DIEP 2011

I am having stage 1 stacked DIEP...how does the compression garment work with the hip drains? Seems it would hurt and be a pain as well as difficult pulling it up and down?

Hi, I had those after my BMX. Compared to another brand  I had -- which I will try to hunt down -- they had some limitations. The pouches are rather small -- it would be hard to fit more than one drain bulb in each -- tho you could hang several pouches from the belt. They unravelled after a while, but I suppose they dont need to last all that long. You cannot hand wash them and hang them to dry as they are very thick terry and would take forever. My other brand has bigger pouches and is made out of rip-stop nylon. Every day I would just wear them in the shower  and  kind of wash them and rinse them while I was in. The water runs through them and they dont fill up. After my shower I would switch to a clean, dry set and hang the wet ones up to dry.  But pouches seemed much better to me than pinning the drains to my clothes -- I was afraid I'd forget about them and end up tugging on them if they were pinned.

Hi Everyone, Looking for some advise, after my lumpectomy on 4/13 was advised I would need mx (biopsy done on questionable area turned out to be another tumor .6) bs took out 2 lymph nodes both had cancer ,largest area was 5mm.  BS says at time of mx will remove more lymph nodes.  MO today says will def need chemo & radiation if 4 or more nodes.  I want to do diep and have tentative appt with Dr. Allen(nyc) for 5/24th.  MO feels that would put me too far out (if I have complications etc) to start chemo. So he suggests that I do chemo 1st and after I'm done to do diep.  So I asked him ,"won't that affect lymph nodes?".  He claims that it def could and then making the radiation decision would be a "grey area"...so I called down to NOLA and should hear back from them tomorrow to see if they could do it sooner? My question I guess is do I put vanity 1st or my health...I just feel like I'm going to cave in and do the TE with implants because I really want to have the other lymph nodes chkd out b4 chemo...ugh  well MO set me up for CT & bone scan on friday, so at least I will have those tests done....any suggestions????? oh and can I do radiation before or after diep??

scubacat:That is great! Once again, you can be a trail blazer and can share your experience so we know what to expect. I saw my PS Monday and he said they take more fat than they need because some will not 'take': I imagine if too much goes away, it would be a simple procedure to put more in. My stage 2 should be sometime in July, so a little more than three months after my DIEP.

dsnydawn:I had delayed reconstruction because they coudn't get me on the calendar soon enough to do immediate, so had a skin sparing MX with a TE and DIEP about 4 1/2 months later. I didn't have chemo or rad, so I'm no help on that question. I'm sorry to hear that you need the MX after all. 

Re: compression undies & drains: My husband had to help me with my compression garment the first couple of days as it took too much effort to pull up & down. It was a bit uncomfortable with the drains but not too bad and my drains came out quickly so not too much of a problem. I just used safety pins but only had three, 6 would be challenging. It sucks when you accidentally pull on a drain or stand up and forget that you have one hanging! Ouch! 

@treesprite - you've inspired me to get on the treadmill for a little while today. I want to be in much better shape before stage 2. I mistyped yesterday and said I was 6 weeks out, but like you am 5weeks out. When are you anticipating your stage 2 to be scheduled? I just want to get all of my drainage and infection wounds cleared up before I even think about stage 2. That will also give me some more time to exercise off some of the weight I put on during chemo!



@dawn - I had delayed reconstruction, but know of someone who was in your situation and had the lymph nodes biopsied as a seperate outpatient procedure so that she would have enough pathology to make informed decisions.



@scubacat

Saw my PS this week and so far we are not talking a stage 2 unless my breast does not fall into place in a few months or I am not happy with the shape..  He assures me that with patience it will fall into a natural globe shape instead of the football shape it is now.  I trust he knows what he is talking about, then will will just do office prodeure to form the nipple and then tatoo. Now that I am allowed to wear a soft bra, I hope it will train the boob into a correct shape. Since I am not a nudist or make a living off nude dancing I will be happy just to have a good shape in a bra and bathing suit.

As far as the drains..I had 4 and I just pinned them to my t-shirt, just pinned one drain to the other so that you only have to deal with one pin on each side, pain in the arse but doable.  they gave me a wide peice of ribbon to tie aroun my neck to attach the drains to during my shower, which worked out fine.

@mspradley..I never thought of seperate lymph removal..I have to have port put in,wonder if that can be done too..will ask                                                                                                        

@ bdavis & treesprite...was thinking about TE w/temp implants but would diep after be covered or wonder if it would be considered an entire new procedure...

@ snobird..I am going to call Dr Allen's office today and see if there is any change in his schedule..or maybe dr levine...my BS in Albany gave me referral to Dr. Joseph Disa (nyc) didn't call him yet

@ carberry...how long did they give you to start your rads? Is there a standard(I also have to do chemo 8 tx every 2wks 4 months)

Thanks for all your input..just nice to have someone to bounce ideas off of and listen to what you have done...well almost 9 so will start making some calls...thanks again

@JerushaTY for the info on the pouches. I didn't know that those Marsupial pouches are very small - they don't look that small on the web site. Perhaps they would be a waste of $ if I am going to have quite a few drains and each will only hold 1 bulb - kind of pointless, IMO. If you can find the info on the nylon pouches , please let me know. If I could sew, I would make a few for myself. The nylon ones sound like a better alternative to the terry cloth ones for the simple fact that they dry faster. Someone should make pouches out of the bathing suit material that my son's board short-type bathing suits are made of - very nice, soft, durable, and dries fast.

If I end up with a lot of drains, I don't want to be pinning them all over my shirts. That would be a sight, but then again, it would be better than having them hanging down and swinging in the breeze.

mspradley: I'm waiting for the scheduler to call me back; my PS said July sometime, so about 3 1/2 months after DIEP. Don't push yourself on the treadmill! I'm going to ease slowly back into activity.



dsnydawn: My understanding is that your insurance has to cover everything related to your BC including all the reconstruction, per federal mandate. The doc's office will know. I wanted all my procedures done in the same year because I have a $5000 per year out of pocket max, but it didn't work out.

Hey ladies, I have a date!!!!!   August 3 at 7:30 a.m.  I have to be there August 2 for some pre-op stuff but then Dr. Kline will see me the final time on August 12.  That is almost two weeks that I will be away from home.  Holy cow!!  I am not sure how to break the news to my DH!

Mspradley, I am so, so, so happy to hear they take more than they need.  I am really curious about that though.  What the heck do they do with your fat between stage 1 and 2?  Stick it in the freezer and then thaw it out?  EEEEWWWWW YUCK!!!

Susan

Hey XRay, my other big news of the day is that my oncologist called with the results of my blood test from last week and I am officially post-menopausal which means I am starting Femara too.  How bad are the SEs?

I can just forget about my flanks and thighs.  There is no way I can spend $5000 on it.  I moved my surgery date up so that I can get stage 1 and 2 in this deductible year.  I hope to have stage 2 in Novemer or December. 

I love this thread.  So informative!

Susan

Xrayest, no, I thought long and hard about going to a surgeon in Orlando with MD Anderson.  It was only going to make a difference of a few hundred dollars.  I ended up with Craigie and Kline in SC.  I hope I am not making a mistake.  It would be great if we had a crystal ball, wouldn't it?

Daytona and Smyrna are pretty far south from me.  I am in the northwest panhandle in Panama City.  I hope you have a great time and we are all feeling great 8 weeks out!

Susan

Hi Ladies. I forget if I've posted here previously. If I did, I probably said the same thing. Anyway, I'm scheduled for unilateral mastectomy and immediate DIEP May 3. Less than a week away. ANd though I thought I was feeling pretty OK about things (so much helpful and reassuring info on this thread), I'm now starting to feel really anxious.

Until my SNB a few months ago, I haven't had anything more than my tonsils out at age 5. I'm 51, and aside from the damn BC, am perfectly healthy. I'm rarely, if ever, sick. The only significant time I've spent in hospital was with my 8-year-old daughter last year. Two 5-day stints in the local children's hospital.

So this is all so scary and foreign to me. I will be recovering at my mom's house (in the same village as me) and my daughter will be staying there as well (I'm a single mom). We have a hospital bed coming, since all the beds in her house are very tall. I'm worried because I've never been out of commision for more than a few days. I can't imagine not being able to move about as I'm used to. I think my daughter, who has serious developmental delays, will have a hard time understanding that she can't be as physical with me as usual.

*sigh* I've tried to prepare myself as best as I can, but I'm just feeling scared and kinds weepie, both inisual for me. 

Hi everyone,

I have been following a lot of the posts on the DIEP 2010 page, especially when there is discussion of Stage 2.  Another member mentioned posting on this page now.  My DIEP was done in December and I am scheduled for Stage 2 in early June.  I have a rather long list of questions for the PS at my appt. in 2 weeks, in preparation for the next surgery, and hope I am covering all of the important issues.  I would really appreciate it if anyone could tell me things I should be certain to ask/request.

I know that he plans on reducing and lifting my non-radiated side so it is more symmetrical to the radiated side.  I do have a good sized hardened area on the top of the radiated breast and then a cavity next to it.  Does anyone know if he can reduce the hardened area at all?  I am going to make sure he fills in the cavity some.  My breasts are rounded with very little projection, so I am hoping I won't have diffculty buying bras.  Does anyone know if there is any way to give some projection?  He will also do nipples, but I am not sure yet how he does them.  I recently heard of someone who had a skin graft to create the areola and nipples (different PS).  Are there benefits to doing nipples one way or another?

I am hoping he will lipo some of the fat above and below the abdominal scar since those areas protrude.  Actually, from under my bra to the scar sometimes feels like I am pregnant!

I hope my expectations are not too high for the surgery.  I don't know if he does it in more than two stages and so I want to tell him all of my wishes for the best results.  If anyone can suggest other things I should be certain to ask, I would appreciate it.

Thanks.

OMG I just lost the longest post!  Argh!!!   For anyone interested in nipple and areola tattoes, check out the pics on this guy's site.  I have seen his work first hand and it's amazing!   I would never have guessed that areolas and nips could make such a difference!!!   http://littlevinniestattoos.net/section/134932_Nipple_Areola_tattooing.html

 Btw, I also called PS and they said no restriction on sex.

Question:  how do they tell the difference between scar tissue on radiated side and fat necrosis?   Or is there a difference?

treesprite~ I loved your comment about loving every cell in your body and it being a work in progress.  Amen sister!  Did it hurt when they removed he hard spots?  I can't remember, was it a side that had been radiated?

X-RAYest~ I didn't find the markings to be a big deal - didn't even think twice.  Mostly I was excited about new boobs and fat gone.  I look at my PS as an artist and sculptor - I actually think it's very neat!  Glad you like the Lucy pants.  They look cute with yoga tops (which I could never wear before cuz of my pooch).

Susan ~ I can't spend $5000 either.  I'm hoping he'll do my flanks for really really cheap.  My body is still adjusting to the Femara -just trying to be patient.

charlottesmama~ you should be okay with your daughter esp. if your mom is around.  Just remember to stay on top of the pain with the meds the first week.  I can't even imagine going through BC as a single mom.  I have a  lot of respect and admiration for you guys!

updt82 ~ I'll be right behind you for stage 2 (hoping for end of June).  I've got some hard areas on outer and lower side of my radiated breast.  Keep us posted on what your PS says.

Marci~ thanks for the reminder about the vit. E.  You inspire me working out on the treadmill - I NEED to get moving!!!!! 

NotAfraid ~ crossing my fingers and toes that you don't need chemo!