DIEP 2011

the drains are hard, it is so foreign to have tubes coming out of our bodies and see our fluids and tissue draining into them, so so odd!

Sometimes men react to their fear with rejection; if they aren't  sure they can handle something, they respond with rejection or distance rather than expose a weakness (or what they perceive to be weakness); that is what I've seen with my husband anyway. My husband yelled at me after my mx and my diep (it was pretty bad!); he was really scared to have me so vulnerable and scared that he would fail me; his way of handling it was to get angry, a smoke screen; and a self-fulfilling prophecy.

I told my DH either get help with it or I couldn't face growing older with him. . . what if I have a stroke? I need to know that I can count on him no matter what. He had a few sessions with someone to help him stay connected and be in the present moment and that made a tremendous difference in my stage 2 aftercare . . wish I'd pushed it before DIEP . . . would have made a huge difference. He wasn't happy about it but he was glad after . . .he started to get 'barky' and it only took a gentle reminder and he calmed down and all was good. His counselor had him sit down with me and go over my expectations, what went well with past surgeries and what didn't go well. Helped us have a calm conversation about it. 

Our sex life has had more than its share of challenges over the years; something that I don't think most women talk about but everyone I talk to usually confesses something they have kept underwraps . . . we usually end up in a giggle fest once we open up and realize that we aren't the only ones.

Susan, it felt good to "connect" with you over this. My stage 2 is in two weeks, so I'm afraid I'm going to have to pull out those creepy nipples again. Not looking forward to it. Like you, I also felt very protective of my belly scar and found it to be very tender. I could not stand anything rubbing against it. I actually DID buy some maternity leggings at Target! They were not very expensive and have a wide, flat, stretchy band. I bought 3 pair and have gotten plenty of use out of them. (They don't stay up very well at this point, but will probably be useful after stage 2). AND, I got some maternity jeans! Ha ha -- I am well past baby-having age, and so I muttered something about "my daughter" and scooted out of the store ASAP with my nice, comfy jeans. At least at Target you don't have to talk to anyone. I also bought at Target some "granny panties" in a stretchy synthetic-- also with a wide, flat band that I used at first to hold dressings over my incision, and then just to cover it and to be higher than my pants waistbands which also felt irritating. Even now, four MONTHS out, I always wear a soft cami tucked into my pants so will not have waistband against my skin or pants directly on my tummy. (I also can not seem to tolerate having a bra-band around my chest... so maybe I am just too much of a princess!) I do suggest a trip back to Target!!

Sherry - I kept both my nipples but honestly.....it doesn't matter. They look ok. But they are not the same from the inside or the outside!  Knowing what I know now I may have had them take them rather than save them (less scaring). But it is my 'new normal' so I just go on. I also was told that the larger the nipple the more difficult it is to save - so that may be working against you also. Any way that they can save part of it? (center and some surrounding tissue?)

 Kay1963 - I defintely have a much harder time with my scars and 'frankenstein' body (as I call it also) then my husband does. However, one thing that helped me. I was at exercise class a few weeks ago (a small class - just 5 of us all friends for 20+ years) and realized that these good friends of mine really didn't understand the surgery at all. So I should them. I showed them my abdominal scar and my breasts. They were all amazed! And felt that everything was truly beautiful - I can't tell you how far that went to helping me accept this 'new normal'. I had not done any show or tell before am very glad I did. I did it more to educate them and I walked away feeling great!

Susan... yes, I am drain free... Last night, my output got to 18 and 23 for the day, so I couldn't grab those scissors fast enough...

About ab incisions, I have been wearing spanx because I need to compression for my hips (still) for another couple of weeks, and I have had no discomfort at my belly incision... Sometimes, when the waitband rolls and is laying on top of the belly button, that has been uncomfortable... Yesterday, I had on my girdle, extra pads in the butt area to extra compress the butt incision and then put form fitting pants on... It was a bit tight with all the padding, but not uncomfortable.. as  a matter of fact, the pants were snug in the legs (the girdle is kind of thick) and just fine at the waist... I suppose time will tell when I no wear spanx, but for those in pain, try the spanx (I actually bought flexees at Kohls)

Hi Ladies: I still wear mostly dresses or skirts. My jeans rub against my incision and makes it feel tender . I picked up a pencil skirt the other day and wore it to a girls day out and everyone was so impressed at the way it fits. I will do a show and tell in a heart beat to ladies. I feel blessed at having this surgery and I just want to share it.I told them that after my stage 2, I was going to disappear for a few weeks until the swelling goes down.I started sleeping in the buff after my DIEP surgery and my DH thinks that I am always ready to do the wild thing.I have to make it plain that I am just letting my incisions breath sir.I have tried a couple of things lately that has made a big difference during sex.TMI ? I shave just below the bikini line and rub on Monistat Chafing Relief Powder Gel all over my pocket book.( That is what I tell my DGD it is) It is not greasy, for the outside. I use Target brand lubricant for the inside. It is called Up and Up. Make your move ,get on top and have at it. It makes you glide. Lol. I do think that I have gotten old and horny.

Does your insurance allow you a second opinion...can you travel for surgery....contact the NOLA Drs. If you are a candidate for skin and nipple sparing MX that is worth looking into as well.

My surgeon at the Mayo Clinic told me to research my options well and that DIEP provides amazing reults. It is a bigger deal on the front end, but I did not want implants, the possible complications with rads and implants or the prospect of changing the implant in the future....

Research all of your options and get a second opinion if you are not comfortable.

It is my understanding that very few people need the TRAM as opposed to the DIEP because of the vessel issue. Do you go to a breast center? They generally have a coordinated team approach. It seems that things should be more coordinated.

I do not know about the urgency of surgery...it would seem that the oncologist would be the best person to advise on that...surely there must be protocol. I am not triple negative, but I had a 10 cm tumor and had chemo for two months prior to surgery, then surgery and then rads. I had delayed (almost 2 years)reconstruction. My PET scan was done after surgery.  I am also grade 1.

I would start a new thread in the Triple Negative Forum and ask about the urgency of surgery given your stats at this point and keep bumping it up until you get some responses...

Call the NOLA team and explain your situation and see what they say...they are the Gold Standard down there and have seen it all.

I am still in the process of my recon,( 9/2 stage 2a, 2b in Dec. )but I would say that the lymph node removal and lymphedma was more of a physical limiting issue than the DIEP at this point.

Thanks. I was just looking at the NOLA site for additional comments. I am slated to do this in Philly - they just hired the PS I'd be working with to do these, has about 100 under his belt. TRAM is pretty much out for me if they can't do a DIEP - though the lat flap seems to have as many negatives as well. I was fine with my decision until I got that call from the BS today. Threw me for a loop.

Rachel,  I am triple negative and there was urgency for my modified radical mastectomy.  That is why I ended up with a delayed reconstruction (DIEP) about 1.5 years from the mastectomy.  But I was also stage 3c not stage 1.  I had aggressive chemo and rads.

Betsy, great news on the drainlessness (we event new words here, right?) or should I say

 Betsy-drains=

I went back to the PS today.  I am over 3 months from my DIEP and have to decide if I want the redo to be an implant added to the DIEP after the necrosis is removed or use my own tissue from hips or thighs.  They will make all body parts symmetrical BUT, they would only do one buttocks at a time......I am so ready to be done with all of this.

Nowords, I would agree with you. I am almost 5 weeks post diep now and the lymph nodes are more of an issue than the abdomen. Went for simulation for rads today. Held up my arms for 40 minutes, no problem, but then the nurse had to unclench my right hand for me and help me get the arm down. It was stuck. Start rads in two weeks. Hopefully won't hurt the noob. Ps and ro seem confident with it.

Jerusha, I remembered that someone had posted that maternity leggings had been a lifesaver for them, but I couldn't remember who.  That's exactly why I started thinking about maternity jeans.  I will have to let you know how that goes!  Today, I wore a pair of pre-surgery dress pants to work.  I have lost 15 pounds since surgery so the butt and legs are big but I still can't button them.  I took a rubber band and put it around the button, through the button hole and back around the button.  I have been pulling my pants up all day and my shirt down to cover the fact that my pants are unbuttoned.  Still, that is way better than wearing a stinking dress again today.  I don't have any better luck with skirts than with pants.  My waist section is still unproportionately bigger than my butt and legs.

Betsy, YYYAAAYYYY, you are finally drain free!!!  I thought I heard you doing the happy dance last night!

Mscal, my DH wants me to hang out with you more often!  He is hoping that after I am healed I will be old and horny too!

Rachel, I had a very similar experience with my doctors.  I live in a small town and I don't think many people know a lot about DIEP reconstruction around here.  My general surgeon and oncologist were very openly opposed to me having DIEP reconstruction.  I actually left my oncologist's office in tears one afternoon because he told my husband that I was crazy to even consider it.  He told us that I would be scarred for life, my breasts would look terrible and I would be in constant pain because tummy skin is designed to cover the tummy not the breasts.  I will tell you that I went back to my desk job 12 days post surgery and I am up to walking 4 miles in just over an hour at 6 weeks out.  Other than not being able to wear pants because my middle around my belly button is still swollen I can't complaint about a single thing.  I have healed beautifully, my tummy is nice and flat and my noobs look great.  I wish you all the best and I hope your surgery and reconstruction is successful and smooth!

Joy, let us know what you decide to do.  I will be sending positive thoughts and hugs your way!

Susan

Thanks for that tip C8ndy.  I will have to check that out.

Susan

Just a thought - should I even bother considering a BMX without immediate reconstruction? I see there are a lot of women who got the DIEP later. I'm not sure if it would move my surgery up more than a week or two, though, but it might provide me with more time to shop around for doctors.

Rachel... The only way I would do that is if they put an implant in to hold the skin... a mastectomy without recon takes the skin and then you'd have to deal with that... and you don't want tissue expanders because with DIEP they don't expand the muscle.. so you would only need something to keep the skin plumped, like a place holder... BUT... then you would for sure be dragging out the process.

Isn't there a Dr Wu in Philly? Since you were looking at going to Philly anyway, maybe ask Kay who went to Penn, right Kay? And also look into Dr Chang in Baltimore. You can always have consults this week and next and at the same time send paperwork to NOLA to see what the bill would be... and have some answers before the end of next week. I know in New Orleans, they reserve Tuesdays for patients who have an active cancer, so they will have openings... you just need to figure out the finances, but they do that for you.

I actually had immediate TE implanted post UMX but then had it removed... the downside now is that part of the DIEP they will do for me is to harvest the skin since mine was compromised.  Also, I would be very wary of a PS pushing one procedure over the other - I would ask how many DIEP/SIEP procedures he's done -- should be at least 300 -- and my PS (new PS - I did not shop around the first time) says he does not do TRAM; if the DIEP is not viable, he closes you up then a new strategy is planned - also, his practice does imaging prior to the procedure to identify the viable perforators... My next PS appt is a week from Thursday - this Thursday is my new breast surgeon (my old one left the state two weeks after my UMX) to decide whether to remove the other breast when I do the DIEP... I am ready - took a bit of time to get ready b/c I was in surgery overload... ugh. And now, finally healed, albeit lumpy, I am ready for another surgery...