DIEP Reconstruction Timing

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sbelizabeth
sbelizabeth Member Posts: 2,889
edited June 2014 in Stage III Breast Cancer

For those of you who have reconstructed, or are considering reconstruction, I have some questions...

I had a UMX on April 18 and finished rads on July 12.  My PS recommends I wait six months after rads before I embark on my DIEP adventure.  My RO is even more conservative.  "Just live your life a year or two and see what you think," he says.

I specifically didn't have my healthy side removed because I knew I'd get a better cosmetic result if I waited to do the prophylactic mx on that side along with the DIEP.  Given a choice, I wouldn't want to wait two years while worrying about the healthy breast getting ideas from her missing sister, and I don't want to wear a foobie on the missing side that long.

What has been you experience as stage 3-ers, and what are your thoughts?  For those who've had the surgery, were there complications associated with your radiated skin?  Were you pleased with the results? 

Comments

  • fredntan
    fredntan Member Posts: 1,821
    edited August 2012

    I am four months post rads with TE. There are docs that say four month minimum is fine.

    Look for ps that can do nipple sparing mastectomy. NSM.

    My ps at john hopkins told me he now likes his rad patients to wait a year. Said thats what some study at md anderson said. I think he is crazy.

    I could have had my diep scheduled for sept. Now i am starting over with newdoc. And wont find out if he does nsm until i see him in three weeks.



  • MargaretEleanor
    MargaretEleanor Member Posts: 42
    edited August 2012

    I am about a year out of DIEP. I had my last radiation treatment on April 1st 2011 and my DIEP surgery July 26th 2011. I interviewed four plastic surgeons. One PS told me I needed to wait a year after my last radiation to have DIEP. My radiation oncologist also told me I needed to wait a year or two. For me, it was a matter of sanity (not vanity); I needed to feel "normal" again. I drive six hours each way to see my PS; from Phoenix to UCLA. My results are fabulous!

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited August 2012

    I am considering this surgery as well.  I am two years out from my diagnosis.  I also had radiation.  My fears are a bit, I don't know what to call them, a bit unfounded?  What I am now worried about is "waking" up sleeping cancer cells by having the delayed surgery. I think of planting a garden, disturbing the soil and how this causes weeds to grow, etc....I feel a bit crazy feeling this way but I do worry about it. I have tried to find studies that prove this to not be true or vice versa but I haven't been able to find anything.  I am also worried about causing a major flare up of my lymphedema with the surgery.  I am worrying about a lot of issues with this but would like to feel more normal. I really don't like having only one breast.  I will check back with interest to see if anyone has anything to say regarding the radiated tissue that I also have and hopefully some insight into the other fears I mentioned as well. I hope it is ok I added them to your questions in a way, I don't want to hijack the thread! 

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited August 2012

    Kathleen, you're welcome here, and the more information shared, the better.  Thanks for thinking of stuff that I had missed!

  • mgdsmc
    mgdsmc Member Posts: 332
    edited August 2012

    Hello All

    Im just wondering if any of you were offered immediate reconstruction at the time you had mastectomy? I guess thats the best thing about having chemo first, more time to research doctors and procedures. After my lumpectomy with node disection i did mri showed another tumor so i decided to do chemo first before having double mastectomy. I saw 2 PS that were really kinda lazy only wanted to do TE with implants because the flaps were long surgeries and risk of flap failure. I didnt want to have more surgery down the line to replace TE with implants and replace in years once they expire. I was very clear with my surgeon that i only wanted NSM and to keep my own nipples and my PS only does TRAM and im ok with that. He knew a PS who would do DIEP but i said it ok the TRAM will be fine. I had a breast reduction in 2004 and thought that would be an issue but it wasnt. He said it was good since the blood supply is already directed towards the area that the new breast will be. The only thing is im having it for 2 breast instead of one which means they will be about half the size they are now. could have implants to make them bigger but as i said not into implants.

    It seems every doctor has a different time frame after radiation treatments when it comes to reconstruction. My surgery will be about 2 weeks after im done with my chemo on october 2. Im lucky my wbc's never dropped low enough to need a booster or transfusions during my AC. My onc was amazed i made it through all 4 bi weekly said that rarly happens, couldnt remember last time a patient did that. Now im on taxol weekly and no SE. I understand about wanting to feel normal again thats why i wanted to go into surgery with 2 breast and come out with 2 wanted it to be my last surgery. You ladies are very brave and i think you should continue to research different PS because i think its a perferrence of the doctor and not the standard when it comes to waiting.

  • mpetago
    mpetago Member Posts: 92
    edited August 2012

    I had to wait THREE years for my unilateral DIEP, wasn't offered immediate reconstruction, then I was told I had to wait 6 months to a year after rads. Moved to another state, new job, no time off, variety of unfortunate circumstances, and truthfully I hated every minute of it. : (. That being said, I knew I wanted DIEP, and I had to wait forever and fight tooth and nail for it, but it was totally worth the wait and frustration! Had mine at UCLA in 2007, great result. No skin issues since stomach skin was fine.

  • She
    She Member Posts: 503
    edited August 2012

    I am 3 years post BMX/DIEP. At the time of sx I was 13 years post rads on one side, 8 years post rads on the other. I'm very fair skinned and it took over 2 years for the last little spot on the left side to heal fully after the DIEP.



    Don't be in a big rush to have recon after rads, give yourself ample time to heal.



    Mgdsmc, it's certainly up to you to choose between TRAM and DIEP. I also had the choice and went with DIEP because The TRAM utilizes muscles. I didn't want to lose muscle if I didn't have to. May I gently suggest you investigate further before making a final decision?

  • mgdsmc
    mgdsmc Member Posts: 332
    edited August 2012

    I have been researching since I was diagnosed 2/15/12. I understand the issue lots of women have with loosing muscle and did want the diep at first. I'm an RN and have had patients with both procedures with great outcomes. It's the recovery and the risk of complete flap failure of the diep that I didn't want to deal with. Plus the lack of doctors who actually do the diep and im just ready to be done with this part.



    In one way I'm lucky because all of my doctors( MO BS and PS)work at the same hospital that I do and where my surgery will be. I have seen the work of my PS years before having cancer. He is the head of PS at the hospital and did offer to refer me to a PS who did diep. I know the recovery is hard long and painful but this entire process had been that way.



    I know time should be a factor in choosing surgery but for me it is. I can't start my radiation treatments until I'm healed so going and looking for a new PS would delay radiation. All I can do is hope my professional knowledge in preventing hernias can help me. If it doesn't guess I will have more surgeries in my future but that's ok as long as it isn't for cancer.

  • mgdsmc
    mgdsmc Member Posts: 332
    edited September 2012

    I have a question about diep. Why are there more than 1 step? I'm confused thought it was complete at the time of surgery. Also why are so many women going to NOLA for surgery and what does it cost?

  • jacee
    jacee Member Posts: 1,384
    edited September 2012

    mgdsmc....stage 1 DIEP surgery is mainly to relocate the flap and reattach the blood vessels. Once that has healed, subsequent surgeries are done to make sure everything is symmetrical, donor site revisions are done, nipples reconstructed, etc. Many women have more than one Stage 2 to achieve the results they want.

    So many women got to NOLa because that is where the hospital is that is solely devoted to breast reconstruction. Dr. Dellacroce, Dr. Sullivan, Dr.Trajan, and Dr. Massey operate there. Their failure rate is less than 1%. Where many women are told they don't have enough fat for DIEP by other PS's, the NOLA docs are able to work wonders to find enough to do the recon. Their website is www.breastcenter.com

    Dr. Massey did my bilateral DIEP out of Charleston. Her website is www.drmarga.com

    It is very informative about all the flap surgeries.

    Everyone's cost depends on their insurance, but they are very willing to make it happen and will battle with your insurance if necessary.

    Keep researching all you can before you decide.

  • mgdsmc
    mgdsmc Member Posts: 332
    edited September 2012

    Than you for the information. I will do more research before making my decision. I have 5 more taxol treatments so lots of research time.

    I wasn't aware that insurance would pay for out of state procedures. I'm aware of battling to get insurance to pay for in state procedures sometimes. It would be great to have the same size breast once this is done.

  • jacee
    jacee Member Posts: 1,384
    edited September 2012

    I traveled from Arkansas to Charleston. Dr. Massey was out of network with my Blue Cross/Blue Shield. I filed an In Network Exception and asked for a Courtesy Review. I was granted in network rates.

  • mgdsmc
    mgdsmc Member Posts: 332
    edited September 2012

    I was set on having the TRAM because I'm just tired and want it over. Now I'm not so sure that TRAM would be my best choice after thinking and reading the experiences of women who had DIEP. I'm still going back and forth with it.

  • fredntan
    fredntan Member Posts: 1,821
    edited September 2012

    My ps at john hopkins told me last spring he wanted me to wait 1year after rads for the deip. I think he is crazy. There are docs that will let you do deip 4 months out. I found prma docs in san antonio. They take my insurance. And i am pretty sure i will be using them.

    Start with your insurance see who they will let you see

  • jacee
    jacee Member Posts: 1,384
    edited September 2012

    The requirement for my BC/BS policy to pay in network rates to an out of network surgeon was...that there couldn't be a surgeon within 30 miles that performed that surgery. No one in my region performed DIEP, so I was able to go to Dr. Massey.

    I would say, find the surgeon you would most like to use first, then see if your insurance will cover them.

    I had a unilateral mx then did 8 months of treatment, then had to wait 6 months after rads to have my DIEP. That gave me a lot of time to research and I actually did all the insurance research and exceptions myself. Blue Cross sent me all the necessary forms and told me exactly what to do. It was a lot of work on my part, but so worth it. I know many ladies just let the PS office deal with the insurance. But I'm kind of OCD in details like that and didn't have any problem. I was very fortunate to have a cancer policy that covered my airfare and helped with lodging all 3 trips to Charleston. I had met my out of pocket the first 2 surgeries so I paid nothing for the surgeries. The 3rd one was a different year, and I paid around $2000 to the hospital.

    There is a "Charleston Bound" thread and "NOLA in September " tread and "DIEP 2012" where you can find tons of info.

    I did the same treatment as you...AC and Taxol x12 weeks. Hang in there, it is almost over!! Chemo has been the hardest part of my experience so far. The DIEP reconstruction, while overwhelming to plan...and I thought could never happen, was almost healing emotionally, as I felt I was finally doing something to restore me rather than damage me! Best to you as you find what is right for you. Don't hesitate to PM me if you want to.

  • liefie
    liefie Member Posts: 2,440
    edited September 2012

    My PS wants me to wait a year after rads for the DIEP flap surgery. I have no problem with that at all. Fortunately I have no problem with the TE that I have in, and I will just be patient. My opinion is that the PS won't make me wait unnecessarily if she did not think it was the best way to go.

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