Diep 2012

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  • TexasRose
    TexasRose Member Posts: 740
    edited March 2012

    Yes, we are neighbors. We drive through Georgetown at least once a month heading to Port Aransas. We have a place down there and take the toll road around Austin to get to 183 for the drive down to the coast. We also have mini season tickets for the Express so go to several games in Round Rock. I've heard such good things about PRMA here on BCO. I have never heard of anyone in Austin doing DIEP so I was curious.



    I give myself little breaks from the binder daily. It is most definitely the hardest part of this for me. Well that and having to take showers instead of baths. I like the Marena girdle linked, but when I put my measurements in it says I need to order a 2X. Now, I am NOT a 2X. Not even remotely close. So I have no idea what to do.

  • bdavis
    bdavis Member Posts: 6,201
    edited March 2012

    I also had the marena garment.. so comfy.

  • shabby6485
    shabby6485 Member Posts: 679
    edited March 2012

    Hello

    Just diagnosed with LCIS and surgeon is recommending bilaterial prophylactic mastectomies.

    Meeting with him next week to discuss options. He mentioned I'd be a good candidate for nipple sparing. Is that different than DIEP? confused.

    I am trying to get an idea of what is available. thank you. 

  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited March 2012

    shabby6485 - With mastectomies and reconstruction they can do nipple sparing (remove the inside leave the outside), skin sparing (take the nipple (and sometimes areola) and the inside and leave most of the outside skin), or take it all (I don't know what this one is called). That does not determine the kind of recon that you have. Women with skin sparing and nipple sparing can do diep, I believe - I'm sure someone will correct me if I'm wrong. I don't know if you can do a DIEP if you're taking all of the breast skin as well but I suspect it's possible.

    Hope this helps and post if you have more questions.

  • Snobird
    Snobird Member Posts: 593
    edited March 2012

    DIEP use the abdominal fat, blood vessels and sometimes, skin if required, to replace the breast tissue. It can be used with either skin or nipple sparing as well as complete mastectomy procedures. If you are not going to do RADS then immediate recon is in my opinion the best way to go. Whether or not you have skin sparing or nipple sparing depends on where the cancer is located. If it is close to the skin then the skin will be removed and replaced with skin from you abdomen. Both skin and nipple sparing procedures can also be used with implants and fat grafting procedures.

  • Chris13
    Chris13 Member Posts: 254
    edited March 2012

    What else should I ask PS? I met with my BS for the news a UMX was necessary (2 ILC in same breast) and was able to get a quick consult with the PS who will do my DIEP. I knew generally about the procedure, but didn't ask many questions. He was at a nearby hospital where he consults only, so he didn't have his staff with him.



    I have a preop meeting with his nurse and am wondering what questions should I ask? BTW, the PS is Dr. Serletti, U. of Penn head of plastic surgery. He said he has never had a flap fail!



    I hope these aren't stupid questions....and of course I will learn much more about compression garments, drains, etc. as we go along.



    So far:

    Scar questions...where should they cut (also have a long-time appendectomy keloid scar from age 12. I'm gonna look weird no matter what.)



    Anesthesia...are there alternatives? I am prone to nausea.



    When do they match the other breast...during surgery or stage 2? And since I'm determined to lose about 10 pounds after surgery (pain meds/nausea should help with that)--how will that affect the reconstructed breast? Does the fat come and go like it does in other parts of the body (mostly comes ;-)



    And any other things to ask that are important to know ahead of surgery?



    Thanks, and thanks for everyone's DIEP stories....they are reassuring in their own way given this is a kind of bizarre surgery.



  • Del11
    Del11 Member Posts: 944
    edited March 2012

    I've found that surgeons' own definitions of "failure" might be different than ours.  Ask him what complications he's had with flaps and how he dealt with them.  Also ask, hypothetically, if you were his first flap failure what would his next step be? How would he replace it? It's good to know what Plan B is.

    You don't get to decide where the incision is, unfortunately.  But you can express a preference that he make it as low as possible. Or cut around a tattoo. Or whatever. I'm sure he'll give you no guarantees on that though.

    If you're prone to nausea then tell that to the anesthesiologist in your pre-op.  The surgeon has no control over that. And there are no alternatives, no. Has to be general.

    You won't notice a 10-pound weight loss in your breast, especially right after surgery when things are still swollen. Long term though it would take more weight loss than that to make a noticeable difference (unless you're small to begin with).

  • bdavis
    bdavis Member Posts: 6,201
    edited March 2012

    I would also ask how many he does per week... I think the good answer is 2-10.

  • zillamom2
    zillamom2 Member Posts: 28
    edited March 2012

    Hi. I had a diep two weeks ago with a bmx. Does anyone else need to also have implants put in later ? I am going to because I didnt have enough on my stomach to bring me to the size I wanted. I was just wondering if anyone did have implants after diep, are you pleased with results and do the implants bother you? I am also uneven after diep because I have a defect on right side and it is a bit concaved. PS said he would fix on stage 2. Has anyone else come out uneven after surgery and had the problem fixed on stage 2? Thanks for any info you might be able to give me.

  • bdavis
    bdavis Member Posts: 6,201
    edited March 2012

    I didn't have enough belly fat so my doctor did a stacked hip flap, and later fixed one side with a stacked DIEP flap... can't you have an additional flap instead of an implant if you don't want the implant?? And I was not uneven so I can't comment on that... except that they can always even things up later.

  • Sarahmfallon
    Sarahmfallon Member Posts: 29
    edited March 2012

    I didn't have enough belly fat either, I will get back up to my original size via implants and/or fat injections in stage 2. Does anyone have any experience using fat injections instead of implants? How do they look/feel? I didn't know that was an option til today, I thought it was implants only. The nice thing seems like I can lipo where I want to lose fat and get rid of that to put in my breasts and it seems like it would be more natural feeling/looking than an implant. Any suggestions/opinions/experience in either would be appreciated!



    Also random question I forgot to ask my doctor and feel embarrassed to call - how long after the DIEP/recon did you have to wait to have sex? My surgery was two weeks ago but I'm

    Still pretty sore so imagine it would at least be a few more weeks?

  • bdavis
    bdavis Member Posts: 6,201
    edited March 2012

    Sarah... Its important to know that fat injections have about a 50% success rate, so about 50% take and 50% doesn't... pampering the injection site is important so as not to compromise the blood flow... I can see having fat injections for small improvements, but I can't see it as the solution for a big deficiency. I had lipo and fat injections and will need more on one side... I am unsure where they injected at the first stage II, but know where I need it now.

  • Paula845
    Paula845 Member Posts: 4
    edited March 2012

    Hi,

    I'm in upstate NY, an hour south of Albany.  I started looking into DIEP flap, and it turns out my insurance has two Doctors who do the procedure both in Albany.  I had wanted to use this other doctor in Westchester but he is no longer an option with my insurance. I had cancer three years ago this July, and in June it will be two years after radiation.  I had the expander changed before radiation and the thing was basically a failure a couple of months later.  I had a mastectomy on my left breast, plus Lymph nodes were removed. One doctor had a couple of bad reviews, the other one seems younger, and has only been doing Microsurgery for few years, 3 or 4.  I had really wanted to have surgery this spring, because this will be the only time my daughter will be able to help me.  I am just upset, why can't things be easy...lol...

  • bdavis
    bdavis Member Posts: 6,201
    edited March 2012

    Paula... Are you willing to travel?? There are doctors in Charleston, New Orleans, Maryland, PA and NYC, CT who do DIEP.. I live in NJ and went to New Orleans... I wouldn't use a doctor you don't 100% believe in... this is a delicate surgery and experience is key.

  • Del11
    Del11 Member Posts: 944
    edited March 2012

    There's also PRMA in San Antonio, TX

  • Paula845
    Paula845 Member Posts: 4
    edited March 2012

    Albany is traveling, lol...its close to two hours for me.  New York City is 90 minutes from me.  Its just that my insurance has only two doctors who do the Diep Flap, and from looking at them online, one just doesn't look like he has done many, and the other has some poor reviews and a sanction.

    I don't have the money to pay out of pocket right now. There is a doctor in Westchester, who from his webpage does good work, and has good reviews, but he only does tram flap.  I had thought he did diep, and then I double checked and he just does Tram flaps.  I am not too keen on a Tram flap because I have other illness, and I am afraid the Tram will make everything worse. I know someone who had a tram flap and she had no problems.  She even had a baby afterwards!

  • bdavis
    bdavis Member Posts: 6,201
    edited March 2012

    There is a doctor in Greenwich CT ... maybe do a google search and see who it is and if they are in network... or Dr Levine in NYC

  • bdavis
    bdavis Member Posts: 6,201
    edited March 2012

    Dr David Greenspun...Cos Cob Ct

  • GointoCarolina
    GointoCarolina Member Posts: 753
    edited March 2012

    Paula845,you are not far from me,I am about two hours from Albany.Not sure about your insurance,but mine states if there is not a specialist within 60 miles doing a procedure,I can request out of network benefits.That being said,I am still fighting my insurance(MVP HMO) as they denied my request for bilateral SGAP.I will appeal,but we are changing insurance this fall....putting recon on hold until early next year so I can go to the doctor of my choice..out of state.Would be happy to share with you what I have learned about dealing with insurance.

  • wrsmith2x
    wrsmith2x Member Posts: 410
    edited March 2012

    Sarahmfallon, I was told 3 weeks from surgery for sex.  But as I am finding on these boards that all doctors do not give the same instructions.

  • dressager
    dressager Member Posts: 77
    edited March 2012

    Hi all. Thanks for your good wishes, Texas Rose! I've been following your updates and am so happy for you! And--I agree: binders are a PITA!

    So, here's what happened: instead of getting my DIEP recon on 2/29, on 3/5, I went in for total hysterectomy, bilateral oophorectomy, removal of giant ovarian mass, and--if necessary--staging of mass. The week before surgery consisted of me running back and forth for all kinds of tests.... and then retests when they thought the saw suspicious stuff. Here's a hot tip for health care providers: don't tell a breast cancer patient that you see a lung mass on their chest xray unless you are sure you see a mass on their chest xray. Thanks for 36 hours of terror. Sealed

    Surgery was "quick and clean," per my surgeon. Mass was even bigger than expected (18cm!!!!) but initial appearances were benign. I had the same anesthesiologist that put me under for my BMx and, man, is she ever good -- not one lick of nausea and the easiest possible recovery. I was up and walking within 6 hours of surgery and was released yesterday, the morning of the third day. I got my full pathology results last night---all benign. HOORAY!!

    Today, three full days post-op, I feel nearly normal. My incision is about 7 inches up and down, smack down the middle of my abdomen--this was blessed by my plastic surgeon. I am wearing a binder and it's the most annoying thing about recovery so far. Pain is easily controlled by oxy/acet + ibufrofen.

    Unfortunately, my eurphoria at being cancer-free crashed a little bit an hour ago: my plastic surgeon won't do reconstruction for three months. I know this is nothing in the scheme of things but I am gutted anyway. The most important thing in my life--horse riding--is still months away. This probably sounds dumb to most but I can't tell you how horrible I feel. Cry Not to mention, I'm not sure how I'll make this delay work with my employer. I'm a project director--working on and off for months at a time doesn't really fly in my field. I don't know what I'll do but trying to stay positive.

    I've enjoyed following everyone's stories---and "meeting" the new members that have joined in the last couple of weeks. Hooray for all of us! 

  • charlestoncat
    charlestoncat Member Posts: 5
    edited March 2012

    Hey ladies!  I am new to this blog but am so glad I found it.  I have gotten a full ride - lumpectomy, needle biopsy, BMX, rad, chemo, expanders, implants, implant removal and finally DIEP on 1/12/12.  So 2 months out now and even with complications (tummy incision split wide open) am happy I did it. Last night another little complication popped up (or I should say out) and wondered if anyone else has had this happen.  My lumpectomy scar had become sore and red and my PS thought it might be a seroma.  So after "waiting and seeing" last night it "popped" and about 20cc of liquefied fat poured out.  My PS said not to worry and my wound folks fixed me up this morning but it is sore as the dickens.  Also - my PS's are James Craigie and Richard Kline in Charleston, SC - 2 of the best.  Plus Charleston is a lovely place to recuperate!

  • julianna51
    julianna51 Member Posts: 438
    edited March 2012

    Being the totally crazy person I seem to be these days....I called again to Mayo just to make sure they take my insurance and then called my insurance company to be sure they contracted with Mayo.   A little bit anal right now about this surgery!   All said, I am good to know.  Also was told by Mayo that the estimate they gave me (total cost w/o insurance) included everything anticipated....hospital stay of 5-7 days, everything.   That was good to hear.  

    Now...to just be patient for three months.   I know how quickly that can go so it will be upon me before I know it....and then I'll be thinking "yikes, I'm not ready"!

    Thank you to each of you who responded about how quickly I might be able to take a road trip.  Reservations are made and we're headed to the Telluride Blues and Brews festival in September.  Will be fun!

  • Paula845
    Paula845 Member Posts: 4
    edited March 2012

     Thanks...BDavis...I saw Dr. Greenspans website. His work is amazing.  I had met with Dr. Koch last summer, and was going to use him. Then my insurance changed and I have to check, but I don't think I can go out of network, not without a hefty fee.  I may see if they can just swap out my expander for a smaller one.  I had radiation and I have capsular contraction and the skin is thinning and it does need to come out sooner or later...so I may wait...I am going up to Albany to see my oncologist and I am going to try and interview these doctors and ask the oncologist about them.  I wish I had been feeling better, I would have had it done last year.  I am going to meet with the doctor in Dobbs Ferry who does Tram flaps and see what he has to say also.(The expander is a joke, but its better than nothing)

  • Paula845
    Paula845 Member Posts: 4
    edited March 2012

    Hi Pandazanker...Sorry to hear you have to postpone the surgery...I would love to hear about what you have learned about insurance.  BTW...I'm in the Poughkeepsie area.

  • Sarahmfallon
    Sarahmfallon Member Posts: 29
    edited March 2012

    My doctor mentioned that because of the DIEP, if I had weight gain after surgery some would go to my breasts, since the breasts were "wired" with stomach vessels my body still thinks its my stomach.  Anyone experience this?  He said he had one patient that asked "so my burgers will go to my boobs?!" :)

  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited March 2012
    Sarahmfallon - I've heard that DIEP foobs will gain and lose like the rest of our bodies. I certainly hope it's not like the belly and hope it's like the other boob. I had a UMX and if they gain and lose weight differently, I may be in for some really goofy looks. OY!  I guess I can put that on my list of questions for the PS who I see on Monday for my 3 month follow up.
  • Seashellie
    Seashellie Member Posts: 152
    edited March 2012

    I'm 3 1/2 months out from my bilateral DIEP and have gained about 10lbs (living on the couch recovering during the holidays...) My foobs have definately grown with my weight gain unlike my natural ones ever did. I'm working to lose the weight but bummed because I know my boob size will be the first to go.

  • Sarahmfallon
    Sarahmfallon Member Posts: 29
    edited March 2012
  • TexasRose
    TexasRose Member Posts: 740
    edited March 2012

    dressager- I've been worrying about you! Glad to see you back! I'm so sorry that you had this bump in the road. I certainly understand how disappointed you must be to have to delay the DIEP. It takes a lot of courage to get ready for the surgery and to have to postpone it- well that just sucks. But I am so glad to hear the benign results on the ovarian mass! And a big thumbs down to your health care workers for the lung mass statement!! And hey, don't apologize about the horse riding. It sucks that we have to give up the things we love even temporarily.

    I have to admit that I have been having doubts in the last few days and wondering why in the hell I ever decided to put myself through this. I was 3 years out from MX. Chemo was long done. I was healed and feeling back to my old self. And then I decided to let them- as my DH puts it "filet me like a fish". I know this is temporary and these feelings will go away. I will heal again and I will love my new breasts and flat belly, but right now my emotions are on the edge. I am a little over 3 weeks out. I am stiff and tight and I hate this damned binder. And yesterday I had probably the best day I've had since surgery. I felt great. And yesterday afternoon, I came down with a stomach virus and I spent the rest of the day hunched over the toilet vomiting until there was absolutely nothing left in me. Not any fun under the best of conditions, but throw in a hip to hip ab scar and a binder on top of that and it was one of the most miserable days of my life. Because of the stomach bug, I didn't take my meds last night so no sleep aides. And that means no sleep for me because I don't sleep without help anymore. I am so sick and tired of sleeping on my back.

    So, today I am weak although feeling better from the vomiting. Very tired due to no sleep. My emotions are all over the place and I can't stop crying. It's cold again and pouring rain here. Sorry for the whine, but if anybody understands it's you ladies.

    Oh and to top it off, I got a jury summons in the mail yesterday for the first week in April. Wonderful. I'm not even wearing real clothes yet. That should be fun.

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