DIEP 2014

LoveAMB - The first time I slept through the night I wished I hadn't because it meant I had gone too long without pain meds so then I set an alarm for during the night to keep ahead of my pain. 

It's so interesting how surgeons vary. My hospital room was apparently pretty cold, as evidenced by my husband wearing jeans and a sweater when it was in the 80s outside. To me, it felt comfortable. Also, my PS hasn't said anything about a binder, and they want me wearing the surgical bra until they tell me otherwise. Not flattering at all, but OK, I'll do it.

Bra question.  THe PS told me to start wearing one at my appt last Friday, but he didn't specify or I don't remember which kind, other then no underwire.    He has compression around the abs for at least 6 weeks, but wasn't as clear on the breasts.  Generally what do you find works.  I did have two soft stretchy sports bras I had following my reduction in March, but am reading here, that sports bras aren't good.  And right now it seems I have loose skin and a bit of an odd shape on the right (like a lip of a jar on the one side around the edge) that wasn't there before.  I'm pretty sure the shape changes are normal with this, but don't want to worsen it with the wrong bra.

THanks .

Julieho = several gals on the DIEP 2013 thread had their surgery in Boston, very successfully.  I had implants for many years and had DIEP 18 months ago. I love my warm, soft breasts.  Getting the tummy done was simply a bonus.  Lots of gals do implants first and find they have all sorts of problems.  Since you already have scar tissue, it may be really difficult to fix it by changing to a different shape implant.  There are many flap surgeries that can be done that do not require any muscle.

Many docs are doing the second stage about 4 months after the first, but that will be up to you.  You can do stage 1 in November, have a wonderful time at your daughter's wedding and have Stage 2 just after.  Although delaying it can seem like the surgery is never ending, sometimes it can be better as your body reshapes and adjusts to your reconstruction.  Stage 1 recovery is a good 6 weeks for most women as you want to give yourself time to heal inside (where it can't be seen) and outside.

If you really want to do a flap procedure, stay in shape and work hard on core exercises and squats.  Improving condition in these areas greatly benefits you in the long run.  It will be a big decision, but this surgery is definitely doable.

Hi!! New to site diagnosed 2010 IBC stage III then  2012 met to spine 6/2014 scans clean!!!!  finally planning my DIEP flap!!!  live in San Diego however consulting with PRMA  I see NOLA is highly rated but even further travel  Any suggestion/opinions /advice would be greatly appreciated!!  I found myself getting even more excited as I read everyone's posts!!  I'm scared but then remind myself of all that's happened I CAN do this right?!!

Thanks for reading

Polyanna, my thoughts are with you! I hope you are feeling better
today! It is certainly normal to go through all those emotions when
facing what all of us have been / are facing but that too shall pass. I
do believe that everything happens for a reason and all of us will get
through this happier and healthier than ever before I am glad your
kids are being helpful and I pray that their father will come around and
show some more compassion for you!

Shine, welcome to this
fabulous and very supportive group. I am so sorry you had to join but
you will find a wealth of information here. And from a DIEP flapper 2
weeks out of surgery...this surgery is very doable especially if you
have found a PS you feel comfortable with! I dropped a couple of cup
sizes since I did not have enough fat to make up full DDs (which I am
not to sad about...I always thought my breasts were too big lol) but
there is always options of combining fat from abdomen and other areas or
placing a little implant behind the fat tissue during stage 2 surgery.
(That's probably what I will have to do since I still have to go through
radiation during which the breast apparently shrinks).

Loveallmyboys,
so glad that your surgery went well and welcome to the flap side It
has been only two weeks but I don't recall too much about the time after
surgery or the hospital stay itself which is probably a good thing. So
glad you are happy with the outcome. I have to say I am also very
delighted with my outcome of my prophy breast. The other one looks a
little frankensteinish but I know it's temporary. My PS is known as a
perfectionist. I am sure she will fix the breast post radiation during
stage 2.

Lahela, ouch that sounds painful. Hope the discomfort
will subside soon! I am with you, the back-sleeping is probably the
worst for me right now. I have always been a side-sleeper and it is
really difficult to get comfortable being on the back all night long.

Trish,
thanks so much for your input and congrats on being drain free!!. I did
just what you suggested and went driving with hubby last night. I had
to move the seat all the way to the steering wheel in order not to
over-use my arms which is a little uncomfortable on the legs but doable
for short distances and fortunately the daycare is rather close. I
wished I could hold off on driving for another week but it's only two
days for this week. And I have to admit I do enjoy the peace at home without my energy filled little toddler (ever since grandma came she has become
such a brat, lol)

Donna and Meow, thank you for your words of
encouragement. I generally feel pretty good but I am getting impatient
and can't wait to get out and do all the things I used to do! Great to
hear you are doing so well!

Goldie, I am sure your niece is in
good hands. My brother and dad had to spent quite some time at hospitals
due to low bone density and broken bones when I was growing up. I
always thought hospitals and medical care in Germany were awesome. My mom is a
nurse at a hospital in Heidelberg and is pretty happy too. Continued prayers for your niece!

Kat-ski, good to hear
from you again! I hope the visit of your DD and kids will distract you
from all you have had to go through and help you in the healing process.

Julieho, so sorry to hear what you had to go through with implants!! I hope you will find a suitable option for you and you'll be able to put all this behind you very soon.  

Lovecat, welcome to this group. There is no doubt that you can do it!! I had my surgery in San Francisco which has excellent plastic surgeons. Might be an option for you?

hi everyone,

Just a quick update since my discharge from the hospital yesterday.    I have not caught up with  all the posts that I missed but I hope everyone is healing nicely.

My surgery last Friday was 8 hours, 2 hours less than expected.  My flap is doing Well, but am having issues with my original skin.    I had radiation 5 years ago and the skin is not holding up too well.    PS. Says not to worry.

Thanks to all of you, I knew pretty much what to expect, but was surprised to find my room in ICU was Super hot and I was under 2 heat lamps. For 2 days.    My PS gave me no restrictions on showers and I can move around pretty well, although my abdominal skin was pulled very tight.   I am not walking straight up at all.   I don't have much in the way of dressing and have 3 drains.   The hospital supplied the nicest little purse-type drain holders.  They are waterproof and can be sealed shut for showering.   No compression or bra.   I am pretty happy with my appearance at this time.  

Best wishes to all with upcoming surgeries.   As it has been said before, this surgery is do-able.

Rose

HI all

One day away and so much to catch up on.  First, welcome to all the new people.  Sorry you need us, but glad we are here for you. 

I am not having a lot of fun with the wet to dry dressing on my tummy.  I hope I am doing it right. 

JmB, Are your crop circles gone, or did they use them to make the nipples.  Every surgeon does it different.  I have seen the crop circles used as the nipples, and then I have been the crop circles cinched in and that is used as the skin for the nipple.  I have also seen no  crop circle surgery where they have a little extra flap of skin they use for the dopplar, and then they close it up. Dvygirl, didn't you have that done?  Or, Lemon, was it you? 

I am really tired.  I stopped by, read all your posts, everybody seems to be doing good.  Lily had her first surgery of many today.  It went well.  Thank you all for you prayers.  I know all the positive energy coming her way is helping her, and her very tired and distraught parents.

Thank you everyone who responded to my post about wanting to switch from my painful and quite frankly, ugly implants to the DIEP procedure.

It is such a hard decision to "choose" a big surgery again after going through BMX, three reconstruction surgeries due to infections and chemo…but, as so many of you have shown me it seems like having those soft, warm breast that move and have a droop again is so worth it.

Just wanted to run by a few other quick questions.  Did anyone of you have problems getting insurance to cover it after having done implants first?  As for a timeline, I know from your post that healing and all is different for each patient and each doctor/hospital even has slightly different protocols but ideally this is what I am thinking I would like.

Surgery first week of November - figure I will be "healed" and up and able to x-country ski and start normal activity again by mid-January.  Then if possible have the second phase, (which I think is nipples and any touch ups needed) in March and then hopefully I will be fully healed in terms of swelling, etc that I will look good by May which gives me a month to get in shape for my daughters wedding in June.

Does this optomistic time schedule sound doable to all of you who have been through it if there are of course no complications?

And last, I live in Vermont where this is not done so have to go out of state.  Boston is easiest for me, but I am from NYC so that is also a great option or Los Angeles is even an option depending on how long I would have to wait to fly home.  My daughter and grandson live in LA and I think of LA as the "breast job capital" of the world so thought they must have great surgeons for this.  I could stay with her to recouperate for a week of so after but wouldn't want to put her through much more than a week to 10 days after I was released from the hospital because she has a one year old and a very busy career.  I am sure my husband would fly out with me and actually be the caretaker but it is still a lot to ask of my daughter.  So, I would only choose LA if a lot of you felt hands down that was the best place to go.

Sorry I have so many questions but honestly I have continually found these boards to be the BEST source of information, support and experience than any of my doctors.  I love the docs I have but it is incredible the difference between talking to people who attend to people going through cancer, reconstruction, chemo, etc and those who actually have been through it.

I never had radiation which sounds like, from what many of you who have done that have experienced, that may be a good thing in terms of the strength of my breast skin.  

Anyway, enough - too many questions…but I look forward to your responses as always.

One last thing, I can't keep up yet with everyone's names but to the two or three who are just done surgery I send you my thoughts and prayers for a good recovery, to the woman whose DIEP was unsuccessful and woke up without her breast again I send you so much love and support, this happened to me after my infection and they hoped to put in a new TE but weren't able to.  I pray that they find a way to help you and it sounds like many women here have offered support and ideas for that.

And I have been praying for your neice - what an awful thing to experience.  Burns are about the worst but you are so right, she seems to have literally a world of prayer and support and I am sure she will make it through this.

And to those who just keep coming on giving us your experience, strength and hope - Bless You - this is why I come to the boards.  To hear from all of you and I can't tell you how much this means.

Take care,

Julie

Julieho, just be sure to do your research. There are a lot of facilities that do DIEP surgeries, but you want to find doctors that are very experienced in repairing past failed reconstruction surgeries. The ladies here will be very helpful in answering questions, and combined with independent research, you can probably come up with several places to have your surgery. Good luck!

Just reading jmb5, I have a funny story when I had the final tatooing I had a spot that scabbed over and wasn't healing that fast. I saw my dermatologist and she was telling how you have to be so careful with the nipple area and I had to remind her it is not real. We laughed. After a week or so it finally stopped scabbing and healed.

Even doctors forget they are not real.

Julie, I second finding a doc who does failed recon repair.  Insurance should cover it.  LA has great "boob job" surgeons, but many fewer great recon micro surgeons.  In NYC - look at Levine and Ahn, both trained with Robert Allen the father of these procedures.  Klein in Charleston is a great option - takes lots of insurance.  You might be expecting a bit much from your body.  Xcountry skiing at 8 weeks is a bit optimistic.  Though a Jan and March schedule is doable, you probably won't spend April getting shape for the May wedding.  Don't overcommit so you have plenty of time to heal.  I went to a major reunion event with black tie and large events at 6 weeks after stage 2. I still got tired easily.  I wore compression from under boobs to above knees - took me down a dress size so I was able to wear a figure hugging dress.

Julieho - Here's the good news. If you have a November surgery you will look good in May, and look fabulous for your daughters wedding in June. Here's the mediocre news. You may or may not hit all your recovery goals. Cross country skiing is a very ambitious sport (in my opinion) to jump into three months after surgery. You may feel great, but your body might need more time to increase it's range of motion. I'm thinking specifically of your arms. Would you be happy doing something else? May be a good idea to have your plan B in case you case your 'return to normal' proves to be more stubborn than you like. 

At three months I went back to work. My job is physical (I'm a Set Decorator for TV) and by the end of each day I was exhausted. I don't think I could have skiied. But I did go to yoga, and I did go for bike rides. I wore my regular clothes and I had some great getaway weekends that included a lot of walking. Recovery is such a very personal thing and since you are being rebuilt, it's so important to allow for slow, steady, strong healing. 

Try to be flexible with your anticipation of recovery. The big prize is the  beautiful new soft warm healthy boobs that you'll enjoy for the rest of your life. The months following your surgery will be dictated by your body, and patience often proves to be the biggest challenge. 

But as for the wedding? You'll have plenty of time to be healthy, and active, and able to show of your flat tummy, and fabulous new self.

Janet

Hello Wintersocks and welcome.

This is a great thread. Lots of different experiences. If you can't sleep read over the thread and get your questions ready for your PS.

Please let us know how it went.

Take care,

Vivian

Thanks
for explaining the dog ears. I had
assumed that they were there immediately after surgery, but couldn’t find
them. So the right end of my incision
has gotten very swollen tonight…and almost pointy. Is that the dog ear? If so, should I expect it to stay swollen or
does the swelling go down over time and just leave skin hanging?

…and
re: Bras – My PS has me wearing a surgibra now…which velcros down the
center. He said I need to wear something
without an underwire…but that also won’t push on the foobs. So, whatever sportsbra I get needs to have
the elastic enough below my girls to make sure that it doesn’t ride up and put
any pressure on them. Thanks for the
various responses. I haven’t figured out
what I am going to do yet.

trish01254 -- I’ve been
drinking a lot of water too…so I’m peeing several times each night. Since I’m only cat napping anyway, it isn’t a
big deal…it’s the getting in and out of the recliner that is more of a
hassle. Each time I move I need to
reposition and I’m finding that my back is really starting to hurt.

I am
also trying to walk … both just by moving around in the house and then also
outside as well. Walking makes me
tired…and it definitely pulls on my stomach so I need to be careful. I
haven’t even tried to take the dogs. If
they see another dog they start barking and try to run at the other dogs…which
in turn pulls on the person holding the leash…so I am letting DH and my boys
take care of that. I just wish that I
could pick them up and/or have them sit with me on the recliner. They are little … only 12ish pounds, so I am
hoping that I can get to that point soon after the last drain comes out.

MartyJ
– Thanks for the guidance on back-firing if I push to stand up straight. I will give it more time and try to be more
careful, but I am definitely struggling with that because I want to stand
straighter.

gila4936
– I agree that it is interesting that there isn’t a standard protocol for bra
and binder use among the surgeons. …and I too am setting an alarm for meds to
stay ahead of the pain.

Teacher64
– Thanks for the info on the glue…and I’m jealous that you are able to
exercise. I can’t wait to get back to
that!!

julieho
and lovecat3
-- I didn’t try the implant route but went straight to DIEP for several reasons. I can tell you that I’m only 10 days out of
surgery so I still have one of my drains and taking lots of meds, and I am
definitely on the early side of my DIEP recovery journey. But, so far I am happy that I made the
decision to have BMX and DIEP. …and if
the surgery hadn’t been available locally, I would definitely have considered
traveling for it!! …and Julie, I’m in
Boston and would be happy to share information about my surgeon and the other
surgeons who I met. Feel free to PM me
if that would be helpful.

jmb5
– Glad you are feeling better…and that you are so happy with your new
nipples. I am definitely starting to
feel more used to my crop circles…and I miss the big hugs from my hubby, sons
and friends too.

…and
LOL about your exchange student coming and boob conversations in your
house. We had an exchange student live
with us for a few weeks last fall. It
was an amazing experience!! I have two
teenage boys and they get so uncomfortable with the boob conversations. They can handle the cancer conversation, just
not the parts that refer to breasts. We
were headed to a family event about two weeks before my surgery and when we got
in the car I looked at them and said “I think it would be great if we could
talk about my breasts and my surgery for the hour we are in the car together on
our way.” You should have seen their
faces…and then I just started laughing!!
J

rose111
– I was under a heat blanket for the 20 hours I was in recovery (where they
checked my flaps every 10 minutes) and then the temp was set to 78 in my
room. They said it was to ensure that
the transplanted vasculature remained as dilated as possible which in turn
meant that the transplanted tissue would be getting the best blood supply
possible. They wouldn’t even let me put
a cool cloth behind my neck for the first few days…only on my forehead. But, I figured that if it was good for my new
girls, then I was willing to do it.

goldie4040
– I’m so glad that Lily is continuing to improve!! Yes…I definitely feel like my shoulders are
pulling forward. I had assumed that was
part of the not standing up straight. I
did try to push my shoulders back like I do when I’m trying to adjust my
posture and that was painful…but I’m only 10 days out. …and not biking because of your open would
seems smart to me not silly!! The last
thing you need is an infection!!

aff
– Thanks for the update. What are
Mepiform silicone strips and do you use them on the breast site or the
abdominal incision site? Congrats on
driving…and cardio coming in 2 weeks. I
feel like that is so far off from me…but I’m 1o days post-surgery, so maybe
they aren’t as far off as I thought. J

wintersocks
– I’m sorry that you are having to join this group…but welcome. I joined not long abo and have found a lot of
information and support from this group!!