Diep 2012

Thanks, all ... It has been a long slog. I'm hoping it will be a stroll in the sunshine for a while! The loss of my sister hit me the hardest - 3 days before my Stage II surgery.



I actually listed it all off to illustrate that other stressors in your life might lengthen your healing process. My stressors were probably unusually intense and long-lasting, but I do think they have a good deal to do with why I remained so tired for so long.



As a two-timer, I really gave no real thought to keeping the "good" breast. As I explained to the surgeons and my onc, "I understand they are separate countries. They have no contiguous border, they do not have trade or diplomatic relations, they don't even speak the same language. However, with bad boobie gone, who knows what good boobie might decide to get up to. Off with them both." I never reconsidered, and I have no regrets now.



The very worst part of it for me was my bad reaction to the narcotic pain meds. Had I had more control over them in the hospital, my QOL would have been infinitely better. Once I got home and went to Tylenol, I felt much, much better.



Good luck to those facing surgeries, and remember to be good to yourselves. Every person heals at his or her own pace.



L

first post for me in this thread...thank you all for great information.  wow so many different experiences yet the same surgery. I'm so nerveous, 4 weeks, 6 week, stage 2, stage 3  OMG!  I must have zoned out at the PS office. I told my boss and HR I'd be out 4 weeks but we'll see.  Humm...I guess more. I'm having Bilateral mastectomy with DIEP reconstruction all together April 23, they say 8-12 hr surgery, in ICU 2/3 days, in hospital surgerical fl 3/4 days, then home w/drains, drains could come out within 2 weeks at that time tweak some cosmetic things, is that stage 2?  then stage 3 is nip's and tatoo? when is that?  This certainly does not sound like 4 weeks out of commission. Oh my!!  Help please. Am I thinking about this correctly. So when do you feel ok to have a normal life? look like you haven't had anything done? How in the world do you go back to work in sweat pants????  Help.

Hi rtnyc I was certainly able to do stuff in a couple of weeks, but it was entirely on my own terms as I felt able. I couldn't have done things on anybody else's schedule. It was tiring and a large factor, I think, is the anaesthesia. It fogged my head far longer than the surgery bothered my body. My body could drive but there's no way my head would have made safe decisions in city traffic before 2 months. All but one drain was removed when I left hospital after 5 nights, and the last one came out after 2 days at home. I wore cardigans and yoga pants when I wasn't in PJs at first. I probably put jeans on in 3-4 weeks out. My OR date was 10 days before Xmas and other than moving feebly, and being stooped over, the extended family wouldn't have known the reason without being told. They might have thought I had a flu or something.

That said, I think 4 weeks is too optimistic. My PS predicts 6-8 weeks. I could not straighten into an upright position for over five weeks. At six weeks I did feel pretty good (considering the circumstances) most of the time, travelled cross country and ran a half marathon quite slowly but felt fine. My lifting restrictions ended at 6 or 8 weeks (shhh don't tell my husband.) My HR department still considers me "off" over three months because they have not managed to speak to the surgeon on the phone to confirm my return to work. I went back to work 5 weeks ago because it was stupid to be off, and am daily incurring the wrath of HR. I am working 60-hour weeks now (for 35 hour salary, stupid me, even stupider for doing it when HR considers me "off sick").

People know I had a substitute doing my work for a while but, looking at me, I think some of them think maybe they've misunderstood because I am standing there with boobs on looking much the same as before except maybe like I lost weight because of flat tummy and smaller chest (as I wanted). I wear the same size clothing but it fits better.

The touch up surgery or stage 2 could be 4-6 months down the line, or longer if you want. I haven't heard of that being done as early as when the drains come out. You want to see how the flaps settle in and shape up. I think I will aim to do it over the Xmas exam break or even next summer rather than at the earliest opportunity which would mess up my work more. I haven't done that but from lurking on the DIEP Stage II thread, it seems to be about a 2-week recovery from that.

The nervousness is for many people the worst part. If you found a little "vitamin X" or valium to help you, you wouldn't be the first one. As soon as I rolled into the OR, I never needed another. 

rtnyc, once you have the drains removed and you can walk upright again, you will be able to look normal on the outside. You don't have to wear sweats when you go out. I wore loose sundresses or tank dresses, ankle-length yoga pants, or pull-on jeans, all comfortable on the waist and abdomen while I healed. My sequence of events went like this:  BMX w/immediate DIEP> 3 months> Stage 2 w/nipples> 3 months> Stage 2B w/fat grafting & corrections> 2 months> tattoos. Without unforeseen complications, 4 weeks recovery post DIEP might be enough, even less after Stage 2. Reading this thread can make anyone freak but my guess is that there are more who don't have complications, and therefore, don't have much to post about so you don't read about all the cases that went smoothly, like clockwork. I don't know what kind of work you do but you shouldn't push it. Your body needs rest and no stress in order to recover properly.

Thanks Raebob, Snobird, Goldlining, c8ndygr1 for helping to make me feel more confident about DIEP.  My imagnation is my worst enemy and if I can control my anxious, chatty mind I'll make it through the next six months. Good to know that I'm not alone in this nervousness, and I really love the use of the word 'manageable' Snobird. The last eight months have actually been mangeable too, and last summer, when this all started out, I never would have dreamed about being able to saythat. 

I will probably have a billion more questions and doubts, but for now I hope everyone had a great weekend. 

thank you bdavis, goldlining, c8ndygrl and reading mama for your responses.  it's all just terrifying the not really knowing part.  I'm the type of person who takes the bigger picture and breaks it down into smaller parts to get everything done and plan. Here I guess it's wait and see, wait to see how you feel, wait to see how you heal, results etc. and then move on.  The only part which still gets to me is the no nipple part, so not natural. And then reconstruct nipple; fake nipple again not natural and the tatoo...entire thing so not natural or normal; weird.  But I guess it's better than the alternative of not being alive or having a choice, so I'll  and move on just go through the process. I think overall I've been calm, I've handled one step at a time and moved to the next thing. Ok I'm babbleing so I'll move on now.  Thanks again to all and good luck to those who have surgery schedule for this week, thinking of you and sending well wishes your way!

I just had my first stage of DIEP on January 9, 2012.  It took me awhile to heal and get back on my feet.  I ended up with an infection and had to have a second abdominal surgery on February 14.  I am now waiting for stage two which is to take place in June.  I have had some ups and downs with this but have a great oncologist that really encourages me.  I thought I would be back to work in 4-6 weeks but it was actually about 8 and even then I went back in baby steps working half days and then 3 days a week until I could go back fulltime.   My PS is great but very busy.  I also have some lumpiness in my right breast (noncancerous side)  that is concerning me.  I have been on some forums of other women with same issue and it seems that it is common.  Something called fat necrosis.  Good luck to all and my prayers are with you. 

Anyone else experience 'phantom' nipple response to the cold?

Janet_M- I think in some ways that I was lucky because my hospital won't do recon while you are in active treatment. I had an immediate uni MX on the cancer side when I was first diagnosed and then had six months of chemo. As soon as I finished chemo, I started the bisphosphonates clinical trial and was getting Zometa once a month for six months. So it was almost like I was still in treatment in my mind. When the Zometa infusions dropped to every three months, it was such a relief to get such a long break from going to the cancer center that I wasn't even thinking about recon. I was just trying to live my life again without cancer being in the forefront.

It was two years later, September of last year, before I called to make the appt with the PS to discuss recon. That gave me three years total to really research and decide what recon I wanted. I knew from day one that I didn't want implants. It's a personal decision and they are great for some people, but not for me. For many reasons, if that had been my only option, I wouldn't have done recon at all. I first heard about DIEP way back when I was first diagnosed and started reading the boards here. I knew the first time I heard about it that it was the way I would do if I did do recon. For a year or so, I actually insisted I wasn't doing any recon at all but eventually I couldn't take being a lopsided unicorn anymore and wearing the prosthesis got to be such a hassle. I guess I always knew what surgery I was going to do. I just had to talk myself into it. My original MX at age 47 was my first ever surgery and the first time I'd been "sick"- which sounds funny to me because I never felt "sick" with BC either.

The decision to remove my healthy breast- I'm sure we have all second guessed that decision. That was one of the reasons why it took me three years to decide to do recon- I wasn't sure what I wanted to do with healthy righty. Well, I should say that I knew what I was going to do with it- it just took some time to actually do it. And I can tell you with absolute certainty that I have zero regrets about removing it now that it's gone. Once I made the final decision to remove it, I never looked back. And I can also tell you that I hardly know it's gone. My DIEP breasts look so much like my real breasts that I have to remind myself that healthy righty is new. And I've only had Stage 1. My PS did such an amazing job!

And that is way too much talking to say that yes, I second guessed my decision but once I did make the decision, I never looked back and I haven't regretted it at all. For me, the decision was exactly what I needed to do and I am so glad that I did it. Every decision that I made in my treatment was made to do the utmost that I could to prevent a recurrence and bilateral DIEP was IMO the best decision for that as well.

I wish you well. It is a hard decision to make, but we are here for you if you decide on DIEP and we have walked the path ahead of you and can lead you through it.

Just checking in...it will be 8 weeks post BMX & DIEP on Tuesday. I can't believe it's only been 8 weeks since the big surgery....11 hours in surgery, 4 days in the hospital, 4 drains pulled at 1 week, the dreaded binder was on for 6 weeks when the drains came out, and able to sleep on my sides around 6 weeks.  I'm scheduled for Stage II the end of June after the chemo is finished.  I'm starting back to work part time tomorrow, and am 2 weeks post first T/C chemo treatment. 

My noobs look great with the scars starting to fade a little.  I do have the odd sensation to cold, but of course no nips to react.  I have sensation on the tops and inside of each breast and hope to keep getting more sensation.  My tummy looks fantastic....hasn't been this flat since I was 25 before becoming a mom.  Still have an anoying tightness and numbness in the center of my abdomen that I hope will keep fading and my belly button is finally starting to not look so unhappy. 

I've been walking religiously for about 5 weeks now, up to 7 miles when I have time and the weather cooperates but usually around 4 miles and just took a spinning class this weekend.  The postop pain is a distant memory and I am so glad I made the decision to do BMX and especially the DIEP reconstruction.  The breasts giggle and feel warm and for the most part feel like my old boobs...maybe a little heavier, but definately more perky.

TexasRose,

Thanks for your response. You echo some of my own thoughts, especially when you said, 'You know what you had to so, you just had to talk yourself into it'. I had a CT scan this morning on my right side, for radiation on the nodes. By waiving radiation on both sides, it that means that my plan is in place and I'm forging ahead. And still - not totally accepting it.

I'm very glad to hear that your breasts feel much like your natural ones - that's encouraging. (It still amazes me that this surgery is possible!). My intellectual brain knows that I can adapt to a lot of different circumstances. My emotional brain is less rational, and is having a hard time saying farewell to my perfect left breast, and my not-so-perfect-anymore right one.

melster  It is a bit scary, but just remember you will be asleep.  My oncologist is such a great cheering section.  He told me that it would be rough for a little while, but that I would be so glad I did it.  My sisters both had breast cancer the year before me.  They got implants.They actually encouraged me to do the DIEP.  Don't think they are completely happy with their implants.  I wish you the best and hope all goes well.

I promised myself that I would post after the operation because the other posts were so helpful when getting ready. So, day three after an 8 hour operation things are going great. My wife had a BMX with immediate reconstruction. She struggled with her decision since nothing had been found in her left breast. I think she'll always question it (unless something should come back on the path reports.).



We checked in to the surgery center on Friday (3/30) at 6:00AM. Anesthesiologist visited and described the procedure then the BS and the PS who proceeded to draw lines all over her belly and breasts. Weird. Then they wheeled her away and the loooooonnnnnggggg wait began. I had discouraged everybody from sitting with me. I am glad they didn't listen. It was great to have company. At about 10:30 the BS came out and let me know that everything was going great. She was done with her part and the PS had begun to move tissue up. Later I received a call from the nurse who let me know that everything was moving along great. The next call said they were closing the last one and they wouldn't be out until 4:30. By 5:30, I was pacing up and down the hallway thinking the worse. Finally, just after six, the surgeon came out and told us everything went great. He explained that they were done at four but had to take X-rays for a while due to a disagreement on needle count. He assured me that all needles were removed.



I was not allowed in recovery. The PS suggested I go get dinner and meet her in ICU. I did and brought my two older kids with me (18 and 16.). It was a bit of a shock for them but in her fog of anesthesia, my wife was blowing them kisses. She looked awful. She was pale, bloated and her lip looked like she had been punched. She very slowly came back but truly was groggy for at least 24 hours. Every time they gave her pain meds, she was very nauseous and was terrified of the pain she would feel from throwing up. This went on most of the night. Her chest was not swollen like ores have described. As long as she was laying on her back, it was hard to tell there was any volume there. All I could see were the scars and the center of a different color. She didn't want to look at first.



Saturday evening they prepared her for transfer to the floor. They had a gadget that measures oxygen saturation in the flap (can't remember what it's called) and in the move it was loosened and for a whie they were concerned that there was a problem when the readings fell dramatically. A more experienced nurse reassured us that the color and the doppler showed that all was well.



Sunday was a good day. She walked for the first time. We had a lot of visitors and at one point we had eight people in the room. This was a bit too much. I went home in the evening and when I returned, she was in the middle of a major meltdown. She was exhausted and she had looked at herself for the first time. She was crying and going through a lot of what many of the women here dealt with long before the surgery. She ignored it before the surgery and it all came crashing down. A wonderful nurse came in and suggested a muscle relaxant to help her sleep.



Monday has been much better. Less visitors and better recovery. I am learning how to handle the drains when I get home. We learned that stool softeners can cause sudden changes that are hard to control which precipitated the need. For the first shower. The drains are a pain to deal with but she was a trooper. She started to feel a bit of pain so she got her Percocet (sp?). All happy now without the fuzziness of the narcotics. Pain is manageable and she went for two walks around the floor.



Thank you all who have posted. You don't know how helpful it was. Particularly those who have had it for a while and can show the newbies that there is life after DIEP. I know I missed many details so please ask and I'll try to do my best to reply.

Tammy:  So sorry you are still struggling.  I had the incision opening up, though not with this procedure, but with every C-section and hysterectomy.  We packed gauze in there for weeks and weeks.  I also had a weird rash on my breast a couple weeks ago and saw the PS, though he didn't know what it was.  After about five days, it was completely gone.  I did have some significant abdominal redness in the the hospital and it was cellulitis.  But that came with the MRSA infection, nothing you have to worry about. If it's a fluid buildup, perhaps that's an easy fix.  I hope so!

I certainly hope your bloodwork comes out okay.  I know what hard decisions you've faced.  And I can really appreciate your not thinking you can go through this all again.  I'm praying that a decision can be made and it will go smoothly this time. 

bdavis2... I did not have the big upper belly until after stage II, but at 4.5 months post stage II I still have it, but am told it can take months for it to go away. From what I understand, to do the DIEP they manipulate the abdominal muscles to get the vessels... Then those muscles need to recover and it can take a long time... Abdominal exercise can help. If mine hasn't improved by my next consult (in the fall) about 11 months post stage II, my doctor may do a plication... Another reason the upper belly can appear larger is that when they take the lower belly, it magnifies the remaining belly... and with lipo, they can only lipo surface fat, not fat that is imbedded within your body. So no guarantees that lipo would help... It is most likely muscle weakness.