DIEP 2013

sbelizabeth

KiwiMum--I was diagnosed 10/11 and was advised to wait at least six months after my rads were finished to move forward with recon.  If my surgery gets scheduled in April, that will be a year since the mx and 9 months after rads.

Did you wait almost two years to have your surgery based on the recommendations of your doctors, or did things just work out that way for you?

KiwiMum

sbelizabeth - my doctor also advised I wait six months. I finished rads Nov 2011. I started talking to my PS in Feb 2012, do remember that it does take a bit of time to make up your mind regarding recon options, surgeons etc. There is also their availability that affects timing.



For me, after I saw the surgeon the first time I felt overwhelmed by the enormity of the surgery and couldn't face it. I spent 2011 being operated on, chemo'd, radiated, bald, sick, tired etc and I was finally starting to feel well. I just couldn't face it! So I didn't.



Late 2012 I was finally in a headspace where I wanted to just get on with it. It did take a few months from starting the process to surgery .... and here I am, going home today!! Yippee!!



April will come before you know it! Best wishes with your choice. I don't regret mine.

faith729

Hey everyone I have a question. Does anyone know if mastectomy has any effect on hormones? Is this a silly question I just thought of this and wondered if it could change things a bit and if anyone may have asked their surgeon?

BleuGirl

I asked if my bilateral mastectomy has anything to do with me now getting hot flashes. PS said no, breast tissue does not produce hormones.

Jeannie57

7/13 Jeannie

4my4babies

April 19th - Stage 2 NOLA

nans

Hi all,

I've been reading all your posts and want to thank you for all the great information.  It's wonderful to have a realistic idea about the procedure and recovery.  The practicle lists of things to take and what to wear are great too.

I'm having my DIEP at the West Los Angeles Kaiser on February 26.  We actually live in San Diego but the plastic surgeons here don't do DIEP only Tram Flap.  My PS here said if his wife was having this surgery he would go to the LA hospital so that's what we're doing.

I don't remember who posted that they were cleaning out closets and making list prior to surgery but I can relate.  My house has never been so organized.  I'm nervous but feel this is the right decision.  I was first scheduled for the tram flap but never felt very comfortable about it. 

I'm looking forward to hearing more about what all of you are experincing.

faith729

Haha nans that was me! My house has never been so organized either

Sounds like you are prepared for the 26th and that your in good hands at the LA hospital.

Bleugirl thanks for responding that's good news.



4my4babies forgive me I think that I must be a bit confused I thought you had already had surgery?

ElizabethInPA

I've been reading and you all have been a HUGE help in getting me to the point to make an appointment with a new PS. THANK YOU!

I have been having intense "iron bra", pinching, burning pain with my implants for almost 2 months, and it took me almost driving off the road while trying to pull my sports bra up off my implants to realize that this really was affecting me and my QOL more than I had been willing to admit.

My PS's answer was that the pain was likely caused by something I had done to strain or irritate the the scar tissue (which evidently I don't make much of) and that the weight of the 325cc implants were too heavy and causing the pain. The pain had come on gradually, so I don't think this is the answer to why I am hurting. When pressed, he said that if the pain continues my options are removing the implants completely, exchanging for smaller implants, or a TRAM flap...none of which sounded promising.

He was gracious when I brought up that I was thinking of going to Johns Hopkins to investigate the DIEP procedure.

I don't have contracture, but I do have pain. Has anyone that is going from implants to DIEP had issues with insurance?

4my4babies

Faith - I did! Stage 1 PBMX with DIEP three weeks ago. April 19th is the date for my Stage 2 revision/sculpting. Seems "funny" to already be thinking about that when I'm still recovering from Stage 1 just 3 weeks ago, but it will be here before I know it I'm sure!

PeggySull

I want to have DIEP and there is a surgeon in my area whom I 'm interviewing tomorrow. He has a very good reputation in the community.



I know it is important to gret someone very experienced with DIEP. I know that he does this procedure. How many of these do you think he should have done to be considered expert enough in DIEP.



Thanks, Peggy

ElizabethInPA

4my4babies, I am so glad you are looking forward to the next stage!

I just found a video on DIEP on ORLive, broadcast by Beth Israel in NYC. It is NOT for the faint hearted (or faint stomach-ed), but I feel so much better after watching it because I know exactly what happens in the OR, why it takes the length of time to perform the surgery, and the Deep Inferior Epigastric Perforator terms make much more sense because I have seen the vessels and what it takes to get them removed safely out of the abdomen and reattached in the chest, and how the tissue is inserted and shaped in the breast pocket.

The other great part of it is that the breast surgeon and the plastic surgeon both are sitting in and narrating the procedure with another doctor who is faciliating, as well as answering questions from viewers. It originally aired in Jan 2008.

If you can't bring yourself to watch it, the audio part of it was very helpful as well.

http://www.orlive.com/chp/videos/breast-reconstruction-deep-inferior-epigastric-perforator-full-surgical-version-?UPDATEAPP=false&CMPID=active%5Fredirect

I want to echo a question someone asked earlier...has anyone put together a list of questions to ask you PS?

I searched through the DIEP threads but haven't found one.

Many thanks,

Elizabeth

4my4babies

Hundreds. And two to three a week. Not two to three a month. Until a physician has had vasts amounts of experience, he has not had had anywhere near enough opportunity to experience all the sorts of situations and issues that may arrive. I have often seen women on here comment that their doctor has them sign a waive saying a DIEP may not be possible and he or she won't know until he gets "in there." This not necessary for someone with enough skill and experience. They know what they can do and they do it. Plus, I have read where many women have been told (myself included) things like "You're too big" or "You're too small" or "you're previous surgeries make this undoable." Yet when they go to someone more experienced (hundreds if not thousands of surgeries under their belts), they are told the exact opposite (myself included). And their surgery goes off without a hitch. You want the best. Not the best in your area. Good luck!

Sonyalee

Hi everyone, I just wanted to write a quick post and say that my surgery on Monday 2/4 went great! Surgery began at 7:30am. I was in the OR for 11 1/2 hours and in the ICU (just for the constant monitoring, standard with my PS) until Tuesday evening. I was moved to a regular room on the surgical floor Tuesday evening and able to be discharged Thursday afternoon. There is some swelling and some pain, but not unbearable. The first time they made me get up was unbelievably painful, but does get better each time you do it. Now, I'm getting around the house pretty well and able to take care of my basic needs. The hunched over walking is going to get old real quick, I have RA so that's kind of uncomfortable. However, overall I'm doing remarkably well and getting around much better than I thought I would be. I know I have fresh incisions and swelling, but I must say I think my PS did an amazing job!! I don't regret this surgery for even a minute!

heavenschild

Sonyalee - Congratulations!!!  Pamper yourself (if you can).  My sister came to stay with me and I hired someone to clean my house and it has made a world of difference.  My breast/SX/oncologist told me it would take 3 weeks to feel *normal* so be gentle with yourself.

My PS's PA said that my chest pain was due to the rib that they took out.  At times it honestly feels as if a horse kicked me in the chest.  I bought a wedge pillow ($24 with coupon at Bed,Bath & Beyond) so now at least I can nap in the big bed, but am still in the recliner to sleep at night.  My sister leaves this Thursday and we went grocery shopping 2today to get a lot of frozen stuff to cook after she is gone.  She is going to put everything in reach on my shelves for me. 

PS said no *nookie* until the suture lines heal, about 6 weeks.  My hubby took the news gracefully (thank God).

One drain out, one to go!

faith729

Sonyalee so glad to hear your doing well in recovery!

Elizabeth I 100% agree with 4my4babies a great PS should be doing at least 2 DIEP surgeries per week. I will list all the questions I asked my PS these were very helpful for me so hopefully at least a few of them will be useful to you also.



1.How many of this specific surgery do you personally perform weekly?

2. Will you have me monitored in ICU after and for how long?

3. Will my "new" breasts fluctuate in size if my weight fluctuates?

4. Will your office be coordinating all appointments necessary for me to complete prior to surgery?

5.Will I have pre op testing and scans?

6. After surgery will I still have fullness in the top portion of my stomach?

7.Is lipo part of your stage 2 process and would that be covered by insurance?

8. How will my bellybutton remain centered?

9.What is the chances that nipple reconstruction wouldn't take?

10. How soon can I begin running again? 11. Do you recommend compression wear after and do you provide a binder?

12. How big are the drains? How many will I have? And how long will they be in? 13. How long will I be out of work?

14. Will I have a visiting nurse for my drain care at home?

15. Will I be able to meet with my anesthesiologist prior to surgery?

llr010200

Sonyalee

Glad to hear things went well and you're happy thus far. Here's to continual successful recovery!

seagan

"They can rebuild her" -- anyone else have the Bionic Woman running through their heads? My husband and I joke they should at least build in some extra functionality with these new girls -- sort of "i-Boobs." Some music, apps, GPS. At least a flashlight!

My surgery is the next one on the list, on Feb 19. Mine will be a delayed reconstruction on both sides, after an mx almost exactly 2 years ago. I'm excited, nervous and a bit obsessive at this point, thinking through details and possibilities to sometimes absurd degrees (see above). My biggest concern is whether things will be especially difficult recovery-wise because I don't have much tummy fat to work with, so they'll really have to take as much of me out as they can, including (probably) some muscle, though my PS will shoot for a DIEP if it's possible. Will that mean more painful stretching, less flexibility, etc.?

On the positive side, I feel very strong going into it. I've had two years to recover from my bilateral MX and four years since radiation. I feel ready both physically and emotionally. And my 2 boys are older, so they can help much more, or at least they had better! My husband is wonderfully supportive, as he's been throughout my cancer journey, and we've got great support from family and friends. I am so grateful for all of that. I didn't qualify for FMLA (switched jobs less than a year ago), so the pressure will be on to get back to work as soon as possible, but I'm determined to give myself as much time as possible. I could also work from home part time if necessary. We'll see.

Anyone use any integrative therapies while in the hospital? Ours in Minneapolis offers some of those services, and I'll call Monday to try to line some up. I'm thinking acupuncture and possibly massage would be helpful. I'm very sensitive to pain meds and get nauseated easily. The idea of that with a huge abdominal incision makes me very nervous.

I hope I'll be as good as the other gals in this group who've been so generous and wonderful with posting after their surgeries! I can't tell you how helpful it's been to read those accounts -- thank you, thank you!

PeggySull

Faith, I'm interviewing a plastic surgeon surgeon this morning. My list of questions is way too long. Yours is just right and I'm going to use them instead! Thanks!!!



Peggy

nihahi

Seagan...we sound very similar....excited, nervous and obsessive about details. I just wish I was next on the list....have 63 more days to go. I am a MEGA delayed recon, having had mx 20 years ago, but have had implant issues ever since, so I find the "looking forward to getting these things out" helps with the nerves. I'm also wondering if it's going to be a tougher road of recovery, as my tummy doesn't seem big enough. I bet I bend over and squeeze my tummy fat together 10 times a day, to picture it as a boob. I feel like he's going to have to pull me awfully tight to "make ends meet". I'm also going in hoping for a diep, but more concerned about flap viability, so understand it may end up a tram. I refuse to go down the diep or nothing road, as nobody knows how their vessels are until the surgery is underway. Interesting tidbit I found on the nola dr. thread, even the "best surgeon in the universe" wrote he doesn't think pre-op imaging tells much about vessel suitability. The nola gals seem to have an awful lot of fat necrosis, and I don't want to go down that road by insisting on diep. 

I also have a bad history of nausea connected to anesthesia and pain meds. Love you question about alternative therapies. I look forward to hearing what you find out. Have you had a pre-op consult with anesthesia yet? If so, what have they offered as nausea minimizing alternatives?

gotoell

Congratulations Sonyalee! I am 18 days post Diep and seriously feel great. I am up and around having play dates with friends, able to drive, sleeping great, doing wonders with leggings, long sweaters and boots, feeling really good about myself again I'm trying to have an outing a day as the more I get up and around the longer my stamina is each day. I think the anasthesia fog and stamina have been the toughest things, I've been off pain pills for 5 day's. I am fighting the urge to go back to my demanding career right now. My PS put me off until March 18th but I'm going to try and negotiate that and see if I can go back part time earlier to ease back into those long days. Loving all the positive stories out there, not regretting this for a minute.

sbelizabeth

Nihahi and anyone else concerned about sparcity of abdominal fat going into their DIEP...PM me with your address, I'll have some in the mail to you!

I'm about thirty pounds over my goal, and carried twins to term many years ago.  Lots of fat and lots of skin here.  I can't wait to see my pregnancy stretch marks fashioned into new bewbs, and my weird old abdomen newly sculpted!

nihahi

I'm laughing sbeliz....can't tell you how many friends have offered too! If only!!!!! I'm thinking I'll have to stock my closet with suspenders to keep my pants up after this! 

You see your PS soon don't you? I am now 63 days and counting from surgery.!

sbelizabeth

Great visual, nihahi!  Have you always been naturally lean, or do you have to work hard at it?

PS appointment next Wednesday.  I even dreamed about having surgery last night.

nihahi

Always on the thin side, without trying to be. Grew up with nicknames like "stringbean"! I've also always been quite active, which helps my sanity, but not my metabolism! But I have told my surgeon that size doesn't matter to me, but symmetry and flap "survival" are my priorities. When I had the implant put in the mx side, 20 years ago, the surgeon put an implant also in my real boob, as he said it would help with the symmetry. They are taking out both implants (at my request) and I have told my doc that he can make me as small as he needs on the real side to give me a good match.

Boy, can I identify with the dream! Hope it was a good one!

bdavis

Nihahi... just to respond to your comment about NOLA gals having a lot of necrosis... this is not true. I know very few who have... and I am one who did... but I suspect it is because I fell shortly after surgery (passed out in the shower) and landed on my left side. So please be careful not to make a comment like that without knowing the specifics.

nihahi

Just going by postings on the Nola thread from ladies reporting they have hardness due to fat necrosis. Everyone is different, as are surgical results.

faith729

Peggysull hope you meeting went well with your PS you can never have too many questions really! My PS told me at the beginning that no question is to silly.



Im building up some muscle ( pre surgery) shoveling myself out of two feet of snow this morning ahh good old New England. Love it!

Morningsun1

Thanks for the well wishes, prayers, and positive energy from all. My nipple sparing BMX with immediate DIEP recon were successful. I came home with 4 drains a week ago and I'm drain free as of yesterday. Pain is well under control. I am very tight because I did not have a lot of extra tissue. Dr Nguyen, my ps, did a great job with what I had. Everyone who has seen the results all agree they look great. Only negative at this time is the ab incision and bellybutton incision opening up, but they are manageable.

My bs (Gretchen Ahrendt) is the best and she did a wonderful job with the nipple sparing BMX. While I was still in the hospital, she came to gave me the good news: no rad, no chemo, and no tomaxifin.

The best thing I want to say (other than successful surgery) is that my ps has kept prompt email communication with me every step of the way. When things came up, he dealt with them in between his other cases, either in person or had the home care nurse took care of them. So far I've made 3 trips to my ps's office of those two were not regularly scheduled, to take care of troublesome drains. Extra perks of having surgery in my home town.

I hope all is well for all. Tammy

KiwiMum

It's great to see everyone checking in with their updates!



I'm 9 days post Diep and doing great. My tummy is tight and I'm not yet upright, but otherwise the pain is manageable and I'm happy with the results so far. My new breast is swollen, but looking good. My tummy is oh so flat!!



I don't regret having the surgery for a second and each day gets a bit easier.



Seagan - I stopped all medications and vitamins 4 weeks before surgery on my PS's advice. That included tamoxifen. The only supplement I was allowed was high dose vitamin C in the weeks before surgery, to aid healing and my immune system. My doctor believes in complementary therapies and works with a massage therapist before and after surgery. Included in the fee was acupressure the day before surgery, acupressure again one hour before surgery, and then a third session 2 days after surgery. He firmly believes that it helps the body cope with the anesthetic and aids recovery. I was more than happy to go with the flow - every little bit helps.



Now I am back on Vit C and any other supplements I want. No Tamox until 4 wks post surgery.