DIEP 2014
Comments
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Ladies, my first post on this thread but I have been following you for a while since I plan to have a delayed DIEP - date TBD.
Watching you on your journey from afar has been so helpful for me during this process. I feel like I know most of you already as I've read all the posts. There was so much information to process in trying to make a decision about reconstruction. I just completed neoadjuvant chemo and am scheduled for BMX this month. BS says rads may be needed (depends on SLN etc at surgery) and if so wants me to wait 6 months for DIEP (so having TEs at BMX). Obviously I'm hoping for no rads and to get DIEP in 2014. Hoping Wilbur will keep me company as I start into the surgery phase.
S
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Seashore -- welcome to the forum -- like you I had read the 2013 DIEP cover to cover and felt very well prepared for the surgery, knowing all the possible issues. Nothing surprised me because of how graciously everyone had shared their experiences -- good and bad.And Wilbur is like Santa -- flying around the globe at warp speed to be wherever needed -- including with you!
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Everyone, thanks for the posts about Wilbur! Yes, I definitely had the same experience! Two of my girlfriends saved my messages for me. Absolutely hilarious.
Thanks to all who have posted too about the "funk" stages. Georgiegirl, you say week 3-4 is known for that? That makes it more bearable knowing that but it sure ain't fun.
Oh, about the rib thing: I had seen something about that here too and asked the microsurgeon about it before the procedure. He said yes, they have to remove part of a certain rib (can't remember which number rib) in order to reach the artery they need to graft to. When I mentioned it to the PS she was quick to qualify: it's "rib cartilage."
I believe these PS's shy away from anything they think will scare us off. In my experience anyway, both of mine painted overly optimistic pictures. Personally, I want the straight facts. There is no guarantee your result is going to be as pretty as their sample patient pictures. Hopefully yes, but also it's not just that you don't wake up beautiful after the first phase - in fact you might wake up as I did thinking you look a lot worse than you looked before and can't see how on earth it can get better! Well that's partly my depressed mood talking but really, I think the better prepared we are for the possibilities, the more empowered we are and the faster we will progress in our journey back to wholeness. I mean, we're survivors, people! We can handle the truth!
I envision a future, not too far off, when this DIEP procedure is far less invasive and much quicker to heal. It's bound to happen. Hey, that makes us trailblazers! That's cool!
Thanks again everyone for being here and sharing your feelings, tips, humor and all. It's always good to be here.
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BTW, as far as I know, Jeannie does not know a Wilbur, or was there a Wilbur involved in her surgery. so....?
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seashore - I also had neoadjuvant chemo. I had immediate DIEP and am currently going through rads. I knew I would need radiation from the beginning due to the original size of the tumor. The flap is holding up extremely well to rads. I finished #17 today. My PS said flaps hold up well to rads due to the strong blood supply and had no problem with immediate reconstruction. Not sure if you are thinking about immediate recon but thought I would share my experience.
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Goldie - I don't think Jeannie knows an actual Wilbur....I suspect she got auto corrected : but that's good because it sure brought all of us some good times.
Thinking of you NicNak and Shine!
Somebody said something about the week 3-4 funk. It's not pretty but is pretty common. It's like your mind is ready to be doing more and feeling better than your body can handle and was a frustrating week for many of us. Listen to your body. It's in charge right now!
Love to all you '14 Flappers!
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Morningsun1, I play tennis as well. I am now 14 weeks post DIEP flap surgery. I have played a couple of times but find that the twisting really takes a toll on my abdomen, and I ache for several days. I was hoping to play on a women's tennis team this summer, but there is no way I could do that.
I also had a reaction to the dissolving stitches and oozed fluid from tn stitches for weeks. It is finally starting to heal now, although I am still very sore along the abdominal incision. Guess it all just takes time.
Still the results are great and I am glad I chose this surgery --- but it was a big surgery.
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Wilbur...nope don't remember seeing him...
Hubby kept everyone apprised during my Diep and a week or so afterwards I went through the 300 or so posts that occurred during the 12 hour surgery and a bit beyond. Lo & behold, there were a few from me...most of which I have no recollection of writing but were all grammatically correct and "signed" by me so they could distinguish from my hubby's post, who doesn't have a Facebook page.
It took them awhile to manage my pain meds...I was essentially hallucinating I was a hamster in a treadmill...the room kept doing 360's over my head. I do have a pet chipmunk named Forest...because he is always running, you guessed it, in a treadmill.
Now, seven weeks out my crop circles are still oozing from stitch rejection and even my abdomen, which has healed brilliantly and without incident, spit one out last night.
And so it goes...
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Heidi, Wilbur was with you. I promise. The fact that you don't remember making those posts proves he was with you...lol. I have my stage 2 next week, and I can't wait to see him again.
Bailey is right, that week 3 to 4 is a real bugger. It's a rite of passage, and most come out the other end doing much better. It's a pivotal time. Maybe it's when all the anesthesia leaves your body, or when our bodies are so tired from working overtime to heal, or we start feeling isolated and lonely after being in the house so long. Who knows why we all seem to have it, but it's real. I was listening to a radio show about recuperation from heart surgery, like by-passes, and stent placements, etc. They were talking about the very expected period of depression almost all heart surgery patients have, and what they are doing to deal with it before it hits. Maybe they will realize, after they do a million more dieps, that we need some help too. Now that PTSD is becoming an accepted syndrome hopefully they will realize that it comes after all kinds of mental and physically frightening occurrences. My niece, who was burned by that fire last month, is being treated for PTSD as part of her recovery. I believe women who have BC should be treated for it too. From the second the doc says, "you have breast cancer" your nightmare begins, and does it ever completely go away? Ugh, I am rambling. I took an Ativan tonight. I am a week away from Stage 2 and going into freak out mode. The tell tale cleaning started today...lol.
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I couldn't agree with Goldie more. Week three is a b*tch! It's the perfect storm of frustration, fatigue, healing, loneliness, and the desire to move on but still not being able to put your arms over your head and walking around like a tyrannasorous with a stomach ache. It felt like it had been two crazy years of sacrifice and struggle, but no rewards.
That was the only time I remember ever questioning my decision to have this surgery. But like all those who went before predicted - that's the same time I turned a corner. And now I feel great, and excited about my new (1 yr old) frontal realignment. Hang in there everyone. And don't wrestle to hard with the mental discomfort - that too shall pass.
PS I love Wilbur
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So helpful to read everyone's posts about the mood dips. Sensing that is around the corner for me as well. Thanks so much for sharing.
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Wow, so much to talk about here! Heidi, yours is the first post I've seen about hallucinating. I don't think that's a normal side effect. It happened to me when they gave me Ultram for pain. I was more disoriented from that than I was on the post-op IV stuff, which I think was oxycodone. That's the pills they sent me home with, though all I've needed has been Tylenol - and Ativan! Lol
I see a lot here validating my Third-week Funk. It's powerful! I think mine was all the worse because my results are so awful-looking. Which brings me to a question. I know the first stage is never perfect and that things change a lot after a few months or so. But how often does it happen that the surgeon ends up doing things differently than planned, requiring a major revision?
My PS went on vacation shortly after my surgery so I haven't yet been able to discuss this with her. But right after the surgery, that afternoon, she told me she didn't remove the stiff radiated tissue as planned. I was too incoherent to ask why. That left me with that hamburger bun shape I've seen described here, but huge! We're tallking a 7-1\2" diameter foob. Now, I am 5'6, barely 140 lbs and went in with 36-C's. On the other, healthy side she did the reduction as planned, but its now a tiny little B cup, sticking out like an ice cream cone! Only 5" across. Now, this is absolutely impossible for me to imagine "quieting down" into anything like the patient photos she showed me. She told me beforehand that the Stage Two would only be about nipples and tiny fat adjustments.
I hesitate to rant here but I sure would like to know if anyone else here experienced anything like this. Hopefully it can all be fixed. I just feel like she should have explained this to me, or had another surgeon talk to me about it before I left the hospital. I have seen the microsurgeon for post-op but won't see the PS for another few weeks.
On the positive side, physically I am healing beautifully. No oozing or anything like that. Incisions already quieting way down. And I have my husband and 2 kids on schedules such that I am hardly ever alone more than a few hours. Those are great blessings.
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Everyone, thanks for the welcome!
Aff, glad to hear you were able to have immediate DIEP and going well. I just changed my whole surgery team in July. Only a few PS here do DIEP, so usually a wait. It is only IF I have to have rads in the meantime, she suggests waiting 6 months - otherwise will be scheduled as soon as possible.
Since I'm triple negative, MO wanted BMX within 3-6 weeks finishing chemo. I really wanted immediate reconstruction - and my original BS worked with certain PS groups (which only did certain other flaps). After consults, I initially chose a PS group to do an immediate free-tram flap (although I knew it would take muscle). But when scheduling all docs from the 2 practices couldn't get me on schedule until 9 weeks after chemo - well I kind of had a melt down! I briefly considered going out of town but opted to stay local and had consult with new BS at Univ of KS Hospital (where they do DIEPs). I love her, she came here from MD Anderson, and feel very comfortable with this new path.
Ridley - loved your description that Wilbur is like Santa! We need a Santa!
S
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bailey, I have to tell you that I love your signature quote, about your track record for getting through tough days being 100% so far. Something we all can identify with!
Tina
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Count me in as another who had the three week melt-down. No fear or depression....just an inconsolable ache to see my children, who both live an hour or so away. We made a pizza date for the weekend (fantastic selection, gourmet ingredients) which perked my spirits up a bit. Nonetheless, tears again when we were all ready to hit the road....very unlike me (my nickname was the AQ...Alien Queen when they were growing up). I reasoned that it was due to an uncharacteristic emotional release on my side resulting from a dawning awareness that this surgery, along with clear pathology and PET/CT scans, was finally putting the beast at bay. Triple negative and five years out never completely left my mind, though I was excellent at compartmentalizing to keep my fears under wrap. I was good at it too....until my March 2014 BIRADS3 mammo. DIEP was a no-brainer for me.
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Hohoho! And here I was, thinking Wilbur was someone's husband, being a grump because he was worried about his wife, coming out of surgery. I always wondered about him! Thank you to eveyone that chimed in on their own "Wilbur sightings!"
Tina
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Good morning! Andrea my surgery is August 15th! Yes, those bali bras are the bomb! Can you believe they were marked down $3 more dollars yesterday?? I got a the bali's for $8 a piece after all the discounting.
Teacher, where is your bruising and how are you feeling today? Are you in compression? Hope the next few days bring more healing and some rest. Did the dr. say when you can start your work outs again? And what are you wearing on your nips? They told me to use stacked nursing pads with holes cut in the middle. I’m trying to envision this...
Nicnak, Shine and K79miller how are you doing?
Pzercher thank you for the kind words. You are so right about the pressure to be positive...this journey has it's ups and downs. I appreciate the transparency that can be found on this forum.
Seashore (love your name) welcome! Keep us posted on your next steps and how you are doing. Are you a Kansas City girl too?? Who is your dr at KU? Is it Dr. Holding or Dr. Bousche by chancer? Great place! If you want to connect let me know! I also have a new local friend I met through Look Good Feel Better class at Gilda's club about a year ago and she also has TNC and we have become close. I know she’d love to meet you as well.. Great support system to have some friends to share with that are also going through it. . pzercher and I are going to connect as well! PM me if you are interested in meeting up sometime! I am glad you found the forum. Lots of good info and people to be found here! And Wilbur will be there for you too!
Bailey so true about the 3/4 week mark and minds ready to do more than bodies, among other things!
MS I am a straight fact kind of girl too. I want to know all the particulars. I agree, we are trailblazers! It’s amazing to me how many people I talk to who don’t know about this surgery! I hope it becomes more widely shared and available as an option to women who want reconstruction. I hope you get to feeling better too.
Goldie, I couldn’t agree with you more about the support needed for the diagnosis of cancer. I struggled through chemo. No one offered counseling even though I sat in the oncologist office tearful, talking to the nurse about my feelings of isolation, fatigue and sadness. I was shocked they didn’t have anyone on the team there at the cancer center that did counseling. WOW! They referred me to fatigue management, which was helpful but certainly did not address the emotional impact. I finally got in contact with a wonderful psychologist after my mastectomy. Nothing prepares a woman for this surgery or anything after the words “you’ve got cancer" for that matter. I found myself in such a sad place especially after the surgery. The psychologist was incredibly helpful, just someone to listen, validate. I still see her but not as frequently. I’ve found support groups to be helpful too and friend like you all! I agree, the emotions that go with this diagnosis and lack of wrap around services for mental health is a big hole in breast cancer treatment. The psychological impact is HUGE!
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Stage 2 was Wednesday and the nips look ok. The bruising is horrific. My PS did fat grafting from flanks and that's where the most bruising is. He took the extra skin from under arms and revised the belly incision and right dog ear. Those areas are doing nicely. I'm using non-stick surgical bandages, stacked with holes cut out for the nipples along with a little bacitracin on the nips, incisions, and another raw area from tape (I seem to get one every time!). I'm wearing a compression binder just like after DIEP but there are NO drains!!! I don't see the PS til the 14th be use he's on vacation but he previously told me only walking for a month. He did specifically tell me not to rise my arms over my head for a week because of the underarm incisions. I'm really pleased to not to have that huge roll of skin under my arms and already the breasts look better with divots filled in and more compatible in size. My PS said the left side would still be a bit smaller but not as much as before. Stage 2 really is the fine tuning. I know some have to have stage 2 done in a and b sessions, but I think I'm done!
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Teacher- "Done" - Wow! I can't wait until I can say those words and feel that emotion! Cheers!
I am so weepy today. I am dealing with two open wounds on each breast. Each day I must pack the wounds wet/dry....the wounds are not healing, and I think I will need another surgery just to close or graft these wounds. I see the PS on Tuesday.
I also think there should be some aspect of our treatment, which focuses on PTSD. If not for all the ladies on this site, I would be lost!
I hope all are healing well!
Lisa
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Hi Lisa, sorry to hear about your healing issues. I feel for you. It's good to come here for support and info. It can be so frustrating, the long recovery from this procedure. Best wishes for progress in your healing and beautiful end results.
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MsW2012: Thank you for your kind thoughts! I know it is a marathon and not a sprint.....just a tough journey! Lisa
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Teacher, how did your PS deal with the extra skin under the arms, or should I say "side of chest wall." So many women have this issue after mx. My first surgeon explained that when they remove the breast it is attached to the pad of fat that runs along the side of your chest wall, and when they detach it from that the fat just rolls up and has nothing to make it lay smooth anymore. If you are lucky, you have a good BS, and it can be avoided. I wasn't that lucky. I know many women who have had implant recons and have to have lipo on the side afterwards. On the implant thread they call them bat wings...lol. We need a name for them here.
Lili, I sympathize about the wounds. I have been dealing with a fairly good size one on my tummy, but it is starting to heal. It seems once it gets going, which seems to take a while, it heals pretty quickly. Hang in there. It is such a drag and so depressing.
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Love, love, love!!! Wilbur is great!!
Ally
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Thank you everyone for the well wishes. Sorry it's taken me so long to post again but it's been a busy week around here. The bruising is really extensive on my right side. On my left side I have quite a few small bruises & a big one low on my hip. I was able to start sleeping back on my side last night which was nice but the bruises are still pretty tender so it was kind of hard. He also extended my tummy cut out another 1"-1.5" to remove the dog ears. This journey with the chemo & radiation & then the DIEP has been a long one but thankfully there is a light at the end of the tunnel. PRMA has been fantastic & I can't imagine going any place else to have my DIEP.
georgie...I have to wear 3-4 nursing pads with holes cut in the middle of them so that nothing presses against the new nipples. PS told me that if they get flattened rubbing against anything that they will stay flattened. There is no way I'm letting that happen! LOL I have to wear a full coverage bra with underwires until all of the stitches have dissolved, which about 4-6 wks. I also have to wear a girdle but I'm not sure how long I have to it. I'm waiting on an email from my PS nurse to tell me that.
Teacher...glad you are doing good. I was pretty shocked when I first saw my nipples & the bruising on my flanks. I imagine it will take quite a while for all the bruising to fade.
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Teacher, "done" sounds so good! I'm so happy to hear your pleased with how things are looking. I look forward to the time I'm in the same place.
Lisa, I'm sorry to hear you're having problems with healing. that must be so frustrating. I hope things starting going better soon.
Georgie, I love all the kind, supportive words you have for everyone. You're a gem!
Wishing everyone a good weekend!
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Goldie - my PS lipoed the underarm fat and redid the in incisions. There is still a bulge but nothing like before. I have however developed a terrible rash. I must be allergic to something so I have to see dr tomorrow. I itch and don't feel my best.
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Teacher, done sounds great. Sorry you now have a rash but hopefully tomorrows visit will help that. Glad things other than the bruising are looking good.
Goldie, this week? Wow, wishing you all the best. I was just reading about the 3 week funk and feel like I am having 3 month funk. I finally yesterday did buy some expensive bras, all Bali's and so today is the 1st day in 3 months I am in a bra. I so miss my underwires but these are at least letting me look with clothes on normal, I guess. I feel bummed out, I know it is because I have to go to Chicago for work and "dress up" for the whole time. That means at least 9 nice outfits and its hard to find clothes that fit my odd shape right now. I don't feel like I have a waist so pants aren't fitting me right. I am down a size but it doesn't matter I am oddly shaped. Its getting to me emotionally. I still have no regrets and know I need to learn some patience but I am feeling a bit down. So, this week you will have your breast revisions and next time tummy and lipo? And mine is about the opposite, this time tummy and side bulge and my odd divot thing, hoping next one will be lipo, grafting and a lift. I guess that's what makes me nervous, I am not done and hope my PS doesn't all of a sudden think I am! always read into the unknown. I have to try to fit in my pre-op before my trip, hoping the timings will all work, I am stressed!!! I will be in your pockets making you laugh with Wilbur this week.
Lili- I am sorry to read of your wounds, ugh... the things we go though. Dang I am tired of it today, I probably shouldn't be posting all my negativity!
Georgie, I will be thinking of you on 8/15, congrats on your date. What a deal on the Bali's!! And I paid $40 for 1 and half price for the other JCP yesterday. I am happy to finally find something I can wear. I was also at Kohl's yesterday but had already gotten my bras at JCP. I have been shopping like crazy for this work trip. Wish I could just be comfy like I am at home.
xo
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Any of you ladies did DIEP with Dr. Anderson in city of hope? Or know anyone who did? thanks
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after hearing all of the stories about Wilbur, I am so jealous that I never got to meet him!
I was always told that I need a lot of medication to "put me under" & the pain medications do not seem to affect me. About an hour after waking up from diep, I was fully awake & alert and was replying to texts & emails from my ipad and surfing the internet. Never felt loopy or drugged at all. I was on a morophine pump & stomach pain "ball". I just wonder why some people have such different experiences. I was actually looking forward to having that relaxed, "drugged up" feeling - never got to experience it.
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Teacher, whatever bulge is left is probably swelling and will go away. I have so many little areas that will need lipo to fix what this surgery has done. I will be sore all over.
Lemon, I know what you mean about the tummy thing. Things that don't go all the way to my waist fit, but I have a pair of capri's I wore the day before surgery that I cannot button now. The tummy "tuck" changes the shape of your waist and hips. It's not a real tummy tuck so they don't really work that hard on the aesthetics unless they really are perfectionists. Not too many are. Maybe your revision will help with the odd shape problem? Good luck on your business trip.
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