DIEP 2011

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    Ladies:  My PS did not restrict caffeine after my DIEP.  I pretty much had whatever I wanted to eat or drink.  Maybe that is because they had me lose a few pounds before surgery!!  Ha ha

    ScubaCat I am 1/4 English but can't tolerate most teas, and definitely not green tea so coffee is my thing. I wish I liked teas more than I do.  Also found I could sleep on my sides (with pillow support) after just 2 weeks.  Also didn't wear any support garments home from the surgery (maybe should have) but the first few times I had to cough was very painful.

    GurleeGirl:  I was driving my car 10  days after surgery without any issues.  I think you should be fine to go to a wedding end of May but you will probably still feel tired.  I am back to work full days at my job at 8 weeks out.  So far so good. 

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited March 2011

    Hi ladies,

    Good luck to all of you w/upcoming DIEPs!  

    GurleeGirrl, I would think unless she have some unforseen issues you should be up to attending the party as long as it's not too far away and you have a place to sit and rest.  I had 2 of my 3 drains out at my 1 week checkup, and the 3rd by the next Friday.  Hopefully yours will all be out by the holiday weekend!

    bdavis, I had my DIEP w/Michelle Manahan at Johns Hopkins in Baltimore and I LOVE her!  I have heard Dr. Chang's name from other ladies, and I believe they have been positive experiences.  "Lucky" you not having enough belly fat---I know we all have our "little" issues to deal with.  Good luck on your decision!

    I go see Dr. M tomorrow for my 6 week follow up (a week early :)).  So far doing well, but waiting to see what she says the next step will be.  I'l let you all know!

    Take care,

    Sharon

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  • scubacat
    scubacat Member Posts: 113
    edited March 2011

    GurleeGirrl, if you're having surgery May4th I assume you will be in for 4 days, but you dont say if it's unilateral or bilateral diep. Assuming you are home by May 11th, the first 2 weeks are the worst, depending on how well you recover etc. If it's local you should be OK (but I think you will be tired) but if you have to travel a long way or fly, I'd suggest talking to your PS after the drains are out and see what they say. I would not have wanted to spend hours on a car journey (and there is no way I could have gotten on a plane) 2.5 weeks after getting home from this surgery. be very careful. Good luck.

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  • Iamstronger
    Iamstronger Member Posts: 378
    edited March 2011

    Good luck tomorrow Dee! 

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  • bdavis
    bdavis Member Posts: 6,201
    edited March 2011

    I spoke yesterday with Dr Allen's office and they said 4 days in hospital and then can only go 30 minutes or so from hospiatl for the next 2 days... then I could go home (an hour plus away)... so is that much different if I went across the country? If I fly to treatment in NOLA for example, is it 4 days in the hospital and 2 days close to hospital and then fly home? Or a week close to hospital? Two weeks? Another option I have is to go to Baltimore from NJ... 3 hour car ride... At what point can I sit in the car for 3 hours or a plane for 3 hours? And if I fly, how do I deal with luggage? Do I NEED to have an escort?

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  • Del11
    Del11 Member Posts: 944
    edited March 2011

    bdavis: yes, no matter where you go or how close you are to home, you need someone to help you for the first few days out of the hospital. No doctor will do the surgery without you having a designated adult helper with you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    ScubaCat:  Noted you are on tamoxifen for 5 years.  Is it because you are "pre-menopausal" or menopausal?  Did your onc ever suggest the AI's such as Arimidex?  Mine wants to switch me after 2 yrs on tamoxifen...  just wondering...

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  • Snobird
    Snobird Member Posts: 593
    edited March 2011

    BdDavis. I had my surgery in NYC 5 days/4 nights in hospital. Spent 2 days in NYC at Hope Lodge and then went to Dr's appt. Spent one more night in NYC and then my husband who stayed with me even in the hospital room, drove me home. 5 1/2 hour drive took 7 hours because we had to stop and I had to get out and walk every 45 minutes to prevent blood clots from forming in my legs. I was home for 3 weeks and then drove halfway across country to Colorado with my husband. I could only drive for about 2 hours at a time so my husband did most of the driving but we made good time.

    Good luck with your surgery.

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  • scubacat
    scubacat Member Posts: 113
    edited March 2011

    I'm going back to work tomorrow! I dont know whether to be happy or sad. This is 5 weeks 2 days after my surgery. I feel fine and have (hopefully) bought a couple of comfortable things to wear.

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  • XRAYestInMA
    XRAYestInMA Member Posts: 132
    edited March 2011

    Greetings DIEP 2011 gals ! I'm not new to the boards as I first joined back in early 2005 when I was first diagnosed with BC at the "young" age of 37. I cannot for the life of me, remember my log-in info, so I had to re-register. Anyhow, I am coming up on 6 years of being "cancer-free" and have declared this year as being MY YEAR, my year to bite the bullet and have my chest (right flat chest) reconstructed. I also hope to have my left breast removed as I now consider it a ticking timebomb :O

    I have been reading A LOT about DIEP and am both excited and freaked out at the same time. I have 2 PS consults lined up within the next 2 weeks - the first with Dr. Adam Tobias at BIDMC (in Boston, MA) and the second a week later with Dr.Winograd at MA General. (I live in MA). I also have a consult booked with a surgeon who may agree to remove the timebomb (Lefty) ...her name is Dr. Houlihan out of BIDMC.

     ..thank you to the OP for starting this thread. I'm going to go back and start reading from the beginning to try to familiarize myself with you all and where you are in this journey. 

    XR

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  • bdavis
    bdavis Member Posts: 6,201
    edited March 2011

    I am setting up an appt with Dr Allen in NYC for early April and am sending photos to NOLA... Still waiting to hear back from Chang in Baltimore... and have not yet contacted Massey in Charleston, but will be there in June for work, so may try to arrange a consult then... Loking to have flap in mid-late July... chemo ends in May and a vacation planned in mid July... so...

    It looks from photos I have seen that I may need to get a stacked DIEP/hip... NOLA tells me it their longest and most complicated surgery... 10 hours with two surgeons... Anyone have this?

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  • dannade
    dannade Member Posts: 61
    edited March 2011

    Hi scubacat:  I am post menopausal.  I started on Arimidex 1 year ago, but the bone pain was something I could not live with.  My oc tried me on Femora which was the same.  She then put me on Tamoxifen even though I'm post menopausal.  Still have hot flashes like crazy, but bone pain is gone.  I was on hrt for 14 years before my diagnosis.  It is thought it highly contributed to my BC in both breasts.

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  • Snobird
    Snobird Member Posts: 593
    edited March 2011

    Most DIEP procedures have 2 microsurgeons working. Since I had a dbl mx and immediate DIEP there were 3 surgeons one being the breast surgeon.

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited March 2011

    Had my 6 week (was actually 5 when I went) follow up w/my PS and all seems to be well at this point.  We are now looking at the end of April for the next stage which would include some revisions on the left (implant) breast and some lipo of my sides above the DIEP ab incision (I guess I should be thankful for that!:).  We also were discussing the nipple situation as they couldn't save mine because of previous surgery.  She was concerned that the "created" nipple on the implant side might flatten out over time because of where the incision from the mx is, so she was suggesting to just get the tattooed nipples (Johns Hopkins tattoos are vegetable dye, which fade over time) at an actual Tattoo Shop she recommends to her patients.  Anyone had either and or both procedures?  Just wondering about the final outcome.

    Thanks,

    Sharon

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  • SAMayoFL
    SAMayoFL Member Posts: 958
    edited March 2011

    Xray - I was actually going to post to ask if anyone has gone through DIEP for delayed reconstruction of one side and mastectomy with immediate reconstruction on the other side.  I am really nervous about the results I will get.  I too have one totally flat side and one D-cup time bomb.  I am BRCA+ and I had ILC which tends to recur in the other breast frequently.  Do you have any idea what you are looking at as far as symmetry? 

    BDavis, I contact NOLA first as it's only about a 5 hour drive from me.  They are not in network for most insurance.  I wish they had told me to sit down before telling me how much my copayment for the first surgery would be - $24,800.  I nearly died of a heart attack!!!  Money may not be an issue for you but I have ended up with Dr. Kline and Massey in Charleston with an anticipated date of November 7.  They are in network providers for BCBS and my maximum co payment will be $1,800.  Also, they told me that I have to wait a minimum of 4 months post chemo and 6 months post radiation for surgery.  I am sure that is different for everyone though. Both centers (NOLA and SC) said 3 or 4 nights in the hospital and I have to have a follow up 1 week after surgery.  Also, I will probably not meet them in person for the first time until two days before the surgery.  All of my consults are scheduled through pictures and phone conferences.   Good luck and let us know what you decide!

    Susan

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  • hester
    hester Member Posts: 89
    edited March 2011

    bdavis, I would definitely encourage you to contact the breast center at Johns Hopkins.   That's where Dr. Chang trained, and they probably do as many DIEP surgeries as anybody.  They're the best.

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  • bdavis
    bdavis Member Posts: 6,201
    edited March 2011

    HESTER...Well I already have a list of 4 doctors... can't see everyone...but will keep it in mind

    SAMAYOFL... Money is for sure a concern... and my decision may come down to that.  So far, Allen and NOLA are looking into Aetna's insurance... I have great insurance, and DIEP is covered under my plan... but there are NO in network doctors, so they have to make exceptions (which they do do) I will let the docs make the arrangements and if its a problem, I will appeal. Massey is also on my list... Dr Allens office gave her stellar reviews as well as many women here. 

    I do have out-of-network benefts, but not as good as in-network.. at worst I'd pay $6000 for everything... that's my max out of pocket for the year.

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  • XRAYestInMA
    XRAYestInMA Member Posts: 132
    edited March 2011

    Hi SAM (Susan).....Oh yes, I am definitely nervous about all this recon. With that being said, I am also a realist. As far as symmetry goes, I am hoping that going toward the route that I am seeking will aid in attaining symmetry. My remaining breast is a full C cup...but after 2 children, it is far from the perky boob of my 20's, HA HA. I think I have enough lower abdominal fatness to make two good-sized C's, but I'll find out for sure next Thursday when I meet with my first consult. My skin in the lower abdomen looks pretty good = no stretch marks from my prgenancies and only 2 tiny scars from the BSO that I had in Dec10....so I'm thinking it will provide for 2 gorgeous frankinboobs. I know when I am done with this recon, my new breasts (but they won't really be "breasts", I suppose), will NEVER be what I had before BC. Then again, my right one tried to kill me and my left one may try also - who knows ? I have no family history of BC, but my paternal Grandmother died from "some female cancer, "down there" according to my Dad ( Gee Dad, can you be a little more specific? Then again, I guess not.) My Onc. did have me sign consent to be tested for the BRCA genes during my most recent follow-up which is pending. I am hoping that when all is said and done that I will look great in clothes and not half bad without them. As far as the latter, the without clothes is only for me, DH, or various doctors (yea) to see anyhow......Sorry Playboy, you're outta luck, HA HA !!!

    Lori

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  • kcshreve
    kcshreve Member Posts: 1,148
    edited March 2011

    BDavis - if you think you'll need a stacked, and your insurance will cooperate, those at NOLA are highly experienced with doing the stacked procedure, and that's what you want - tons of experience on your side.  Others do them, as well, but if it were me and my insurance would support it, there would be no question.

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  • bdavis
    bdavis Member Posts: 6,201
    edited March 2011

    Yes, well we'll see they can work out with insurance...I know for sure the DIEP/GFlap/Sflap are all covered.

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  • SAMayoFL
    SAMayoFL Member Posts: 958
    edited March 2011

    Bdavis, I have excellent insurance as well but my max out of pocket for out of network providers is obviously a lot higher than yours.  I seriously almost fainted when Liz called to tell me my portion.  I wonder if SC is an in network provider for you.  When I called them they said they were in network for most insurance companies.  As you gather information and make your decisions please post and stay in touch.  At this point, I feel pretty confident with my decision.  I like the idea of a surgery center with a team of doctors because of the shorter surgery time.  I do not feel confident about not actually meeting anyone in person until 2 days before surgery.  As my active treatment ends and I am more able to think about reconstruction, I may schedule a trip up there in advance.

    Hester, where is Johns Hopkins and do they do the surgeries as a team?  

    Xray, hmmmmm, maybe I need to go back and do some homework on all this.  I definitely wouldn't say I have pretty tummy skin.  I definitely have a few stretch marks down there.  I never really considered that they would just sew my stretch marks on to my boobs.  I am with you on the looks though - I don't have to be a playboy model but getting rid of the hole that used to be my cleavage is exciting.  Also, I don't know about you but I miss wearing pretty bras.  Post mastectomy bras have taken me some getting used to!  My thinking is that they will leave my left boob skin in place and just put tummy skin on my right boob.  Is that what you are thinking too.  Honestly, I am still consumed by my last three chemo treatments.  I probably haven't done nearly enough research!

    Susan

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  • XRAYestInMA
    XRAYestInMA Member Posts: 132
    edited March 2011

    @Susan...IDK if any stretch marks end up in the new boob, but I'd like to think not. Post mastectomy bras are definitely not sexy...although I managed to find a few. Right now I am sporting a custom prosthesis by Radiant Impressions that I can wear in pretty bras that I usually buy at GapBody or Vickies. This is my 3rd one in 6 years (I'm allowed 1 every 2 years per my health insurance) and they do not give these babies away if you get my drift. You can probably imagine how unhappy I was a few years back when our yellow Lab puppy managed to get hold of my $3200 prosthesis and had a snack on it...yeah, not so good. I have a consult with a breast surgeon after I meet with the PS, but I plan on asking if she (the BS) will consider a skin-sparing Mast on my remaining breast. I can do without the nip since it was never my favorite anyhow. As long as the surgeon doesn't leave any sneaky breast tissue behind that can sprout a cancer in years to come, I'm good. KWIM

    Lori

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  • Marcidouglas
    Marcidouglas Member Posts: 44
    edited March 2011
    My delayed DIEP is scheduled for March 16th!!! Laughing Wooohooo!  I am excited & nervous all at the same time.  I got all my pre-op done Tuesday, March 1st.  I was looking over the paperwork and it says to bring nightgown/pjs, robe & slippers, but my questions is what kind of nightgown/pjs do you bring?  Can someone advise me of what to take to hospital?  I sure would appreciate it.  Marci
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    Marci- I took really thin material pj's (2 piece) but ended up staying in my hospital gown for 4 days.  You will be swollen and for as many times as they check you with the doppler for your vessel sounds, you will be glad you're in their stylish attire. (jk)  You won't be walking until probably 2nd or 3rd day, then with help or walking leaning against a podium like I did.  GOOD LUCK ! 

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  • Marcidouglas
    Marcidouglas Member Posts: 44
    edited March 2011

    Thanks Shelly I appreciate the feedback.  I will keep you posted.

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  • bdavis
    bdavis Member Posts: 6,201
    edited March 2011

    SAMAYOFL... I spoke with NOLA yesterday and she told me that they actually don't use the skin, only the fat, so you would not see the stretch marks if you have a skin sparing MX...

    And about insurance, Vikki called me today from NOLA and said I have in-network benefits that wwill cost me next to nothing for the procedures... she also said this a kind of rare and I am very fortunate.  I have Aetna POS II through my husband's work.

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  • kellybel1
    kellybel1 Member Posts: 1
    edited March 2011

    Hello ladies,

     I am so glad I found this website!  Tomorrow, March 4th at 7:00am I am having a double mysectomy, hysterectomy and the DIEP procedure breast reconstruction!  I have such a strong history of cancer on both sides of my family is why I am choosing such a radical treatment plan!  The cancer has been caught so early, it doesn't even have a stage level. So that is encouraging!!!

    One of my biggest concerns is how much pain I will be in once I get home.  The doctor prescribed me 10mg Loratab & 5 mg valium but it seems like I had stronger meds when I had my appendix out!!!

    Can anyone share with me how bad the pain may be right after surgery?

    Also, what type of pain meds were you prescribed after you went home?

    Thank you in advance for any information or words of encouragment!!

     ~Kelly

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  • bdavis
    bdavis Member Posts: 6,201
    edited March 2011

    Good luck Kelly!!!

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  • Snobird
    Snobird Member Posts: 593
    edited March 2011

    I didn't have a hysterectomy but did have BLMX and DIEP. I stopped taking Vicodin after 3 days in hospital and just took a combo of Motrin and Tylenol on a staggered schedule. I did have morphine in the hospital for 24 hours before I switched to Vicodin but the Vicodin made me nauseous. Not a good thing with abdominal surgery.

    Wishing you all the best tomorrow.

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  • scubacat
    scubacat Member Posts: 113
    edited March 2011

    Kelly, Good luck tomorrow. I had bilateral DIEP only (12hr surgery). I had morphine pump for about 10hrs followed by vicodin and valium. Kept both these up at home (after 4 days in hospital) for another 4-5 days, cutting out the vicodin first. Dont forget to ask for the stool softeners and keep them up at home!!! I wish you a speedy recovery.

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