Seeking DIEP recovery stories
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Indahood, I'm so glad you are healing well from your surgery, and that you have had some help! I second what abigailj said about physical therapy. I've had to go through PT after my radiation treatments and after my DIEP, and it helped a lot to get scar tissue broken up and range of motion back. It also can take time for the nerve damage to improve, especially with everything you've gone through.
I didn't have immediate BMX to DIEP (I have the football-shaped flaps from my abdomen), but I also have the side boob issue. I've already had phase 2 and my PS did some lipo there to reduce it. It still bothers me though, and I think in my case the flaps are too wide and extend too far under my arms. They look ok in a bra to shape them, but I really don't want to always have to wear a bra (that was going to be my silver lining in all of this). I'm hoping that with massage the shape will improve, otherwise I am going to talk to my PS at my next follow-up to see what can be done to make them a bit "rounder" (I can identify with the banana analogy).
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Abigailj, thanks for the positive thoughts!!! Surgery on Friday. I had a little panic attack because my ekg said abnormal, but they said it wasn't enough to stop surgery. And my blood pressure has been going up, I feel my heart pounding throughout my body. But since I've been off AIs and Celebrex, I feel a tiny bit better. They did another ekg today and is was lower.
Sharon, Have you decided which way to go?
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JRNJ, good luck with your surgery Friday! With all you've been going through it's no wonder that your BP is up a bit. I hope all goes well and that healing is quick and complication-free.
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JRNJ, wishing you all good things on Friday, including a speedy recovery and excellent results.
In answer to your question, I am leaning toward doing the DIEP. The tummy tuck is honestly what's swaying me. And that I have lived through BMX and people seem to say that if I've gone through that that I can handle the DIEP.
I just had my last dose of chemo yesterday and am postponing making a final decision till I feel a little more like myself.
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JRNJ... Best of luck, Friday with your surgery. I have to say that even though I'm just a few weeks ahead of you, I am already happy with my decision. My body looks pretty good. It's great to have a flatt(ish) stomach (it's still swollen and misshapen) and I feel pretty well. Mostly off the pain killers. No pain but my daughter makes me stick to them because of the anti inflammatory effect. Don't be shy to keep up on the pain killers while in hospital. It aides your recovery by helping you feel well enough to get up and about.
Also, don't be shy to go at your own pace. The hospital will have a schedule of "things" they want you to do at certain points during your stay. Stick up for yourself if you don't feel ready. I did, day 2 they wanted me to take out my catheter, but going to the washroom was soooo painful and I happen to have to go several times a night. I refused and they were good about it but later told me at the time they were worried I'd be the kind of patient who didn't want to do the recovery work. Instead, I flew through recovery work because I had taken the time to rest rather than push it.
Those are my suggestions sister! ;-)
Good luck, I think it's a great surgery though you'll feel at first like you've been hit by a bus.
Laurie
Indahood
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Sharon0706
Hi Sharon, I didn't want to pass by your questions so here are my responses.
Had the skin sparing Diep Flap surgery Jan 14 2021.
I hope you don't mind me posting my picture but like they say, a picture is a 1000 words.
I chose this surgery because I didn't want to have to redo a surgery in 10-15 years. I am 57 so I thought get this big one out of the way while I was still youngish.
I liked the idea of the tummy tuck (I know vain but it did play into my decision)
I wanted breasts that changed with my body. so if I loose weight, so will be breasts and if I gain, same thing.
I didn't want to look like an older lady with large perky breasts when I was in my 80's.
I wanted a breast reduction. So far it doesn't look like I got much of a reduction but hard to tell this soon.
I am happy with the outcome except my side boobs, but I'm told that will be fixed.
I'm week 2 post surgery and feel fairly slow on the energy side but no pain and am moving around fairly well.
Hope that helps.
Laurie
(Edited by Mods to remove photo of surgery)
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wow, indahood. You look great. Someone will probably tell you that you can’t post photos, but I appreciate being able to see your great results. They look so natural.I did subpec implant reconstruction and have been left with shoulder pain and chest tightness, even driving a car is uncomfortable. We are of similar age, and I so wish I could get a diep flap reconstruction. So afraid of the blood thinner issue. After covid and my daughters wedding I will do something. You look great and I hope you will be pain free soon. God bless you all.
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Laurie, thanks so much for sharing the details of your story, and your photo. So many of your choices resonate with me. You look great you're only two weeks out! Did you have drains, and if so, how long before they came out?0
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Indahood, if you look this good now, not even 2 weeks out, you will look. amazing in a few months- swelling takes2 months at least to go down. I was 15 pounds heavier when I came home after the surgery than I was before it even though I'd eaten almost nothing the 5 days I was in hospital, as I said it took several weeks to subside. And the flat stomach is definitely my silver lining in all this. 😊 I would say it took 3 months for my body to totally'settle' into my new normal shape after the surgery so it should just keep getting better for you for some time to come
JRNJ - will be thinking of you and looking forward to hearing from you when you're up to posting after the surgery.
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Indahood: You are so brave posting your picture. I commend you and by the way you look terrific. I’m 70 and not ready to post my picture, but I can relate to many things you have mentioned.
My story is this.....
I had my bilateral mastectomy in 2018 and due to a wound issue my reconstruction was postponed. I’m glad it was, because I was going to go with implants and found out I was not a good candidate anyway.
I had my Diep flap surgery 8 days ago and even with all the drains (I have 6) and scars I am really happy with my decision.
I do have the extra underarm dog ears, which my PS said he will liposuction out when I have my second surgery...and a bit of love handles which he will also get ride of.
As far as my experience with the surgery.....sleeping is an issue because I never sleep on my back. It’s doable though.
My tummy tightness is no fun. The incision goes from hip to hip. I also had to have my belly button moved but don’t have any issues with that.
My surgery was 7 hours with my PS and 2 micro surgeons. I was in the hospital for 3 nights because I really was doing great.
I have the football flaps on my chest but they really look quite natural. I know they will get better with time. One side is more swollen, but I believe that is fluid right now. I see my PS in 2 days so I’m anxious to see which drains come out.
After my second surgery I will have 3-D nipple tattoos instead of nipple reconstruction. At my age the tattoos will be fine. 😂
I may be missing things that you may have questions about......but here are a few tips on my end.
Get VERY loose pajama pants for when you’re home. Nothing tight around your waist. (Same for underwear).
Plan on not much cooking. (Standing long isn’t comfortable) Get easy to prepare meals (I’m still not real hungry....that’s a good thing).
I’ve showered every day, but have all your toiletries handy in your bathroom.
My PS gave me vests with pockets for your drains, check into these....they are terrific.Take everything SLOW. Don’t rush and if you can’t pick it up or reach it......WAIT! Or....Get one of those sticks with the jaws on the end to pick up stuff.
Let me know if you have any other questions. I’m here to help.
Jani
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Hi Sharon, I did have drains. They took them out on the last day before I left the hospital so... I had them for 8 days. Was super happy to get rid of them. Seems others keep their drains longer but maybe a different surgery?
My surgery was 14 hours under, drains and hospital recovery for 8 days. The first 3 days were coming down from the anesthetic high after such a long time under.
Good luck, It's a big decision but look at how many have gone before you. You'll do fine.
L.
indahood
For the rest of you, thanks for the compliments. I know I kinda really appreciated seeing people's pre and post op photos. So I shared mine here. I don't know if I'm allowed or not but honestly, after my week of everyone poking and prodding in the hospital, I lost all my modesty. lol
Onward and upward
L
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thanks everyone for sharing their DIEP experiences
I am new to this Board as I was freaking out about having surgery and I didn’t know who to talk to
I’ve had implants for the past 12 years but they are hard and unnatural and I need a revision now - so perfect time to get rid of them and look into DIEP- but I was all set to go with a local surgeon and now I’m not feeling good about them. I’m thinking of going to the Cleveland Clinic ( 3 hours away) for a second opinion. Is that crazy ? I just can’t find any locals with what seems like a lot of experience and I had complications with my original stage 3 which left me with open heart surgery 11 years ago too- so even though I’m 58 and in decent shape I probably need someone very experienced. Do I check with the doctor 3 hours away and see how many follow ups my husband would need to drive me back for after the initial hospital stay ?
I’m not worried about the recovery - I feel like I can handle it. I’m scared about a 12 hour surgery - and whats this CT angiogram you need first !
My goodness - my brain is going to explode. I welcome all thoughts !
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Sand21: The CT angiogram is super simple - it's basically a CT scan with dye to map out where your blood vessels run - the scan itself only took ~5 minutes for me, with preparation, expect 30 minutes. No big deal. This is super important as it enables the surgeon to plan out the surgery and reduce surgery time. That said, I would look for a surgeon who can do the DIEP flap in less than 12 hours as the longer the surgery, the higher the risk of complications, and it also increases recovery time. My surgeon is extremely adamant about keeping surgery time down for the patient's safety, and my bilateral DIEP flap took 7 hours. After 2 nights in the hospital, I went home. I had 2 office visits after surgery, where he removed the drains.
I actually had 2 surgeries and heard that's pretty much the standard as, during the first surgery, they'll do the heavy lifting and focus on the survival of the donor fat from your tummy. The second surgery was 6 weeks later, took only 1.5 hours, and my surgeon did some fat grafting and improved the cosmetic outcome. For me, it was 2 surgeries plus 3 office visits total. The result is amazing - so worth it.
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hi Sandi21 - please do use only highly experienced micro surgeons that do a lot of DIEP. My skin-sparing BMX with immediate DIEP recon took under 11 hours so without the BMX it should be less than that. If you don’t have any healing complications then it could be as few visits and procedures as ppp2605 had but even if it’s a few more visits (I was 62, ex-smoker so had some wound healing complications due to circulation issues and had a second revision procedure after first revision and not having my fat grafting to smooth out a divot due to an infection in one recon breast) it’s so worth it to have the best PS you can find, especially if there ARE complications, not only for best cosmetic outcome. Despite running into a few issues I am very pleased with my results and hope you get a great outcome too
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thank you for the encouragement. I’m new to finding doctors ( wished I would have looked harder 12 years ago) so I found 2 with a microsurgery concentration at Cleveland clinic - any idea how I find out how many of these they do ? Do you just call up and ask before scheduling ?
Sorry to ask such rookie questions !
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hi Sand21. These are good questions. I think you should ask how long they have been doing these surgeries in their careers and how many they generally do per year.
I interviewed two PSs before choosing one and must admit I obsessed a lot about the choice.Both practices had me meet with a PA before letting me schedule an appointment with the actual PS, which was annoying at the time but I understand why they do it that way.
You might also ask if there are former patients who would be willing to talk to you about their procedure. (This is a program that Dana Farber offers—they connect you with someone who is a year out from their procedure.)
I know it’s scary! I haven’t done the surgery yet. My strategy to manage my anxiety is just to ask lots of questions until I slowly start to feel more confident. I used the app Otter to record and transcribe every appointment so I could review everything later. No one I met with objected to my request to record sessions.
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Hi Sand21,
piggybacking on sharon0706's advice, ask them
- How long surgery will take
- Success rate (this has to be >99%)
- Are they performing the surgery alone or as a team with another microsurgeon (this has also advantages in terms of surgery duration, but mine was the only microsurgeon, so if they highly optimized their technique, you'll be okay with one)
- Recovery from surgery. I was feeling really well after 10 days, and back to exercising after 6 weeks, adding abdominal exercises after 8 weeks
- Pain management after surgery: my surgeon followed the ERAS protocol ("Enhanced Recovery After Surgery") and is controlling pain at its source through intra-operative injection of Exparel into the surgical sites. I did not need any morphine after surgery.
- Ask them if you can talk to one of their patients who underwent DIEP flap. I asked this question but did not follow up on it. For me, it was sufficient to know he has references to share
Take your time with your decision. I needed a year to decide if I wanted to do this and who would be my choice for surgery.
Good luck!
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nothing more to add from the great advice abovere: interviewing the surgeons except write down your questions since it’s easy to get flustered and forget something and if possible (understand it’s probably unlikely due to COVID) have some detail-oriented taking notes if they object to being recorded. Hope you get a surgeon you feel very comfortable with and have great confidence in too!
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I live alone and had Deip Flap 12-15-2020. I had a girls spend 3 nights.. I think you will be ok, it is just getting in and out of bed. I hear a recliner is the best but I did not have one. Just a large stuffed chair an ottoman. I found the drains to be the worst!! emptying them and recording how much drainage.. You are able to move around.. make sure you have lots of pillows to put under your legs!
YOU CAN DO It!!
Terri
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Thanks everyone for sharing. I was told that I’m not a candidate for implants so the diep surgery is my only choice. I had to wait one year after my last radiation treatment for reconstruction. I have two more months to go be for I can have the surgery. I’m scared of the surgery especially the scar from hip to hip. I have Kaiser in So Cal and wanted to see if anyone has gone to a Kaiser plasctic surgeon if so do you recommend them.
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I hate being a Debby downer, but the last few weeks have been horrible. But I am feeling better now. I was in really bad shape for 2 weeks. A lot of pain, a lot of drugs, side effects from the drugs, horrible horrible constipation than horrible diarrhea. Than emotional trauma because I felt like the surgery was a disaster, I had two flat pancakes, one bigger than the other, really far apart and I looked like Frankenstein. The scars were not in places I expected based on pictures I had seen and not symmetrical. I have OCD so really wanted them to look identical with scars in same place. I had two Drs. working on me, each one did a side, is this normal? Once I stopped all drugs and got the drains out, I started feeling better and able to get out of bed. They are starting to look better as they heal and loosen up but I'm still not sure if I am happy or not. My scars look like big eyes. Like the flap is under my skin. I thought the flap scar goes under the breast. Dr. said I had a lot healthy skin left so they were not going to cut it out. And I didn't have a lot of stomach fat to work with. Was 5 feet 2 inches, 138 pounds. Is this normal for my scenario? Anyone else have scars that look like big eyes? Seems like most Drs. tell patents revision surgery is automatic, but mine just keeps saying lets wait and see. That makes me feel like he is not as experienced as others.
Indahood, Thanks for much for being brave and posting your pics. I saw them before they were removed. Looks like you had circle like scars, or was that nipple reconstruction?
lrobbins17, one year sounds excessive. I was told 6 months. I had very little damage from radiation.
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JRNJ, I was wondering how you were doing. I am glad you are starting to feel a little better. It sounds like it's been rough on you. I had my revision surgery in December, and I can tell you that things do change and "settle" as they heal. I understand completely about you wanting things symmetrical. Mine are still not symmetrical but my PS said it takes longer for radiated skin to settle than non, so I still have one higher than the other. It bugs me, but I have to remind myself that it is a vast improvement over my flat chest. My scars are very obvious since I had delayed, but it is what it is. I will probably have another revision, but my PS wants to let them settle a few more months first.
I know it's hard, but try to reserve judgement on how things look until you've healed a bit. It's going to change a lot as gravity kicks in and scars fade. The first surgery is more about getting things moved to the right place than the cosmetic outcome, and then they try to make them look more natural in the next surgery.
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Hi lrobbins - I recommend starting a thread with a subject like “Need SoCal recommendation for Kaiser network DIEP flap surgeon" - that might help more women who can advise on that specificasee it.
JRNJ - welcome back, so sorry to hear you've had such a rough time. I had 20 pounds more on my 5'2" body when I had the surgery and it was skin sparing immediate DIEP at same time asmy BMX so different experience. However although I can't say I was unhappy with the initial appearance I wasn't thrilled. It took the first revision and then time for things to settle before I got to “definitely happy" and I've been working on the scar tissue with.a wonderful PT so feeling a lot more comfortable in my changed body. So as whatjusthappened said, please be patient and give it some time. And also do start massaging to prevent scar tissue hardening too much and get good flexibility back when safe to do so (probably 2 months but PS will advise for your specific circumstances), use silicone gel or strips if you want to as well to fade the scars. Hoping you will be happier with results in the coming weeks!
Abigail
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I'm sorry you've had such a rough go of it, JRNJ. It is a very big surgery, with an extended recovery time. It does get better.
As far as your questions, I did have two experienced microsurgeons for my surgery, one for each side. It's pretty standard. I was fortunate that my surgeons had been a team for quite some time, and were able to match my sides pretty well. From what I understand. that's really unusual for the first surgery. My breast surgeon was amazed at how symmetrical they were. I still needed revisions, though.
The first revision was a lift, with some fat grafting. They also reduced the size of my flap skin to about the size and shape of a large areola. They did major revisions on my abdominal scar at the same time, as it was initially really crooked and jagged looking.
The second revision was smaller, with minor fat grafting and nipple reconstruction. Very little downtime on that one.
I will probably have one more surgery, with a minor reduction in size, and one more round of fat grafting to fill in some divots on my chest. After that just the tattoos.
It is a process. I happen to believe it is worth it. No foreign objects in my body. Just warm, soft natural looking breasts. I hope it works out that way for you as well.
Best wishes for continued healing.
Tris
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Thanks for the responses. They are starting to look better and loosen up, and they look better in a sports bra with padded cups. I'm not sure if I am supposed to be wearing one yet. It's been 2.5 weeks. My Dr. hasn't said anything about doing a revision surgery and when I ask he just says let's wait and see. I don't get that when you all have had multiple "tweeks". My abdominal scar is a little crooked, but overall ok.
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it’s so helpful to read everyone’s experiences.
I think the big thing for me is that the PS I saw at our local cancer hospital said plan on spending 6 weeks do absolutely nothing. That seems long
Also I know I will have lots of abdomen tissue as I lost 70 pounds over the last 2 years but I am still overweight - 5-3 and 168. I can’t lose anymore right now. I need a break and also - my stupid implant has to come out soon since it’s encapsulated and possibly some bad tissue - so I don’t have the luxury of getting lots of opinions over months.
My out of town opinion is 2/23 and I can’t wait as this DR is supposed to specialize in micro surgery whereas the original one does mostly implants. I don’t think I want a 12 hour surgery - I’m still so stressed
Having survived a Stage 3B was such a win to me that I don’t want to be greedy about my breast ascetics I just want the implants out
I even asked about flat and she said no since I’ve had them 12 yearsand I would be pretty concave once they remove everything - maybe the second opinion guy at Cleveland Clinic will have more ideas
Thanks ladies for sharing so much it really helps to write this down !
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Hello all, just a response to JRNJ. Yes I have eyes on my boobs too which I also found surprising. Most pre and post pictures showed scars coming from the 6 oclock position but mine are from 9 and 3 o'clock. So more visual scaring than I anticipated. As far as symmetry, they are pretty good but not perfect. One hangs lower than the other. When I pointed it out to my PS, he was surprised. But here's what I think might be happening. My breast pre surgery were not symmetrical either but that's I had already had a lumpectomy a few years before this surgery. Because I had skin sparing double mastectomy with rebuild at the same time, the non lumpectomy breast, had more skin left so evidently it now hangs lower than the lumpectomy breast. (my lumpectomy was at 5 o'clock position) it's pretty close though. I just keep telling myself that this is the result of a cancer operation and not a 20,000 boob job. That helps me keep any disappointment at bay. I'm only 5 weeks out and I've been told to wait it out. I won't really know what they will look like until around 6 months. So, I wait.
Like you, my PS doesn't talk about revision surgeries. I figured that was because I was in Canada and our surgeries are paid through our National Health Care system so... probably not as much as the PS in the private system will get paid through private insurers. And before surgery, when I asked about liposuction to make my breasts not look strange with extra fat under my arms, my PS said he would do it and not to worry because he never charges his cancer patients. That indicated to me that, the cosmetic part was not covered. I knew that from a long time ago when my daughter had to pay extra for lipo when she had her reduction. I don't know the US system of health care but...you might want to look into what your particular insurance company is willing to pay. Maybe only the first surgery for health reasons.
No doubt though, when I have my new nipples tattooed on, I will have lipo under both arms. I have way too much fat under my arms. Still feel like I'm walking around with books under my armpits. This issue, I have been told is because when they repair the skin from the micro surgery under the arms, They inevitably pull skin forward bringing with it the back fat. Boooo. I was going to try to loose 10 lbs before surgery but before was during xmas and such a difficult time to deny oneself.
Anyway, I think the most positive aspects of my surgery are:
1. I now have a much less chance of having a recurrance of Breast Cancer. In fact my chances are less that your average woman when before my chances were 3X that of a non cancer woman.
2. My stomach is flatter than it's been in 20 odd years.
I keep my focus on these positives and prey that once the swelling is gone I will be happier with the results than I currently am.
Cheers to all my Diep and Trans flap sisters.
L
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Indahood, I don't think it's a money issue. I have very good insurance, I work for State government. My Dr. works for a private practice and is head of reconstructive surgery at the hospital I go to. He has never said no to any surgeries, just to wait and see. And he told me due to my diagnosis insurance will cover me for life. But he would not be allowed to charge me more than insurance pays as an in-network Dr., so you could be right. When I asked about fat grafting he kind of blew me off. Maybe insurance doesn't pay for that. My stomach looks pretty good. But I am still emotional right now and getting upset very easily when I look at them. One is flatter than the other and the scars are bad. One "eye" is sunken in and the other is puffed out and much higher. At least if they were even they would look like weird shaped areolas. I was mentally prepared for small, not flat and wide like a pancake. And I had a scare today. A small portion of the "better" one started caving in and turning blue. Is this a sign of flap rejection? I took off my sports bra and it got a little better, but still has a "divot". Is this what people meant when they said they were getting divots filled in? I thought it was around the scar area. How long til you can wear a bra? I'm an emotional wreck, it's all getting to me, not leaving the house, kids not leaving the house, being sore........
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Sand21, if you are worried about a long surgery, ask if your surgeon works with another during the surgery. With two surgeons working, my surgery was less than 4 hours.
Indahood, here in US, the cosmetic portion is covered. I had liposuction under my arms as well as lowering the abdominal scar during my last revision. I also had a lift on one side. I've seen my PS twice since then. The first time he didn't want to talk about any more revisions (wait and see), but the second time he said he can fix those things that are still bothering me. I just need to wait a few more months, and then we'll make a plan. I think the surgeons don't want to say anything until they see how things heal.
JRNJ, you have every right to feel emotional right now! You've been through so much, and the psychological toll of it all is high. And all this COVID stuff certainly doesn't help. My PS said that flap rejection usually occurs in the first few days following surgery. That being said, portions of tissue can be starved of oxygen and die (fat necrosis), so be careful about wearing very constrictive clothing until your PS gives you the OK to do so. I had fat necrosis on both sides, and my PS cut it out during my revision. I remember opening up a stich and bleeding after wearing one of my snugger sports bras. After that I stuck with my loose coobie-type bras. It wasn't very flattering, so I just wore loose shirts.
It is my understanding that the PS will leave more of the flap showing initially so they can monitor the flap more easily. Then in a subsequent surgery they can "bury" the flap so that you have smaller "eyes". Mine are not this way since I never had TE's, but I've seen pictures of this on the DIEP Facebook page. If you haven't checked out that group, it would be worth looking into, as many women post before and after pictures of their revisions. It might help to see what's possible.
Wishing you all a speedy recovery and emotional healing.
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Thanks for the info, WhatjustHappened, I'll definitely go check out that facebook page. I find pictures to be helpful.
JRNJ sorry this is causing so much stress. It is emotional. I remember talking to an woman from work who had had the operation 2 years before me and she warned me that it was hard but I kinda didn't listen. It was after the surgery that I remembered all the things she said. I also have one nipple that is more puckered in as it heals. I'm just going to wait it out as the women here at BC.org and my surgeon have advised. I believe them and anyway, I know that as things go along, I will have choices presented to me and if I don't, I will speak up. I hope you'll feel free to self advocate too. Sounds like you have good insurance. Could be, your PS just isn't as informative as others. Mine isn't either, if I don't grill him with questions he's just willing to say: "ok good looks like it's healing well see you at your next appointment"
Sand21, Good luck with your appointments etc. I don't think it's greedy to have a nice outcome. You deserve it. Cancer is quite the ride isn't it. I think 6 weeks is plenty of time to heal. I'm week 5 and I've already xc skiied and rode my bike. (lol I have studded tires and ride all winter) I was thinking of going back to work, but have realised after my exercise days, I still need down days. My recovery has more been from the anesthesia after such a long surgery. I thought about going back to work this week but my insurance said maybe I was pushing to go back too soon. So I'll wait one more month just to be sure I'm ready. As far as your weight, I'm exactly the same height and weight as you and the abdomen looks great. So lovely to get rid of the folds. Comfortable.
Let us know how it goes, I'll be here.
L
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