Diep 2012

goldlining

+1 on the wedding at 4 weeks. You may still be a bit stooped over and might want to just sit and chat rather than do the chicken dance, but most people would probably not notice, unless you're the chicken-dance queen. It will help to start walking as much as you can as soon as you're up to it. Walking is a very gentle and easily adjustable rehab. I definitely used the side-handles of the treadmill for several weeks, but just getting up there and going for endurance was really helpful and also helps kill time, since your head will feel better way before your body is ready to go back to regular work. Good luck.

fredntan

Hi just peeking back into diep thread. I finished rads may 3rd. wanted to know youlls opinion on timing of my diep. 6 month minimum wait puts me in, early nov . We had crappy christmas last year. After my mastectomy last year I was scared anxious etc. I dont think I would feel that bad by christmas? I dont know how long I can make it with this TE. Its uncomfortable. My husband thinks I should wait until jan so christmas wont be messed up . why do we have to wait so long? My skin looks great around TE

Chris13

You will probably feel better with the DIEP, psychologically at least. It takes a couple weeks to heal enough to get around normally, as others have noted, but assuming you heal well, I wouldn't think Christmas celebrations would be impacted.

 I have a bit of hardness from my May 1 surgery (PS says not necrosis...so I'm waiting for next appointment to see if it disapates), but after a few weeks I didn't have any other issues. You should be fine in a month plus and feeling more positive, at least in my experience. 

willy5js5

Kathy, I am three weeks out from bilateral Diep and went to an open house and wedding reception last Saturday. I mostly sat but it was nice to socialize and visit friends and family. The 4 hr car ride may bring discomfort that you can resolve with repositioning a pillow. It felt great for me to get out and be involved in more normal activity. Great mood booster for recovering.

Cherrie

Willy that is so great to hear. I hope to get to our trailer 4 weeks out. Fingers are crossed.

RonnieKay

Chris 13....I'm 3 weeks out from bi-lat diep and I have hardness on the prophylactic side (taken at time of diep...had other mast w/TE last June and that side is very soft).  My PS says it's not a worry either, that it may take a couple of months to soften, but yours has been 2 months, so I'm a little concerned.  Did anyone notice your breasts being very warm, even 3 weeks out?  I go for a check up tomorrow (to see about fluid in my stomach area), but value any input   Going on a 4 hour trip tomorrow...thanks for the tips on fluffy pillows   I would go to a wedding too!!!!  I love that wherever I go, people are shocked that I'm up and around and looking good...puts a little spring in my step!

Lavendarlady

That's funny...I keep shocking people too. I'm just over a month out now. Back to work this week. Made my first physio appt., my abs are so weak. Got my final pathology back from my nurse navigator yesterday...they only removed one lymph node ( I guess that's all that lit up) and it was clear! So no chemo or radiation. ( I had multi focal high grade dcis) they found a small micro invasion but she said it appears that it was so small that they weren't able to test it for hormonal status. I thought she said it was .7mm. My dr will be back mid August and i will see if he says anything different. But I don't think they will offer me tamoxifen or another drug...I really wouldn't want to take it anyways if given the choice. So I feel like yesterday was my new birthday but still hard to shake the emotions I've had since before Christmas...it was a constant weight on my shoulders....I am so glad I had this surgery. Thank you to everyone for your insights and first hand experiences. This is such a wonderful sight when you are scared and trying to find out all you can.

Hoya03mom

Lavenderlady...so glad for the good lab reports!  No chemo or rads is big.  Sounds like you are doing great.  Had my pre-surgery visit yesterday.  Everyone at Yale New Haven is great.  I can see why they are named # 1 in our state by US News and World Report.  Got two camisoles that zip up and have pockets for the drains and a wonderful gift bag put together by a local woman with small pillows, and other "needed" supplies....lip gloss, pack of kleenix, fingernail file and life savors in a mini ziplock to keep under my pillow.  She said it will be hard to reach for things initially and it helps to be able to access what you need.  So glad my husband will be there and my sister is coming in on day 2 so I will have someone close.  They told me first night in intensive care then to private room Thursday morning.  The private room has a mini-fridge, a sleeper sofa for family members, tv with 2 remotes...one for me and one for them:).  All the rooms are private so that is really nice.  My biggest fear is germs.  Last time I had to share a room my roomate had a husband and father who were both had colds, and were hard of hearing and not working due to disability...so they hung out in the room all day talking VERY LOUD.  I had a broken back and once they were talking to me (we both were Kathy's) the guy grabbed my knee and shook it to get my attention...yes I am VERY glad I will have a private room!!

Gathering up all those magazines I never have the time to read for when I come home.  Doubt I will be reading much the first few days.  TIVO is loaded up with all those movies I don't have time to watch.  Now I will have time.

So glad to hear all the good news results and that a lot of people seem to be doing great a month out.  Gives me hope.

Kathy....6 days and counting

Chris13

Hi Ronnie,

No, no heat or other indication of infection. Just the lumps. Had some pain yesterday, was thinking it was from very lightly massaging the lumps and perhaps pushed them against the chest wall, which is recovering. Funny, never thought about the chest wall, but it must have been scraped pretty well during the mast. 

Today, barely a little pain and it almost seems like the lumps are softer. BTW, lab messed up sending the correct 2nd tumor specimen for the oncotyping, so I am behind another 2 weeks to treatment. Annoying, to say the least. 

Lavendarlady

Kathy it is hard to reach at first. The package sounds great...I need lozanges cause of the tickle I'd get and need to cough...which I still don't want to do! Or sneeze I did have some phlegm issues the first day or two...you must use the contraption they give you to blow in. Makes your lungs more productive I think. And I finally got to watch some movies too at home. Had never seen "meet the fockers" lol. A private room sounds so nice. We can request them here in nova scotia but even if your insurance covers one it may not be available...our hospitals are quite full...I had great care and shared a room one night then I didn't have a room mate the rest of my stay...that was luck. There were a lot of rooms around me with MRSA and c diff and the like where they would have to get gowned up....so I couldn't get out of there fast enough...you want to be as healthy as you can be going in there...

basketnut3

3 weeks since bilateral diep surgery and doing well.  I was in the hospital 5 days.  I've been off all pain meds since week 1.  My sister-in-law had me up walking the morning after surgery.  Best suggestion walk, walk, walk.  My only issue is skin neucrosis on both breasts in the middle.  The doctor removed the dead tissue Monday, it wasn't very wide or alot, now I have to pack the holes with saline and guaze 2x a day.  The doctor said it would take up atleast 6 weeks for this to heal, but I go back in 2 weeks.  Hope he closes up the holes then. 

My energy is just starting to improve.  Yesterday I went all day without a nap for the first time but made up for it by sleeping till 11am this morning.  So far the whole process was not as bad as I expected.  My belly fat is uneven, but was assuming it would be straightened out in the second surgery.

cmbear

basketnut---when you say your belly fat is uneven do you mean on the sides or top of the scar to the bottom?

Chris13

basket, how did the necrosis feel? I have lumps 3 months after that my PS said were not necrosis. I will see him again in Sept. The lumps are a bit hard, and I can move them around a bit. Hurt a little if I push my chest against something.

Lavendarlady

i can't tell if my belly fat is uneven or if it is swelling...i don't have a lot of it...but i've been eating like crazy since i got home..lol...my scars are healing really well...the belly button is slow...can i put anything on that to help dry it out? i take a shower, try to dry it off but have to wear a binder for the six weeks so it doesn't get much air....another week and a half and its off...it's like waiting for a newborn's belly button to fall off!

Hoya03mom

Lavendarlady....re the binder...what is it like?  Is it like a spanx?  Is this just on your stomach? Is it very tight?  Do you have to remove to go to the bathroom?  Ah, so many questions!!  Have you been sleeping in a lounge chair?  I just rented one for the month ($89) that I think will work great.  It has a lift function too to help you get out.  Only problem is it is leather (or maybe fake leather) and each time it goes up or down it makes a sound like you are passing gas.  But it is fairly comfortable.  I also got a fan with a remote and shopping today for lamp with a remote.

Although I have gotten a lot of "stuff" to help with the weeks ahead, in my mind as far as what is going to happen with me, I really haven't gotten past the first few days at the hospital...not the realities of what the next few weeks will be like!  Can't believe it is Wednesday.  Just booked a massage Tuesday morning (love Groupon...$39 for $125 massage) and then we will pack up and head for the hotel next to the hospital.  Since we didn't want to have to leave at 4 in the morning, it was a better option. 

Just can't wait to get on the other side and so encouraged by all the folks that have had this kind of surgery and are so pleased with the results..as well as all the good lab reports.

Kathy

goldlining

Chris13, I had some spots that were hard-ish (firm), and could hurt if I went out of my way to them into the bone. I think they correspond to where there are stitches positioning the flaps into place for shaping purposes underneat the skin. If they did not use shaping stitches, they wouldn't get the breastlike contour they want. I think scar tissue can form around those as it does along the skin incision. The skin incision hurts when you push it around too, right? I had a copy of my OR report, which is the play-by-play of the operation, and that's where I realized how much sewing was involved in the "stuffing", not just the "slipcover". When you see the surgeon next, you can ask if that's what is going on but if he's already considered necrosis and ruled it out, that's reassuring and probably it's mostly curiosity, unless the pain is really bad. I also note that they've softened up in the 7 months or so since.

fredntan

so if they are going to use some of my belly skin/fat to make these new boobs. Should I start trying to get rid of those stretch marks? Mine aren't that bad. I'v had these marks for 16 years. probably no kind of cream that would minimize. my new boobs coming 2013

sbelizabeth

Fredntan, I'm planning on DIEP early next year, and my stretch marks are from giving birth to full-term twins thirty years ago.  I don't think there's anything we can do to get rid of stretch marks.  I asked my plastic surgeon about it, and he was pretty cheerful.  "It's ok, it'll just mean your new boobs will have stretch marks," he said.  It seemed to be no big deal to him, and my belly's pretty tiger-striped from that remarkable pregnancy.

My questions are about losing weight and exercising.  Should I make a determined effort to get down to my goal weight?  That's about twenty-five pounds away, and I don't want to lose too much fat in my abdomen!  Should I strengthen my abs beforehand? 

And how much will my radiation treatment affect my surgery?  Anyone else have a DIEP after rads? 

basketnut3

Bellyfat - I am talking about how far each left and right of my scar.  I can't really say yet above the scar as I am still wearing my binder.

Neucrosis - mine, so far as I know, is dead skin.  It didn't hurt, it was like a black scab and I had smelly yellow/brownish oosie yuck.  My doctor hasn't said anything about fat neucrosis, however I do have some hard spots.  I hope to find out more when I go back in 2 weeks.

Binder - My doctor said I had to wear it for 6 weeks and it just goes around my belly very tightly.  It is not like spandax.  You do not have to take it off to go to the bathroom.  They sent me home with 2 which helps so you can wash one and wear one.

Recliner - It is very helpful.  I slept in it at first but am working my way back into my bed at about 2 1/2 weeks.  I was sleeping in a recliner thru chemo and surgery and all and was in it for 3 years.  It was very hard to get myself back in my bed, it hurt my joints...don't let it go that long.  It took anger at my husband for dumping me to get out of the recliner.

Stretch marks - yep they end up on your breasts.  I don't care at all.  Firgure if you can do something with them before, you can do something with them after if you want to.

Strengthen your abs - yes and build up your stamana. I was walking 3 miles a day and after surgery it was pushing it to go around the block afterwards.

Loosing weight. I would discuss this with your surgeon. You want enough extra to have something to work with. I don't have the answer here as I haven't reached my goal weight. Still have a ways to go and hope I don't lose everything I just did by losing weight.

bdavis

Belly fat... if its uneven above or below or to the side, that can be addressed at stage II

Necrosis (skin) - I had that. In the end, my incision opened up and leaked so much new fat out that I needed a wound surgery (which removed all the skin necrosis) and then had a stacked DIEP on that side. I had hip flaps originally. FAT necrosis.. I have that too... it can take MONTHS for it to soften. I am one year out and it has softened a lot, but not 100%, so I will see my PS in October and see what he can do to fix it.

Stretch marks... did not have them

Losing weight... I agree, talk with the doctor. I think it best to lose the weight bewteen stage I and II... strengthening your core prior to stage I is the most important if you are going to work on anything. I was fresh out of chemo so I hadn't worked on anything.

sbelizabeth

Thanks for the insight, basketnut and bdavis!

MandaLynn

Hi ladies,



I'm traveling to San Antonio in a few weeks for my delayed bilateral diep. I have several sisters in austin who can help with my care and am trying to figure things out. I feel like I want my husband with me for surgery, but he doesn't do real well with hospitals, so I'm thinking he stays home with my other two girls and i bring my 19 yr old daughter instead. My sisters can be there for moral support (they all have kids starting school that week), and then no one person has all the work.



Do you think the hospital setting is too graphic for her? Would any of you in hindsight have thought a college girl could handle it?



Also thinking my daughter can help me with flying back home.



Would really love your thoughts. Thanks!



Amanda

florafarm

MandaLynn- I'm two weeks post DIEP and I would say to count on your daughter only if she is quite mature and can be a good listener and advocate for you. You will be drugged up and won't remember a lot of what you are told, So you'll need another set of ears ans someone who can also ask questions for you. My hubby was with me and isn't really a hospital lover, but I was so glad he was there because he was very carefuL to learn how to strip my drains, change dressings, time my meds. I was just too dopey the first few days after discharge to keep track of that. My Dr. Wanted me in a wheelchair at the airport so my flaps wouldn't get bumped, so whoever travels with you will need to push you.

Ryjuem616

I just consider that the belly stretch marks that are now on my boob, just means my children (pregnancy caused stretch marks) are now closer to my heart!

Ryjuem616

I had radiation in 2008 and the DIEP just 4 weeks ago. Radiation has caused problem because that skin is "angry" (as one dr said) and had some edema. I had two lumpectomies 2008 and 2009...developed a large seroma so my flap is located more on the side of the breast. Radiation is the gift that keeps on giving... Good luck

Ryjuem616

My 16 year old has been a gem! My husband is great, but didn't spend a lot of time in the hospital. I would have liked more TLC there...I was in for 6 nights. If you have sisters who are close that's great. I was in ICU for the first 4 days after surgery and pretty out of it so visitors were not so important until I got down to the regular floor where they kind of leave you on your own. I would think a college daughter would be the perfect companion.

My surgery was right in my area, so no travel considerations.

Lavendarlady

MandaLynn,



My husband is not good in hospitals either. He did have to leave the room a few times when the needles came out. (blood thinner three times a day) but I was so glad he was there. He didn't do drains. The nurses did all that. And my mom a few times at home. I had three drains out before I left the hospital and the last one out a week later. I wouldn't say it was too graphic but it might be hard to see her mom feeling miserable ( if you happen to be feeling like that) I was from headaches and nausea. But you may be fine. So it's hard to know. But I was glad my husband was holding my hand when I was crying saying " I should have had implants...I thought a tummy tuck was a bonus..." but a few weeks later I am soooo glad I did it!

mommaof4

Please help!  I am looking for advice on a DIEP surgeon in the Chicago area.  I had exchange surgery into silicone implants in March after about 9 months of bilateral expanders.  My radiated side is just a mess, getting worse, and more painful under the arm...  I feel that I had a wonderful plastic surgeon who did the best he could with the small amount of radiated skin I had. Long story short, I am desperate to have Dr. Marga Massey do a DIEP flap surgery for me but my insurance (United Healthcare) says she is not in network and I don't think I'm going to be able to get an exception although I am fighting for one.  I'm feeling devastated!  Can anyone reccommend any other very skilled DIEP surgeons in Chicago?

mags20487

Dr Marga Massey has an office in Chicago as well as Charleston, Salt lake and New Orleans.  Check out her website and send for info. She seems amazing and loves what she does...only DIEP and Lymph node transfer. Just set my date with her in NO for November 1 tentatively.  Excited and scared all at once again.

Maggie

mommaof4

Hi maggie,  I was so badly hoping to get in with Dr Massey but am having trouble with my insurance So I was just hoping for some other Chicago referrals just in case.