joined: Jan 2020

Good morning everyone! I am looking for testimonials of people who have done the DIEP Flap reconstruction.  Do any of you regret having the procedure?  Do any of you recommend it?  Any help, advise would be appreciated!!

 

My backstory.  I am a 38-year-old mother of two boys (4 and 6).  I live a VERY active lifestyle (running, weight lifting, kickboxing, swimming, etc.).  Two years ago I was diagnosed with primary mammary angiosarcoma and underwent a simple mastectomy.  Due to the nature of this cancer I was hollowed out pretty good.  I do not have enough tissue or skin left to do expanders.  My only real option is the DIEP flap.  I am grateful for my recovery but hate wearing prosthetics all the time. I waiver between wanting this done to feel "normal" again and feeling selfish for putting my family back through another surgery and recovery.  I feel as though some of my joy was taken through the diagnosis/treatment process.  Has reconstruction helped any of you to move on?  Or feel whole again?  Is it worth the risk of surgery?

2Floridiansisters's picture
2Floridiansisters
Posts: 384
Joined: May 2010

Hey there Juls I had this done 5 years ago after having breast cancer twice. There are days I wish I had never done this but the days I'm glad I did are more than the days I wish I hadn't. I once was a 44 DD, now I am a 38 B, I asked for smaller boobs and I got them, I also have lost weight and that's the reason for the smaller band size. I don't have nipples, I have sort of circular scars where my nipples once were. I am still numb all over my abdomen, I can feel but not feel at the same time. It's like when you go to the dentist and get a shot in your mouth and you get all numb, you feel your gums or whatever are numb but you don't feel what the dentist does. That's exactly how my body is. That's the strange part I dislike. At night when I lay in bed watching tv, I swear I will feel this need to itch and I go to itch my skin and nothing I do makes the itch go away. The itch feels like it's on the inside of me so I naturally want to scratch at my skin but nothing happens. The itch will still be there.

I no longer have a waist, it just disappeared, I am shaped pretty much like a banana now. That's pretty weird too, where did it go...your shape completely changes. You think they're gonna remove your pooch and you'll have a great shape, that's not really the case for me. I have a deep looking hole that is now my new belly button, it looks like a opening to a tunnel, just dark, doesn't really resemble any belly button I've ever seen. 

Does this option have any benefits, beats me, my two new boobs don't match at all, one is way bigger than the other, bras and swimming suits are hard to get a good fit. because I have "B' cups now I almost appear flat chested in a t-shirt. There is no natural slope to these humps I have, they are shaped a lot like a hamburger bun. I never went for nipple tattooes, just didn't feel like they would change anything. 

 

The scar that goes all the way around me for the most part hasn't faded all that much, guess I was one of the lucky ones. (Not) I am alive, YAY, if I could go back in time would I do it again, the answer is YES because I was never perfect before any of this so I figure at least I get to keep living, so I don't look all that great, I never did anyway. Did I expect beautiful and sexy, yes and I didn't get it but at least I am alive, I think that's the most important thing in all of this. We do what we choose to do to keep living, so don't go into it thinking you will come out looking gorgeous, you might, you probably won't, but at least you'll still be alive for some time longer, right? 

 

Your new breasts won't have any feeling in them either. None, I like to tell the God's honest truth, sorry if you were expecting some fabulous great story, the outcome is you get the best they can do, some doctors do great jobs and some do their best. Maybe it also depends on what they have to work with from the get go. Hope you make a decision based on what you are most comfortable with. I wish you well. 

Juls1921
Posts: 3
Joined: Jan 2020

Thank you for your candor. 100% honesty is what I'm looking for here. Thank you for sharing your story with me! I hope you are well and will continue to be!

Elaine_wi's picture
Elaine_wi
Posts: 119
Joined: Jun 2017

I knew that I wanted DIEP flap reconstruction because I thoroughly researched my options and concluded that DIEP flap offered the best quality of life for women who choose reconstruction. Get the best plastic surgeon with a lot of experience doing DIEP flap. It takes a very dedicated and highly skilled surgeon who is willing to to dedicate the time to become an expert in mocrovascular surgery. In my opinion there really isn't a risk with the right surgeon.

And, to answer your question, yes, this reconstruction surgery helped me to move on. I needed to wait a few months after my double mastectomy because I had to have radiation and then heal from it. I hated putting on the prosthetic bra every morning. I actually like my new breasts better than the "original" ones. They are more upright, more comfortable, and I have the freedom of not having to wear a bra!

It's very considerate of you to not want to put your family through another surgery and recovery but really, it's not about anyone but you. I took two months off from work but didn't need any help for everyday activities. I wish you the best!

Juls1921
Posts: 3
Joined: Jan 2020

Thank you so much for your story!

chubbsup
Posts: 4
Joined: Mar 2015

I did have implants, so I can't any advise kn the issue. What I did want to add was that I did have 3d nipple tattoo and it goes a long way in making you feel better about yourself.

Good luck and good bless.

NewNormal
Posts: 1
Joined: Feb 2020

When I was presented with options for reconstruction, the flap immediately felt like the right choice. A year later I still feel the same. I was unable to use the stomach tissue though, so the inner thighs were used. It was a painful and long recovery, but the benefits outweighed the negatives. My breasts feel very much the same as they did before. They are warm, have blood flow, and they are soft and act natually. I have some tactile feeling, more as time goes by. I agree that the surgeon should be researched thouroghly! This is a very delicate and difficult surgery. Very few are specialists. 
I think after any moving around or removal of our "parts" will leave us a little out of sorts for a long time., if not forever. There is a little body dismorphia of sorts to go through, at least for me there is. For me it wasn't like a nice thigh lift and new breasts. It is that my body I've been living in all my life is different, just different. But I'm alive, and healthy. I can't beat that. Listen to your gut. Good luck! 

bonbondidit's picture
bonbondidit
Posts: 117
Joined: Jul 2014

I would love to give you my outcome but my DIEP Flap was cancelled due to this crazy Cov 19 virus. However I have been to PRMA in person in San Antonio TX ,  they are wonderful and so professional and have a great rating.  My doctor is Dr. Nastala. They say his phase 1 looks like phase two already happened. But realistically it is best to come to your own conclusion. I do love this facility. My surgery was scheduled for April 13th. I will be first on the list most likely next year.

dlaw1's picture
dlaw1
Posts: 8
Joined: Dec 2015

Hello Juls1921,

I read your message and had to immediately respond. Just a bit of my background; I was diagnosed with Atypical Ductal Hyperplasia of the left breast back in 2015. I ended up getting 2 lumpectomies back to back in November/December of 2015; after the doctor's discovered from my first lumpectomy that there was actually non-invasive cancer (DCIS) found in my pathology report. I was very diligent in attending my every six month checkups. Everything was good until April of 2019 (DCIS/Non-Invasive Cancer in same breast); I had a reoccurrence and after all the multiple biopsies and crap over the years the next and only option was a mastectomy. When I was thinking about a mastectomy prior to choosing the lumpectomy back in 2015 as a preventive option; I did the research and after much thought between implants and DIEP Flap; DIEP Flap would had been my option back then. I did not want to go the implant route because of the potential danger of leakage and perhaps trading off one form of cancer for potentially another (ALCL) https://www.healthline.com/health-news/rare-lymphoma-breast-implant#1. So after taking that Oncotype Test (to test the least likely % of a reoccurrence) I went the lumpectomy route back in 2015 because it was still a low percentage at I think 11% or 13%.

Fast forward/DIEP Flap Graduate (2020): I’m actually glad I did go the Flap route because prior to my surgery one of the members where I instruct and personal train at; told me her daycare worker had implants for 10 years and apparently this whole time her body was treating them like a foreign object and basically got to the point where she couldn’t lift her arms over her head due to so much scar tissue damage. Luckily she got them out and it did not cause any cancer, but she ended up having to go back and get the Flap after all that time just this past year in 2019 as well.

Journey To The Flap: The doctor who has been handling my case all these years has been nothing but great but he knew that I didn’t want implants and sadly we had to part ways, but that was not until after he made sure I was well taken care of and referred me to one of the best surgeons and reconstruction physicians in the area.  I had two surgeries done. One surgery took place in June of 2019 (removal of breast tissue and the DIEP Flap procedure/creation of my new belly button; total around 5 hours) and the final reconstruction that took place after 12 weeks was done in September of 2019 (lift of the right breast and the bells and whistles were done). Now, I was blessed that they found it early and so when they tested some of my lymph nodes it had not spread so this is why I was able to move into my transition quicker. The plastic surgeon agreed to do the DIEP Flap on me by in April of 2019, but that was also in contingent if I gained enough weight by the time of that June surgery or he would have to take it from my butt; and I wasn’t trying to have that…LOL!

The challenge for me was I had just transitioned prior to the cancer diagnosis to Vegan and so I had to do some adjusting to make sure I kept weight on that I gained in order for them to use my abdominal area.

Now the difference from what my understanding is that back then they used to include muscle into the flap procedure; whereas now the focus is more of getting the fat tissue from your butt, stomach, or if you got any back fat. They may cut the muscle but don’t include it when they do the reconstruction and connect the blood vessels. The plastic surgeon said that way of the procedure has changed over the years and the way he made it sound was that majority of the hospitals stopped doing that method. But it doesn’t mean it still don’t exist. Anyhow, my surgeon did end up having to use both sides of fact tissue of my abdominal area to form my left breast because I was a smaller frame.  However, I am sitting here today and it being almost a year…in saying it was the best decision! Also, in March of 2020, I just had my tattooing of the nipple part from the remainder of my reconstruction complete and so we call that graduation day and so I’m done! I had a really good surgeon and that is key with any procedure. So, make sure you get with a physician you trust and go with your gut because this is a major decision to make. It feels much more natural and I lie to you not, if it wasn’t for my surgical scar; my husband was like a person wouldn’t even know I had a mastectomy. Now, my core after this second surgery did get much weaker and I see you are active like me in doing kickboxing, etc…So don’t rush your recovery. I am just now about to start my shuffle jog/walk portion of what my PT wants me to do to stay on track. I am not back to burpees, etc but I feel great and know I’m recovering well because I am doing what I supposed to. A few other things I would suggest a compression sleeve or ask your physical therapy if you can be prescribed one because you are active and watch for any signs of lymphedema due to the nodes removal. I surprisingly experienced a mild case of lymphedema but because again I had good doctors and the man upstairs; it was caught early enough where it was reversed. It has been studies that if you catch lymphedema in stages of 0-1 it can be reversed. I’m living proof it holds true. They tested me back in November 2019 during my check up; this is after getting the proper care on this matter starting back in August; and my tests came by normal in reference to any signs of lymphedema. But you should still be cautious and like for me I have to wear my compression sleeve and do the lymph machine regularly for the first 2 years even though signs are back to normal because the physicians told me your first 2 years post-surgery is a patient’s most critical.  The final thing I like to share that these two thing will be your best friend to help with scarring:

https://www.palmers.com/cocoa-butter-formula-products/85-scar-serum.html

https://www.amazon.com/Rolyan-Massager-Scarring-Sensitivity-Incisions/dp/B0745JL8G6

Hope this helps/Well Wishes,

Dana

sportsmom1456
Posts: 5
Joined: Apr 2020

I was 44 when I got my diagnosis (10 years ago) of IDC. I had a masectomy on my left side only. I immediately had a tram flap reconstruction. I really wanted to have a diep flap procedure but no one in my area did them. The closest plastic surgeon who did the procedure was 2 hours away. I had two young teenagers at the time and didn't want to be so far away from them so I went with the tram flap. Do I wish that I had gone to the other dr.? Yes, I do. My biggest complaint is that I have a hump underneath my"new" breast and I feel like I look like a giant lollipop on a stick. I have actually had a doctor ask me if it was a lipoma. It is still tender and sticks out when I wear summer shirts. I feel like it is very noticeable but am told that it's not. I do have a "new" belly button which looks nothing like my old one but I don't care about that. It looks nothing like a hole or tunnel. I do have the same problems with itching and trying to scratch the itch unsuccessfully. I also have an itch where my nipple was but nothing to scratch, that drives me nuts sometimes. If I had to do it all over again I would get the diep so I don't have the huge hump and tenderness from the muscle they used for a blood supply. I have had no complications and have healed perfectly. Other than having two different looking breasts I'm very healthy. Hope this helps you.  

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