Diep 2012

TJP1071

Ladies....

I have some questions that only others like ourselves can truly answer.  I have spoken to my PS about this subject only to hear that I am normal and he can fix it. I'm kinda tired of this answer along with the one that says "everyone heals differently"  UGH!  LOL

Bi-Lat Mastectomy w/DIEP Feb 16th....in the hospital for 2 weeks......3 surgeries (2 extra on the left breast)....Leeches and all to get it to survive.  

Ended up with A LOT of hard tissue doc calls Fat Necrosis.  

Round 2 June 5th.....To break up hard areas and close an abscess that had formed and was now open and being packed twice a day.  

My question is ....

How is heavens name can a breast that is 3/4 hard be all necrosis? and how can it survive by just being broke up? Wont your body absorb it as it breaks down?  Both breasts were hard left more than the right....I can tell a bit of a difference in the right breast and 1 area of the left but the major part of the left is as hard as a rock.  I can't see how so much of a breast can be necrosis and still manage to be ok?  I think I don't understand the whole thing.  

Has anyone else experienced this ?

I also have the area that had the abscess open again cause it is back.  Back to packing it twice a day again.  Waiting for it to heal from the inside out?  Taking a long time?  How can it heal together with all that packing material in it?  

I would be lost without this site!  Thanks for all the help!

julianna51

Just home from the hospital yesterday.   Phase 1 surgery was June 12th and I had the full week in the hospital.  Ha, before I thought I'm so tough I'd be getting out by Sunday.....this surgery kicked my behind.  Bilateral DIEP only, and surgery was over 12 hours as they had a difficult time on the right side which probably took about 7 hours.  Had to have 2 units of blood.    As much as I had prepared myself mentally for this....I needed to double that...it was that difficult for me.   Now that I'm a full week out I am feeling much better although I developed the same rash I had last year after my BMX so I am itching all over.   I am getting around well enough and not too anxious to get out in the world espcially as it has been over 110 here lately. My daughter came in yesterday to help me get home and helped me today.   Tonight I have a good friend coming in to stay a week with me.   No regrets, I love the soft naturalness I have again and although right now I have a very funny looking body I know that will improve day by day until I am once again standing up straight and I get rid of some of this bloat from surgery.

cmbear

Tjp, wish I could help you, I'm still fresh from surgery so I'm not sure how this will all turn out. I hope someone can help you. Julianna, sorry you had such a rough surgery. Lets hope your recovery is much smoother. Here's to standing straight and being belly bloat free!!

bdavis

TJP.. I had my surgery in July... a month later I needed the right side redone, and at that time, I asked my PS about how hard my left side was.. he said it was fine... 3 months later I had stage II and he "broke it up"... It was still quite firm (about a third of the breast).. so now at 11 months post surgery, it has softened a lot.. and yes, some has reabsorbed I am sure.. but not all... so I will have a stage IIb for fat grafting next Jan.

jenlee

Julianna151, I was already bloated when I went into surgery as chemo had left my entire body really swollen with fluid retention. After my Diep, I felt huge, hands, feet, and of course my entire torso. It felt like there was a pillow of water on my lower back above my butt. They gave me Lasik and it started helping after just a few days. For the most part, the only major swelling left is on my lower abdomen, below my Diep incision. Sorry that things were so difficult. Wishing you a smooth recovery!

Irina777

Hi

I am 10 days post op from my immediate/delaid DIEP. Just wanted to share my experience since it was some different from the most mx/diep approach. I had my skin sparing DMX on Tuesday, June 5. Outpatient surgery, 3 hours of anesthisia, was in hospital overnight. No complications from anesthesia, pain well controlled with meds. Came home with 2 drains, that were producing about 60-65cc for first 3 days, then less and less each day, on June 10 it was 25 cc. Thursday, June 7 got my bs called and told me that she got final pathology - only one node out of 11 taken was positive, only one tumor 2.5 cm, all clear margins. So, I will not need rads and can go ahead with diep surgery that was scheduled for June 11. Friday, June 8 went to see my PS team for skin check up. All was fine, minimal bruising, no sign of infection, etc. Monday, June 11, 7:30 am - DIEP surgery. 7 hours of anesthesia, 3 hours in ICU, in private room by 7pm. The first night was the hardest night in my life. Morfin pump need to be pressed very 10 min (otherwise pain was not bearable), hourly check ups, exostion, nausea, etc. Next day, by 10 am was allowed to have water and oral meds!!! From that point all started to get better little by little. Still hourly check ups all day and night, but nurses and techs are so nise and gentle, so it's not too bad. Next day, after PS NP check, check ups every 2 hours, so got some sleep and felt much better by the afternoon. At 3 pm physical therapist came and got me out of bed to sit in the chair for an hour. After they put me back to the bed, I felt very weird thing in my left breast, like some liquid was moving back and force with every breath, in little wile it become painful. Several people checked on me, my PS was called and I was put back to bed rest and hourly check up. In 24 hours all was ok. Next couple of days was uneventful, regular check ups, walks in the hospital hallways, etc. Sunday morning was supposed to be discharged, but had to have BM. Got big problem with constipation, never had that before, so it was the second hardest day in my life. By the time I got some relief it was Sunday afternoon, I was absolutely exosted, so staid in the hospital extra night. Monday morning PS's NP came and said that they will remove all 4 drains I had. My body was able to absorbe all the fluids by that time, it was in a full 'recovery mode' since my first surgery on the 5th. It was so great not to deal with drains at home. Was home by 1pm on Monday. Today is the third day at home and I feel fine. Every day is tiny little bit better and easier.

My dh was with me in the hospital all the time, we've been married for 27 years, but I never new he has so much patience and such a great nursing sence. I couldn't do it without him. The greatest thing we did before surgery is renting electrical recliner/power lift chair. It's a life saver. With memory foam mattress we put on it, it's very comfortable to sleep at night. With the push of the button I am able to change positions and it practically stands you up when you need to get up.

I want to say thank you all for sharing information and experiences. This site was and is a great help to me. Wishing everyone good lick for ladies with future surgeries and uncomplicated and smooth recovery to those on the other side.

mags20487

Hi Irina777--where did you have your surgery done?  i am from Melbourne and considering traveling out of state for the procedure.  Just curious who you used in Orlando for the surgery.

Maggie 

jenlee

Irina, I couldn't agree with you more about the recliner!!! The one I rented is comfy on it's own.  I often sleep with a soft eyeshade and earplufs anyway, so the recliner is like being in a cocoon...I can sleep for about ten to twelve hours straight in it!  I normally sleep face down and on the recliner, I don't have to worry about turning over!  Makes me sooo happy since I'm not usually a good sleeper.  BTW, they say the chairs are sanitized (we checked it out and smelled it when it was deilvered and it seemed fine) but I put a fitted sheet over it and tuck it in all over, just to be sure, changing the sheet every few days. 

cmbear

Not to jump in for Irina, but she and I had the same surgeon, Dr. Richard Klein of MD Anderson/ORMC. He partners with Dr. Lee, and they are the only two that do the DIEP surgery in Orlando. I chose to stay local for a few reasons, mainly cause I just didn't want to travel. I had my TX at MD/Orlando so I am comfortable with the facility and the staff. I'm 17 days out and so far no problems. PM if you have any questions.

mags20487

good to know cmbear...maybe I will do a consult with Dr Klein as well...cannot have too many options

Maggie

Irina777

Mags20487 please feel free to PM me also if you have any questions.

mags20487

thanks ladies...right now I am considering traveling to NOLA just so I can get the lymph node transfer along with the DIEP  My LE is hard to control and I would love some relief!!

Maggie

bdavis

Maggie.. if you do, you will love them.

julianna51

For those of you that have already gone through your DIEP surgery, did you have any seeping from your breast flaps after?   I'm having a yellowish/clear liquid dripping/seeping on my left flap.   Not a lot but it is there.  I called my PS office twice yesterday and they are not concerned unless it turns more orange and puss like.   I just want to stay up on everything.   My follow-up appt is on Monday.   I've been running just a little bit of a low grade fever and I'm still dealing with the rash which makes it hard to tell if anywhere is really red...since I am red all over from the rash.

Today, I feel more like myself than I have since before surgery.   Off the pain meds for over 24-hours now and I am sure that is part of it.  I really don't have much pain except every now and then have a muscle spasm that can take my breath away.

Carol65

I've been lurking ever since my diagnosis.  I had Stage IIIA IDC with a large tumor (3.5 cm); however only 1.8 cms were IDC, the remaining being DCIS and LCIS.  Nodes were clear, but there was one cancerous lymph node in breast tail.  As a result, after chem and mastectomy, I had radiation (finished 8/11). I had reonstruction with a gummby bear (4/12), and I hate it- it's hard and immovable.  So, I now I want a DIEP flap with a breast fashioned out of my own tissue.  I live in Bucks County, near Philadelphia.  Does anyone know a micrsurgeon nearby who does a scan beforehand to see if I am a candidate for a DIEP, and who will not change to a TRAM?  I've learned so much from this site, including don't sign a consent form that says the surgeons will turn to a TRAM flap if they have to.   I'm afraid my current PS (Babak Mehrara at Sloan) will want me to do this.  I am willing to travel if I have to.  Even though I haven't posted much, thanks to all of you who have given me so much information that really, really helped me through this ordeal.

rtnyc

julianna: I had some leaking in the hosptial but not afterwards. There's not much that gets the doctors worried!!! If they are not worried don't be, you have other things to worry about!



Carol65: I am in NYC and workig with Dr. Carlin Vicery and Dr. Leo Keenan, they are a team. Very happy with them. my consultation was 2 hours long with full explaination of what my options were and the details of each. I am 7 weeks out of surgery and the care is top notch. office # 212.288.9800. If you want to head to NYC well worth a consultation.

Good luck, Robbin

Snobird

Carol65 - My PS was Dr. Joshua Levine (diepflap.com). Can't say enough good about him and his staff as well as my BS, Dr. Rachael Wellner. He is a pioneer in flap surgical technique. I had BMX/DIEP stage 1 in Nov 2010 and stage 2 in Dec 2011. I am super pleased with the results as well as the care I received. They are located in NYC.

sadie5254

Cookie:  Yep I had the reduction five weeks ago.  I thought it was a bit rough the first couple days but I already knew the worst was over.  The pain under my arm where the incision was became pretty painful.  I kept a bra on all the time and worried about the skin opening up.  But all was good.  I think I'm safe now at five weeks. All the glue is gone and I'm left with a little strange scar in the cleavage area and a small blister on the breast.  I showed him those things at my 11 day checkup and he didn't seem concerned.  I did actually think this was a bit more painful that the diep and was told it was because the nerves are intact.  At any rate, I took my pills when I needed them.  As for the results, I have to say I'm pretty happy.  Actually this new breast is a little firmer and since the nipple was left on, it's pretty normal looking.  Already the scar around the areola has faded.  I think it's a bit smaller than the reconstructed breast, but as I was told, once I am dressed, no one can tell.  Again, I'm pretty satisfied.  In fact, if I didn't look in the mirror or didn't have a twinge of pain, I sometimes don't even remember.  Let me know how you're doing.

bdavis

Julianna... I had leaking, which turned into more leaking and the incision opening up. Ultimately, so much had leaked and the incision was so big, I had to have a wound surgery and have that side done over... so just stay on top of it, use compression and keep it dry.

Carol... I live in NJ (not far from Bucks Co) and I traveled to New Orleans. I had gone to NYC and had a consult, but in the end, chose to leave the area. There are no doctors near you or me that are good enough (experienced enough with DIEP) and I actually didn't have enough fat for a DIEP and needed more harvestable areas (had GAP and DIEP)... and since I would need to do some travel even to get to NYC or Philley, where there are doctors who do DIEP, I figured I might as well go to the most experienced in NOLA... and the doctors in NY and Philley don't do stacked DIEP... The NYC doctor said he could make my belly very tight and make me breasts because he would not remove all the breast fat... huh?? Nope... I wanted it all out. So I felt more comfortable going to NOLA where they assured me all breast tissue and fat would come out (there is no way to separate breast tissue from breast fat). Check out www.breastcenter.com

lauramc

Hi Maggie

I live in Orlando and had my Diep performed at MD Anderson with Dr. Klein. I am 1 1/2 years out and had multiple fat grafting, mainly because I didn't have a lot of fat to work with for 2 breasts. Just had my nipples done a few months ago. I am extremely pleased with the team there.

Laura

Chris13

Hi Carol,

I had my DIEP done my Dr. Serletti, who is the head of U. Penn plastic surgery in Philly, and who is a pioneer of the flap procedure. Check him out...he (and his team) have done literally hundreds and hundreds of the flap procedures. I am very pleased with mine, 7 weeks out. I had a lift on the other non cancer side, the belly tuck, and have matching breasts, which is amazing considering. Except for the scars and lack of nipple, you would not know I have a foob.

He has never had a flap fail. I realize that is not only the skill of surgeon, as other factors are individual to patients, but that was a major consideration in my choice.

 BTW, having learned from this board, I asked him prior to surgery if there was a chance when they got in there that they would do anything but DIEP and he emphaticaly said no. That could be because I had so much belly fat to work with! I also asked him if he would do a lift, and he agreed readily...maybe he would have waited for stage 2 otherwise. Depending how things might change and my MX scar heals, I am not sure what would be necessary for stage 2 other than the nipple creation. (I do have some lumps that he said was not necrosis.)

Good luck with your choice.

 

Zgirl66

Have any of you worked with Dr Fix at UAB or Dr Dress in Fort Walton Beach, FL?

Any recommendations for NOLA? Heard it was good center but not sure which docs... Still recovering from rad but trying to get a short list.

Zgirl66

Have any of you worked with Dr Fix at UAB or Dr Dress in Fort Walton Beach, FL?

Any recommendations for NOLA? Heard it was good center but not sure which docs... Still recovering from rad but trying to get a short list.

jenlee

Warning, long post:

Another glowing recommendation for NOLA from me. I live in Orange County, CA, land of plastic surgery. The top doc for flap procedures in OC turned me away for a Diep, said I had insufficient belly fat for two breasts. He said even if i had enough, I was too weak from my intensive chemo to have a 14 to 16 hour surgery, so he offered one Diep breast, with the thought of me returning at a later date for a hip flap or implant in the other breast. Same thing with the best at UCLA.

Just by looking at my emailed photos, Dr Sullivan at Nola was convinced I had enough for two "B" sized breasts (I wanted to go down a size). Since the other docs in my area were adamant that it couldn't be done with my physique, I was terrified that I'd never stand upright or feel comfortable again. But I took Dr Sullivan's word for it and placed my fate in his hands. He was also to reduce the size of my areolas to match my new perky "B" sized breasts (i was previously a full and slightly saggy "C." ) After surgery, my body was hunched over in an L-shape. I second-guessed my decision and thought I'd ruined my body by allowing this guy to do what the others told me couldn't be done. So I'm amazed that with very little effort (i barely followed their recommendations to walk a lot because i don't like to walk in my neighborhood with a wig, no brows and lashes, etc., so I did just walking around the house and minimal stepping on the Wii fit). I'm standing up at about 95% upright, just 2.5 weeks out of surgery. I'm feeling so good that I can't wait to start working out as soon as I'm allowed, would be at the gym tomorrow if guidelines permitted. My experience at Nola was amazing. I believe it's one of the few hospitals in the world dedicated to breast reconstruction, almost entirely flap procedures. Women from all over the U.S. and abroad travel there. Unlike many other PS, they don't do faces, augmentations, peels, fillers, etc. Breast reconstruction is all these surgeons do all week, every week. They are willing to take on the most complicated of cases: failed flaps, radiation burns, terribly failed TE's and implants, fixing the most complex of failed cases of other surgeons. They do stacked (I think hip and tummy) for those who are truly too thin for other procedures. My total time under anesthesia was about half the time quoted to me by other docs for BMX and immediate DIEP - this was an important factor to me as I was a physical wreck from completing TAC x 8 chemo just weeks before. The facility and entire staff are incredible. The hospital is small, quiet, clean, and quite nice with compassionate nurses who, of course, only work with reconstructive breast patients. They make everything so convenient and everyone is treated like a V.I.P. A car service is at your beck and call from the time your plane lands until you depart. The limos will take you from the hospital to the pharmacy on the way to your hotel. They even took us out to a suburban mall because i decided the night before my proceedure that I wanted to go the Apple store and get an iPad. They provided round trip airport transportation for my husband, then for my sister, and again for my husband's return to escort me home. They have negotiated discount rates at area hotels for once you're discharged. We stayed at the Homewood Suites because I wanted a separate room for my sister to be able to hang out while I rested during the day; but there are other more upscale hotels on the list. You and your guests order your meals each day in the hospital from a menu, but they'll make pretty much make whatever you want and accommodated me with vegetarian meals. There are murphy beds in each room so your companion can stay over with you. Since it's a private hospital, they're not rigid about visiting hours; my sister showed up at night and they made sure she got settled in to my room. The insurance dept. is amazing and I never once had to speak to my insurance company, they did it all. I have read multiple anecdotes on the NOLA thread of how their insurance department is able to negotiate with even the most difficult of insurance companies, they can make miracles happen. They have certain days set aside for patients with immediate timing issues due to various stages in cancer treatment and squeezed me in about three weeks from when I first contacted them; they even offered me a spot for the very next week after I called but I needed more time to things more organized on the homefront.
Now when I look down at my breasts in a low cut tank top or other shirt, I see similar cleavage to what I had before and it's real. No artificial things like TE's or implants in my body, no fills for the next month or two, etc. I can see that my scars aren't that bad and are already fading and my Diep incision is hidden below my bikini undies. My breasts are a little sore, but I don't even feel like I've had a mastectomy, not physically and none of the psychological trauma. The main challenge was being away from my eight year old daughter, but my husband convinced me that if this was my best option, then with the help of friends, my daughter would survive, and she did, actually had fun staying with friends. In my opinion, any inconvenience of travel is far outweighed by the quality of the experience and end result. Perhaps this info will help some of you in your decision making.

bdavis

Jenifer.... Love reading your positive experience.. It wasn't that long ago that you were just starting to investigate your options... I and others promised you you would not regret this decision, and I am so happy you can pay it forward.

fredntan

I decided i am only waiting the minimum 6 months for my diep. That puts me in october. Come on fall!



Dreamed the other night i had breasts. Just want this damned TE out. Called my insurance and they dont seem to use the nola docs, so no use faxing my stuff in.



Looks like hubby getting new breasts for our 25 anniversary

Janetanned

Carol - I highly recommend Dr. Serletti and his team from the Hospital of the University of Penn.  I had a BMX followed by immediate DIEP reconstruction on 11/10/11.  Dr. Stephen Kovach was my PS.  I have to say that my care at HUP was outstanding.  Every one was incredibly professional and caring.  While under their care, I had phone calls returned immediately and would be seen by the DR whenever I had a problem or concern.  Dr Kovach was very patient with me shortly after surgery when I was concerned about the swelling in my torso.  He reassured me that it would subside and my breasts would look good.  He was right!  I'm very pleased with his work.  I was particularly impressed by how my surgeon, plastic surgeon, MO and RO keep in touch and treat me as part of a team.  They know each other well and respect each other's work.  I will have stage 2 in December. 

bdavis

Fran... if you want to go to NOLA you will need to contact them and let them contact your insurance company.> ALL insurance will say they don't use them... But the NOLA insurance team can make things happen.

jenlee

fredntan, bdavis is right, the NOLA insurance team can make things happen.  I never called my insurance company because for some reason, the people I end up talking to almost NEVER give me the correct information.  A local surgeon's office told me to figure it all out with the insurance company. NOLA's insurance team will figure it all out for you.  I think if I had to do it myself, I would have gotten the incorrect info and give up after a few days.

Betsy, I'm amazed at how fast it all went!  The clock was ticking for me because I didn't become interested in flap procedures until the end of chemo, so I needed to decide quickly.  I was just looking at my message box and on April 23rd I first talked to one of the women on the board in SoCal and had my local consults that week.  You and I chatted on the phone on May 5th.  I was a tiny bit undecided and scheduled my lumpectomy for May 23rd (which was originally supposed to be the day I had BMX and TE's).  By the morning of my lumpectomy, I was pretty sure I was going to NOLA but had the lumpectomy anyway, just in case there was a glitch.  On June 3rd I flew to NOLA and I had my surgery on June 6th (just a month and one day after we first spoke).  I can't believe how quickly it all went once I became interested in NOLA.  The team at NOLA made it happen so quickly for me.  Thanks to you and the other NOLA women, but especially to you!

Cherrie

Fran....my insurance said it was out of network.  Jen is right, they do the work.  Mine will be covered because there is no surgeon in Michigan that does the "stacked" DIEP at this time.  They find ways to get you covered.

Also, my doctor does not balance the bill.  She will accept whatever the insurance company pays.  (Dr. Marga Massey) I will be having my surgery at a different hospital but with all the same great NOLA doctors.

 This site will be invaluable to you.  I am now preparing for my surgery in Aug. and feel like i know what I am doing thanks to all the women who post here and share their courageous stories.

 Good luck with all of your decisions.

Cherrie