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What’s it like one year post DIEP flap surgery?

What’s it like one year post DIEP flap surgery?

If you’ve ever wondered what it’s like one year post DIEP flap surgery, this post is for you.

Everyone’s experience is different, of course, so your experience might be very different from mine, your best friend’s, your relative’s or anyone else’s you’ve heard or read about. Still, reading about outcomes and experiences of others can be helpful as far as alleviating anxiety and keeping expectations realistic. Keep in mind, your experience will be yours alone. This goes for recovery too.

Also, it can’t be mentioned often enough that choosing breast reconstruction, or opting out, is a personal choice as is the type chosen, if and when it is. Judging anyone else’s choices shouldn’t happen. Ever.

So, what’s it like one year out from my DIEP flap surgery?

Note: You might want to read, What’s it like 6 months post DIEP?

I imagine the first question you might be wondering is, am I glad I did it, right?

For the answer to that one, keep reading. 🙂

I must mention that I recently had my phase 2 surgery. So, it feels a bit like that old one step forward, two steps back. Right now, I’m in recovery mode. Again. More on this later.

This post addresses how I felt before phase 2. Yeah, I probably should’ve written it before phase 2, but this is how I roll.

At a recent follow up preparing for phase 2 because the fun never ends.

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Below are a few tips along with comments about what it’s like (for me) at one year post DIEP. (‘Cuz I don’t want this to be just about me.)

Tip #1. Be patient.

It took nearly a year for my healing to be complete. Yep. A year. It was actually 11 months. I could almost pinpoint the date. Weird. My plastic surgeon told me upfront that complete healing could take a year, but I didn’t think it would actually take that long.

Keep in mind that complete healing is very different from initial healing, the latter being more about incision healing, pain and swelling resolution and such.

A lot of healing goes on internally and that can take a lot longer. It takes a while for things to settle down. Your body’s been through a lot. DIEP is a big surgery and complete healing takes time. So again, be patient.

Tip #2. Clothes will be all about comfort for a while, but shouldn’t they always be?

Maybe you’re like me and your clothes have always been first and foremost about comfort. Following DIEP surgery, you have to wear stuff that feels comfortable. Of course, this will mean different things to different bodies.

Finding underwear that fit and felt comfortable was a challenge for me. I finally came across a brand I like and it made a huge difference. I mean, huge. How things sit on my abdomen, or rather how things feel when coming in contact with my incision scar, matters. Maybe this will matter less after more time passes??

Honestly, I’ve yet to find the right bra. Granted, I hate shopping, even online shopping. So, I haven’t looked all that hard. I need to get on this. Before phase 2, I was wearing the same bra I had used with implants. (I don’t think this will work anymore. I’ll address this in that future, phase 2 post.) You may or may not be able to wear the same bras post DIEP. (When you’re done with post-surgical ones, of course.)

You might be wondering if all this comfort talk means you’ll never get into a pair of jeans but be stuck in sweats for a year. No. It doesn’t. (Not that staying with sweats or your favorite yoga pants isn’t okay, it is.) I was wearing my favorite jeans after a couple months. You just never know what will and will not feel comfortable, so don’t assume. Try it on. If it doesn’t feel good, take it off and wear something that does.

Tip #3. You might need or want a phase 2 or what’s commonly called a revision surgery.

My surgeon told me several times she would never tell me a phase 2 surgery was necessary or even suggest I should undergo one. That decision was mine alone. It’s yours alone too. What any one person considers “done” or “good enough” varies. And believe me, I get it if you reach the point where you say, enough. I’m done!

I decided to go ahead with phase 2. I’ll write a separate post about why I chose it and how things went. Most women probably do phase 2 way sooner than I did. I waited a year.

Typically, it’s recommended you wait at least three months before having phase 2, but the timetable is really up to you, your doctor and the availability of your surgical team. And unfortunately for now, how full your hospital is with covid patients.

Tip #4. Exercise helps!

Let’s face it, exercise helps with just about everything. I am not a runner, swimmer or any other sort of athlete. Not even close. However, I KNOW that getting back to my regular walking schedule helped me recover more quickly.

I got back to my normal walking routine (2-4 miles a day) by six weeks or so. I started taking short walks immediately. I waited probably close to six months before starting to lift dumbbells and before doing any abdominal exercises. I just didn’t feel ready before that.

Listen to YOUR body. Check with YOUR doctor.

Tip #5. You’ll need six weeks or so off from work.

I know I’m extremely lucky that I work from home. Generally, you can expect to get back to work around six weeks. If you sit for long periods, it’s important to get up and move around every hour or so.

Wearing your abdominal binder can be super helpful here. I wore mine for months when sitting at my computer. I’m back to wearing one again. Fun, fun. Not!

If you have young children at home, you’ll likely need help for awhile with the physical stuff. Of course, every family situation, every kid that needs your care and attention, is different.

Tip #6. Have realistic expectations.

Don’t expect reconstruction results of any type to compare to what Mother Nature gifted you with. Sure, expect a positive outcome (you deserve nothing less), but stay realistic.

I love the warm feel of my breasts now and their more natural appearance. They feel more like me because they actually are me. That’s a nice feeling. But they are still reconstructed breasts and I will always miss my originals. Yes, even after 11 years and after two different types of reconstruction, I still miss them.

Sacrificing your breasts to the damn cancer is a huge loss and that loss is forever. I give myself permission to revisit grief whenever I need to. You get to do the same.

Tip #7 Prepare yourself, and your partner if you have one, for the scars.

The scars are not tiny. I’ve got some doozies and I had some doozies even before this surgery. About that photo I said I might share. Maybe later. (Changing in a women’s locker room would be interesting. Haven’t done that yet, nor do I have plans to anytime soon.)

Honestly, the scars don’t bother me all that much, visually speaking. The times they have bothered have been when clothing irritated. That took some time to resolve.

I have been a little concerned from time to time with how Dear Hubby might react to my humongous scars. He doesn’t like watching gory stuff or even medical procedures on TV or in movies. The poor man has seen a lot during the past 11 years. I mean, a lot. But he’s handled it all really well. Granted, he likely keeps some thoughts to himself, but don’t we all? Yes, I know I’m lucky.

Tip #8. Your abdomen will likely be forever changed.

Abdomen changes are not addressed enough IMO. When you think about what this surgery entails, it makes sense that your abdomen is forever changed. It may or may not ever feel quite like it did before. Mine still doesn’t. Not that there’s pain or even discomfort so much anymore. It just feels different.

I will also say, I have lost some abdominal strength, although I am hoping once I get back to my core-strengthening exercise routine again in a couple months, this will slowly improve over time. I’m not entirely sure what the final outcome here will be. More time is needed to determine.

Bottom line, discuss everything abdomen related that you can think of with your doctor before and after surgery/surgeries. I can’t stress this part enough.

Back to that initial question…am I glad I did it?

Yes. Most days anyway. I do have days when I think, why in the world didn’t I just go flat? I also know that had I gone that route, I’d likely be having more days that I’d be asking myself, why didn’t I go for DIEP? (Remember, this is me, not necessarily how you or anyone else would/should feel.)

Let’s face it, all the options available post mastectomy suck. They just do. But at least we have options these days.

Each woman needs to determine which option sucks less.

If you ask me today, if I’m happy I chose DIEP, I would say, yes.

Final determination is yet to come.

And oh yeah, there’s still nipple/areola decisions to mull over. But those are for another day.

Okay, now ask me anything!

Learn more about DIEP flap surgery and other breast reconstruction options, including aesthetic flat closure, from my friends at PRMA Plastic Surgery here.

A NOTE FROM NANCY:Read the first 20 pages of my book, Emerging: Stories from the Other Side of a Cancer Diagnosis, Loss, and a Pandemic, via my Resource Library where you can download them for FREE. Order Emerging in print or for Kindle at Amazon. Emerging is also available at most online booksellers such as, Barnes & Noble, BAM, IndieBound, Bookshop.org, and more. Reviews are greatly appreciated!

If applicable, have you ever contemplated (or had) DIEP flap surgery?

If applicable, share your experience opting in or out of breast reconstruction.

Do you have a question for me? (If so, ask away.)

Is there a specific DIEP-related topic you’d like addressed in a separate post?

What's it like one year post-DIEP flap #breastreconstruction surgery? #breastcancer #womenshealth

Robin

Thursday 17th of August 2023

I just stumbled upon this blog post on Pinterest. I’m 36 and at the beginning of my surgical journey (diagnosed with BC in March 23). I appreciate you sharing your journey. When with the surgery team, you don’t get to address all these things because you don’t know what you don’t know. How would I know to ask about how my abdomen will change and what to expect? I wouldn’t… except now I do. So thank you. My bi-lateral is in a month with DIEP reconstruction 3/4 months following. May I ask what things get addressed in a phase 2 other than scar revision?

Nancy

Monday 21st of August 2023

Robin, I'm glad you stumbled upon this post. It's so true that sometimes you can't ask about things you don't know you should ask about! Definitely ask about abdominal changes to expect. This wasn't addressed enough in my situation IMO. In phase two any tweaking you require gets done. This can vary quite a lot. You should talk about phase two now before your phase one. I had some scar revision done, some excess tissue removed and liposuction to one breast for symmetry purposes. Sometimes, nipples can be reconstructed. I opted out of that. I'm sure other things are addressed too. Best of luck with your upcoming surgery. It's a lot to deal with but doable. Keep us posted.

Lisa

Sunday 15th of January 2023

I too had Diep flap surgery. I sometimes wish I had went flat but probably would have regretted it. One is large and weird looking. The other is small and looks good. Had they both been the same size I would leave it there. Since they are not I have to do more surgery. I will do that later. I need a break. I have found soft bras from Maurice’s work best for me. They have wide back strap and are soft and comfortable. All in all I’m glad to be alive. More surgeries to follow.

Nancy

Monday 16th of January 2023

Lisa, I think it's normal to sometimes wish we had chosen differently. I know I have! No matter what we decide, there can be regrets. I'm sorry you have to endure yet another surgery. That sucks. I understand about needing that break. Thank you for sharing about your experience and for sharing which bras work best for you. Might have to check those out myself. Good luck with those upcoming surgeries - and everything else too.

Karen

Friday 13th of January 2023

I am SO happy to have found your site! I am approaching the 1-year mark from having a bilateral mastectomy with immediate DIEP flap surgery and it’s been a lonely journey. It’s so hard to find anyone who has had these procedures done and I’m relieved to read your posts and know that others share so many of my experiences! The part about Covid especially hit home because I wasn’t allowed any visitors during my week-long hospital stay (not even my husband!)

My recovery has been long due to many complications including a hematoma (needed 2nd surgery the day after mastectomy), pressure sores on heels from 11-hour surgery that kept me from walking normally for weeks, sustained low blood pressure, abdominal swelling (8 months to resolve), fat necrosis causing pinched nerve, and now… possible rotator cuff tendinitis. Has anyone else had to deal with any of this in their first year?

I am also especially interested in knowing if anyone has experienced numbness in their legs after DIEP flap? Both my shins and one knee still feel numb (especially noticeable when shaving) and my right outer thigh is very numb. I’ve had sciatic nerve pain since May and I’m now wondering if this is related. My PS is aware of it and has just shrugged it off.

Thank you so much!

nic

Wednesday 26th of April 2023

@Karen, I have a numb shin, still, at 6mths post-DIEP. I initially thought it was from an overly tight compression stocking but my surgeon thinks it may be due to nerves being "stretched" whilst in a particular position during the surgery. I'm just in the process of trying to get a neurology consult. It doesn't bother me that much but I'd like to rule out it being anything major.

Adrienne

Saturday 28th of January 2023

@Karen, I had bilateral mastectomy and diep flap surgery July 2022. In a few days I am having revision surgery. It all seems like a bad dream since I was told I had cancer, but I really can't complain. I am very lucky to live about 25 minutes from a great hospital with a fantastic cancer center. The doctors, surgeons, and every caregiver were wonderful guides throughout my journey. I have almost full feeling in both breasts although I no longer have nipples. I might get tattoos when the time is right. . .or not.I am sorry to hear you are having some trouble. Perhaps a nurse or doctor has some answers. I wish you the best.

Nancy

Monday 16th of January 2023

Karen, I'm happy you found my site too. I'm sorry to hear about all the complications you've been enduring. I am not aware of others experiencing numbness in their legs after DIEP flap surgery, but that doesn't mean it hasn't happened. I hope you get answers. Having your issues shrugged off isn't acceptable. My best to you and thank you for sharing.

Kristie L Konsoer

Thursday 23rd of September 2021

Such an honest read. I have not had this surgery, so reading about your experience was very informative.

Nancy

Thursday 23rd of September 2021

Kristie, I'm glad you found my post informative. I appreciate you wanting to understand what this sort of surgery entails. Thank you for reading and taking time to comment too. Hope you're feeling well.

Lucy

Wednesday 22nd of September 2021

Hi Nancy, Thanks for your post. Sounds like you’re doing well. I’m five months out from my DIEP flap surgery, so I went back and read your 6 months after article. I found myself nodding at everything you wrote. Has the tightness in your abdomen ever stopped? That’s my only issue now. I also had a wonky scar issue, which was quite frustrating as I had to wait for it to heal so I could have ankle replacement surgery. Which means I haven’t been able to exercise at all since April. So now I have new boobs and a new ankle in the past 5 months. Crazy. I’m finally able to get on a stationary bike, but still in a boot for another month. I go this week to my plastic surgeon to see about my phase 2, as you put it. My scars don’t bother me so much anymore, but I think my husband is still a bit freaked out by my lack of nipples. Oh well. I still wear the binding occasionally, it helps with the constant sitting and posture. Best of luck to us both and happy healing!

Nancy

Thursday 23rd of September 2021

Lucy, The tightness has greatly improved, but my abdomen still feels different than before and I've come to accept it likely always will. It did take a long time to settle down and not bother me. I wore my binder now and then for quite some time. Gosh, that is frustrating to not be able to exercise since April. I bet it feels good to be able to do the exercise bike. You don't have too much longer to go with the boot - thank goodness, right? Good luck with your PS appointment. And good luck with phase 2, should you decide to go that route and good luck with continued healing too. Yes, good luck on that for both of us! Thank you for sharing.