DIEP 2014

Gramof2boys

I'm hoping some of you can answer a few questions. I'm having a DIEP flap with my stage 2 reconstruction. I had a bilateral GAP flap in August and my left cancer side partially failed after 7 weeks:(. They removed the flap and just let me heal. Now I'm having a DIEP on my left side. How is the recovery from that? I will also be having a tummy tuck. I had drains for my hip flap and had to wear a compression girdle after surgery, but I'm worried about abdomen hurting especially when I get up. Was it painful? I really had no pain with my previous surgeries. How long did it take to recover? Thanks!

Anonymous

I am two weeks out from stage 2 DIEP and was pretty upset after it too. I had six areas on my body lipoed and, quite frankly, was not prepared for how uncomfortable I was afterwards since, until the day of surgery, I thought they were only doing the inner thighs. I thought I'd simply be a bit saddle sore on the inner thighs, so when I realized how many additional areas were affected my mental state did a nose-dive...something that is unlike me. I really went down in the dumps and it took a mini horse-related RV trip of four days and some serious Retail Therapy to lift my spirits.

Now, I have my two sons here for Thanksgiving, which always brightens my mood and I just spent yet another few moments staring at what use to be me in the mirror. I must say that it appears I may be approaching symetry...something that was severely lacking after stage 1. I would estimate Righty to have been a 34c and Lefty to be a 36b/c. My current measurements now are 37c, but I expect that to reduce a bit since I am still swollen in areas.

Next week I go back for my post op and will hopefully learn if I will require additional stage 2 surgeries. So, though this ordeal is far from over, I take heart in the knowledge that I appear to be on the way to symetry and my former proportions.

For the life of me, I can not understand how some people would willing submit themselves to cosmetic lipo and tummy tucks......

debiann

Gram, sorry to hear your first flap failed. Its a fear I still have at 8 weeks post surgery. When can you stopping worrying about flap failure? Did you have any signs that something was going wrong?

I had the deip with the tummy tuck. The drains were the worst part. The pain on the tummy was minimal.  Sure the incision looks big, so you think it should really hurt, but they only remove fat, they are not cutting into muscle, so its not that bad. I had a hysterectomy years ago which was much more painful. The belly will just feel weird because the skin is streched so tight and you can't twist or move as normal. I'm loving the results of the tummy tuck!

Chloesmom

Seeing Dr. Rosson at Hopkins on Monday for the first time to see if I'm a candidate. Anyone have experience there? Thanks!

cathiero

Chloesmom---just want to wish you good luck on Monday. Keep us posted on how it goes.

Anonymous

I am at Hopkins....Dr.Sachs PS, Dr. Euhus BS.

dufflady1

Recently diagnosed with Invasive Ductal Adenocarcinoma. Will undergo lumpectomy on December 3rd....and wait to hear what treatment I will have, if any. Then I will plan a double mastectomy and I want the DIEP. I live in Mississippi. I am researching the surrounding areas for this procedure. Would anyone please share with me, either here or in private message what their experiences have been at UAB, Nashville with Dr. Wendel or Atlanta. I have researched and thought I was completely decided on New Orleans, but they are not in network. I can not afford them. Any help and advice would be appreciated! Thanks so much.

philomene

have you considered PRMA in San Antonio or Kline and Craigie in Charleston? Both are first rate for DIEP and take most insurance.

LAstar

Dr. Marga Massey works in New Orleans, Charleston, and Chicago. She is in-network for me and I live in Oregon.

SaltyJack

Hi ladies - well, I've been lurking here for a few days but just read the list at the beginning....and figure I should jump in officially (especially since I see somebody else scheduled for DIEP in Houston next week, too - hi Warrior50!). I finished rads in May and am scheduled for DIEP 1 on December 8. Already I've learned so much from you ladies - thanks so much! I'm of course, glad to get this next (hopefully last) big hurdle over with and cautiously optimistic since my whole BC journey has been more of an inconvenience than tragedy (thanks to lots of answered prayers!)....but a little nervous.

I'd be glad for any advice or information - thanks to you all for being there!

- and good luck, Dufflady! Hard to believe I was where you are over a year ago - hopefully your treatment will fly by!

Saltyjack

jbdayton

Saltyjack, I will be having DIEP Stage 2B on Dec. 8 in Houston at Westside Surgical Hospital.

I followed the same path as you except I was HER2 neg. You will do just fine. I had several complications along the way but am now nearing the end.

Philomene, I had my right flap partially fail with necrosis. I lost significant volume. I had fat grafting in Sept and a large volume was grafted. About 50 to 60% remained. I am having another fat grating in a little more than 1 week. My PS says he will overfill and after shrinkage should be symmetrical with the left breast. He will have increased my size by just over 1 cup size. Some have said it could take 2-4 transfers to get your desired results. I have faith you can end up with the size you want but it may take several attempts. good luck.

Luckygirl27

Hi Everyone,

I am meeting with my PS for the first time on Wednesday 12/3 to hear what is involved with each of the different reconstruction options.  I am leaning toward diep.  My concern is that due to the length of the surgery, it may be difficult to schedule the surgery for a few weeks.  This worries me because I first noticed breast skin change in August.  Went to my primary on October 16.  Mammo, u/s and biopsie soon followed.  Was diagnosed on 11/10 with IDC in both breasts!  The BS said it is a very slow growing cancer even though in one breast, there are two satelllite locations of the larger tumor.  Sounds like spreading to me.  The BS said that I could do delayed reconstruction if I want to get the cancer out.  I think I prefer to have as much of the surgery as possible the first time.  Are the breasts from diep surgery "perky" like implants?  Do they sag after a period of time?  It is so wonderful to have all of you on this website!

Anonymous

Definetly not perky like implants, and they will sag like natural breasts over time. That, for most, is the appeal of DIEP. It gives you natural breasts with no silicone, tissue expanders or other implants.

jmb5

HeidiToo, I really had a hard time emotionally after both of my stage 2 surgeries. I think it was because I was feeling like I was getting back to "normal" and then I had this other surgery, felt sore from the lipo, etc. I had a scar revision the second one, and had one drain. It was just all so depressing to feel lousy again and be in compression. It took about 4-6 weeks to get out of the emotional funk I felt.

If any of you ladies who are new to the board would like to be added to the surgery list, send me a PM with your info. and I will add you.

Evegibb

Hi Ladies,

I'm feeling a little disappointed this morning.  I have been waiting for a year and a half for a surgery date.  Every time I call, I'm told to call back at a later date for a surgery date. The last time I called in Aug and was told to call in Dec and I will be given a date between Jan-June 2015.  I just called and she told me she doesn't have a date yet and she will call me some time in March 2015 with an expected date.  I feel like I have no patience and can't wait to get this surgery process started.  I want to move on from having just one breast.  It is my understanding that the surgeon doing my surgery is very good and comes highly recommended.  I understand that's why I'm waiting so long to have this surgery, but I'm feeling pretty emotional this morning.  I was really expecting to have a date set.  Having this surgery is on my mind constantly and having a date set will help to move forward with the process. Feeling disappointed   

Janet_M

Evegibb - Have you requested to be in a wait list? I believe we have the same doctor, and I also was frustrated by the long wait time and feeling like I was in limbo. At one point I was offered a surgery that somebody had cancelled with one weeks notice. I couldn't do it - but I was happy to know I was still on the radar. Eventually I became the squeaky wheel until I got my date.

I'm sorry your going through this - and I completely understand the frustration. This too is temporary - but I hope it's resolved soon

Luckygirl27

I was hoping to have smaller breasts (I am currently a 38 D) but the BS thinks the PS will say that doing this will take multiple surgeries which I am trying to avoid. I like the idea of being natural but also want them lifted somewhat too. Yes, you can say I really do want it all! I am very anxious to have my consultation with PS this week and hope that surgery will be soon. I see there are a lot of ladies who have to wait a long period of time for a surgery date. Any advice?

SaltyJack

Luckygirl, others can probably give you alot more information than I can at this point (I'm scheduled for DIEP next week) but I decided on DIEP rather than implants for a couple of reasons (despite the much more involved surgery and longer recovery):

1) My PS won't use implants if you've had rads - he said 10-20% of ladies will have problems with implants but if you've had rads, it's more like 80-90%. Since 95% of his business is reconstructive surgery after cancer, I'm assuming he knows what he's talking about, even though I know others have had different advice/information from their doctors;

2) Implants aren't considered permanent (although many ladies don't ever have problems) - most need to be replaced after 5-10 years, while DIEP is forever (hopefully anyway);

3) DIEP, as Heidi said, isn't perky like implants but since it's your own tissue, it will sag, and change (for better or worse) if you gain or lose weight.

My PS won't do the surgery until at least 6 months after rads (so whatever skin changes have occurred will be healed or at least minimized). I finished rads in May and scheduled a consultation with him in November, with the goal of having surgery right after Thanksgiving so I could enjoy the holiday and then be pretty much recovered by Christmas. I was thrilled that he was able to schedule surgery on December 8 - but I sympathize with you ladies who have had to wait so long to schedule surgery.

I have to say that just in the few days I've been reading the posts here, I know many of you were probably laughing at my first post (saying that DIEP is the last big hurdle) - now that I read about all the follow-up surgeries. Sigh......

Thanks to you all for being here!

Saltyjack/Bev

Evegibb

Thanks Janet,

Yes, we have the same surgeon and as you know he is wonderful, hence the long wait time.  I am currently on a wait list for a date, been on this waitlist since my consultation.  Had to wait almost a year for the consultation! Thanks for the encouraging words....... I too will be the squeaky wheel!

wintersocks

Hi All, 

I am going to my pre assessment tomorrow.  The 15th is on the horizon. Thinking today 'why am I doing this? It's a choice' .   Getting wobbly!

julieho

I totally am with you on that Wintersocks. I am getting wobbly too. My surgery is in 10 days. I fly out this Sunday. And I got a yucky cold to boot. Hopefully that will be completely gone in 10 days from now.

Anyway, a lot of pre-surgery jitters and I have exactly the same thoughts - this is a choice, should I be doing this? But, in the end, next summer maybe, I will hopefully be feeling whole again, with a large abdominal scar, but with soft, warm saggy breast. That is what I am hoping.

debiann

Goodluck Julie & Wintersocks! Know that in the first few weeks you may question the decision even more because the breast may feel hard & heavy and the belly look unnatural. Be patient and you'll find its all worth it. As my bs said "it won't always feel like you have milk jugs sewn to your chest,. Lol

I'm nine weeks post and suddenly amazed how soft and smooth the breasts feel. The scars are still visable, but fading. The tightness in the belly is gone and its looking good except I can now see a little bit of dog ear that wasn't there at first. It will get fixed stage two, so no worries.

Best wishes to all with upcoming surgery.

SaltyJack

Well, ladies, I'm getting close to my surgery date (next Monday - yay!) and the questions are driving me crazy as to what to expect. I've heard about the folks who have to sleep in a recliner for weeks because they can't stand up, incisions opening back up....and really don't know how I'll be feeling a week from now. From some of the posts, it looks like I can expect to have drains (my PS said one or two) for about 10 days? He said I'll be in the hospital for 4 or 5 days and he didn't think I'd be terribly uncomfortable - said I'd have a week - or maybe two - when I didn't feel good and would sleep on my back on a couple of pillows in bed for a week from being kind of bent over.

I've started running (after 30 years!) when I started taking Arimidex (on the theory that the more I moved, the less I'd have problems with joint aches and pains). I'm only going 2-1/2 miles every other day - but I'm wondering when I'll be able to start any kind of exercise again? How about just feeling good enough to go out and run errands? How long were you on heavy pain meds (I figure that's at least how long I won't be able to drive)?

Help!? Is any of that true? What have you experienced? I'd really appreciate any insight, help or advice.

Thanks - Saltyjack/Bev

jbdayton

Bev, I hope I can help. A DIEP is a doable surgery.

Yes, you will not be able to straighten up for a few weeks, but each day you will stand up straighter. I was standing straight up again at about week 3. I did sleep in a recliner for several weeks with both my mastectomy and my flap surgeries. If you were able to sleep in your bed following your mastectomy you can probably sleep in your bed with pillows for this surgery.

Don't worry about the complications, you may not encounter them. If you do then you can worry about it. I am one who had incision problems but now it looks great.

As for pain meds. I only took hydrocodone after I got home on day 5 and only needed them for about another week if that.

As far as driving, it took me several weeks. Pain meds was not the problem, pushing the brake and turning the head to backup were my problem. Started driving comfortably at week 4.

Week three was the hardest week emotionally for me and several other ladies. You start to feel really good but get disappointed because you tire easily.

On a good note, I apparently drained fast. My drains were removed for both my DIEP and my Ruben's flap before I left the hospital on day 4.

As far as running, I don't know, but I was able to walk the Making Strides 5k 5 weeks after my DIEP with no complications and probably could have made a couple more miles. Felt great, so move as soon as you can.

I will offer a prayer for you Monday morning, my procedure doesn't start until 2:00 Monday afternoon. Mine will be an outpatient procedure.

Let us know how it goes.

edukes1002

Bev, thank you for asking your questions.  I am going in for Stage 1 on Friday am.  Trying not to freak.  Mostly successful because I think I have an awesome team and I have amazing support. 

Jbdaton, thanks for the rundown.  Please add me to your prayers and I hope I do as well as you.

Prayers and happy healing! 

SaltyJack

hey, edukes, you'll be ahead of me by 3 days and I agree, Jeannine, all the information is very helpful. What's a Ruben's flap (and dog ears that everybody keeps mentioning)? The warning about the emotional letdown after a couple of weeks is good to know - hopefully I can remember it when I start getting cranky and frustrated! Fortunately, I just have a pretty self-sufficient husband and two retired racing greyhounds (if anybody knows the breed, they're 80-pound couch potatoes - sleep all the time) to deal with at home.

I had 2 drains after my mastectomy and had them in nearly 2 weeks - I'm sure hoping I can get rid of them this time sooner than that but I don't want to even think I might get them out before I leave the hospital. That's too much to hope!

Thanks for any more information and advice....and especially prayers!

Bev

norita19

Bev,

One thing I've learned is, everyone's different! I did unilateral, right side only, and I think I had an easier recovery than most. I was able to stand up straight almost right away and never required sleeping in a recliner. I only took one tramadol once I was home, found ibuprofen to be effective enough. I was able to drive about 2 weeks out and do short errands. Had my last drain out today (3 weeks) and everything is healing well. I actually feel ready to go back to work but what's the rush? I still sleep about 10 hours a day.

SaltyJack

wow, Norita, you sound amazing - you go, girl! I sure hope I have a recovery like yours. My mastectomy was amazingly easy (well, except for whenever I think about the BS chopping off a chunk of my body, of course). I took one pain pill the first night in the hospital (mostly because my PT sister told me to, rather than risk waking up in the middle of the night). I took a couple of ibuprophen the first two days at home but that was it - except for the drains, I felt pretty much normal after a week or so. Except for pesky BC, I've always had excellent health so hopefully the next few weeks will be tolerable.... I like the idea of sleeping late and long afternoon naps, though!

jmb5

SaltyJack, after all I've been through the past year, I've decided that I am a wimp. Most of the ladies on here seemed to have less pain than I did. I had BMX with immediate DIEP. I'm not sure if having a mastectomy already will make the DIEP easier for you, but I found it to be pretty tough. I slept in my bed with pillows propping my head up, under my knees, and under both arms. You can't lay flat because your tummy is too tight. During the day, I laid on my couch (the chaise lounge of my sectional). Also had some pillows to help me be comfortable. I could not get out of bed on my own for a couple weeks. I didn't have the abdominal strength to sit up, and couldn't use my arms to push up, so my dh had to help me. It took me exactly 14 days to start feeling human again. I remember crying on day 13, telling my dh I couldn't do this anymore... I felt so bad, but on day 14 I finally turned a corner. I hear other women on here say that it wasn't that bad for them. Again, I wonder if it's because they had mastectomies first and then the DIEP after treatment. I took Percocet for a full month... 2 pills at first, and then 1. When I tried to go off, I felt lousy and my surgeons urged me to keep taking them. I was worried I'd get addicted, but thankfully I never did. I've read other posts on here that said they didn't take anything stronger than ibuprofen. Those dear ladies have a higher pain tolerance than I do. Lol! Oh, and I had 4 drains... 2 abdominal and 2 breasts. They were all 4 removed on day 10, which was one of the happiest moments of my life. Haha. The emotional part can be hard, but I really had a harder time after both of my stage 2 surgeries. I think it's because I was doing so well, and then I was back in compression and doing nipple care. I felt down for about a month after each of those surgeries. I will tell you this though... I have absolutely, without a doubt, zero regrets that I did the DIEP. It was worth every second of what I went through. My breasts look great, and I would do it all over again if I had to. The flat tummy is a nice perk too. I am thankful that I don't have to worry about issues with implants, and don't have to think about surgeries down the road to replace them. After my tattoos in April, I will be completely finished. Regarding exercise, my surgery was the end of January, and I just started back working out a few weeks ago. I wish I would have done it sooner, but I just wasn't into it. I am really enjoying it now though, and am getting more strength and flexibility back. I have a trainer helping me and am starting out slow.

This is a surgery that you definitely can handle! You will be amazed when it's all over at what geniuses your doctors are, and you will be proud of your own strength. And I should add that even though I didn't feel well, I tried to look at it as a little vacation and break from all my normal mom/wife duties. It was kind of nice to lay in the couch and watch movies, and have people bring me meals. It was also nice to spend that quiet time with my husband and daughters and other family members and friends. I wish you the best next week! You're going to do great!

LAstar

JMB, I completely agree about having the MX and reconstruction at the same time. I met a couple of women from my hometown that were in NOLA the same time I was. At 4 weeks, they were out driving around, wearing makeup, feeling good and I was still on pain meds and feeling awful. And I was 10 years younger than they were! But they'd had their MX 2 years earlier. It's a lot to go through all at once, and the time under anesthesia is a lot longer too. I'm hoping that my DIEP next month (OMG, I can start freaking out too now that I can say "next month") will be easier since there is no MX, it's only on one side (yay for my right arm!), and I've somehow developed a lot of belly in the last year.