DIEP 2011
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I had a few surgeries this summer and hip flap and a DIEP flap plus a wound surgery and port problems... Through ALL of that, my husband took 2 vacation days... so it all depends on what kind of support you have besides your husband... My employer has been fabulous, although they offered me the job I have while undergoing chemo, so they knew what they were getting when I started... and have always said my health comes first.
As far as failed DIEP flaps... I think almost everyone has some necrosis, and so its a process. I had a flap loss, but it was due to compromised skin and an open incision... one thing led to another. And now I have one hip flap and one DIEP flap, a month apart... The DIEP flap is softer than the hip flap so I guess its possible I have some necrosis in the hip side... stage 2 is in one month, so I guess I will see... but all in all, I think it is fine... just firm.
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My DH has had to take weeks of vacation since my recurrence at the end of March. Luckily he has more than he can ever use, as he has been with the same company for 31 years. We moved half-way across the country in the middle of this, and had to move my mom with Alzheimers with us to a new facility. My DH drove us with a uHaul holding my mom's stuff from MO to NH, then he drove back to MO and left me here with my daughter. He packed up our 2700 sq house on his own with a couple of hired hands and drove back to NH. My kids have helped a lot but they have lives, too...jobs, kids, one is finishing her degree, etc. And I had 8 rounds of chemo and DH has been to almost every treatment. At least one of my kids also came to almost every treatment. Last summer both my girls flew out to MO when I was having my biopsy and when I had my lumpectomy and radiation. And they flew out again when I had my BMX this spring before we moved. My son flew out and helped us pack up my mom's stuff.
Believe me, they've all been through the wringer right along with us. I'm worried that we all need a break. I'm going to Florida for a week for a "no cancer zone" vacation. Maybe I'll figure this all out by then.
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i know how you feel... I had decisions to make this past May/June to either have radiation OR have a MX... I knew if I chose MX I would go to NOLA and have the DIEP flap, but was back and forth with which path to take... With your recurrance, you have definitely been doing this for awhile... and you are 61? With diagnosis thri treatment and recovery it will be a little over a year of my life (diagnosed last Nov 12) and having my stage 2 for the flap surgeries Nov 14, 2011... and a week of recovery (God willing)... so I am hoping by 2012 I will be wel on my way to normal... my new normal, but normal nonetheless (and a little tattooing).
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Michelle, I know how you feel. But with the recurrence, you have been going longer than most for sure. I started at the very end of Feb, will be through rads mid November, then still continuing on Herceptin every three weeks unil the end of May and having nipple and whatever else might need to be done for revisions probably in May also. At the start, I had no idea the treatment was going to be so l o n g. It is wonderful that your family has been so supportive and available for you. My DH has been to most things with me, luckily he works at the hospital I am getting treated at so he can usually come over and be with me without having to take the day off. But my oldest is in school in Minnesota and the other two are a little young, but are doing more for themselves out of necessity. My sisters would help, but both have a lot on their plates right now themselves. I don't think you'd need a whole lot of time with the DIEP though. My DH was only off the first 5 days I was home from the hospital and it worked out okay. We made sure there was food that was easy to get. Other than that, company would have been nice, but I was okay on my own.
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My DH took off three weeks to be with me after DIEP, but one of those weeks was already-scheduled vacation time. I was in the hospital four days, and while he sat every day with me, it wasn't strictly necessary. I did need him for help in getting out of bed for the first few days after I was discharged to home, but thinking about it, we could have gotten by with him taking the day of surgery (and as it turns out the next day, since my surgery ended up being 20 hours long!) and three or four days the following week after discharge. As soon as I could get out of bed without assistance, I was on the move .... Slowly with lots of rest stops, but I could have fended for myself if I'd had to.
L -
I agree... I was in the hospital, alone, then a hotel with a friend for a couple of days (total of 8 nights or so), travelled home and at that point was alone... had friends bring dinner over every other night... made sure plates, towels, food were within a reachable distance and not high up... I did all my shower stuff myself starting at about day 5. You will mostly just be taking it easy. Do undertstand I had a lot of surgery this summer and by the time I had my DIEP, my husband had no more vacation days... and I ended up in NOLA without warning for the DIEP... so its not that noone offered to come be with me in NOLA,I just didn't need it until it was time to come home.
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Kay - thanks so much, it is long under the best of circumstances! At my consultation, I was told I'd have six weeks of recovery which would include lifting no more than five pounds. That means no laundry, no grocery bags, no cast iron frying pans (lol), etc. Five pounds is pretty limiting. I know it's all just part of the deal. And I am probably still going to do it, if I can survive these TEs for another 9 months. I think I am just 'tired' of the whole thing and I need a break. I'm sure I'll feel better after the trip to Florida ... in just 9 days, actually!
And I might be having a bit of 'scanxiety' - happening on Tuesday. And my CA27.29 went up 10 points while I was doing Taxol - that was an unexpected disappointment. (And I know they can give false positives, but mine have always been indicative of what's going on). And a consult with the head of Radiation Oncology at Dana Farber on Friday because my case is so damn complicated.
I'd just like to have something be routine, for a change! And I feel a bit cheated because I should have had this DIEP done at the time of my BMX, then none of this would be an issue. The PS came highly recommended by my BS who is fabulous and a friend of mine who is a 3-time survivor. I should have taken one more week and talked to another PS in the area, but the choices were limited and time was not on my side in my particular situation.
If my PET is clear, I have another date with a surgeon to have my port removed. Another DH commitment.
Sometimes it all just seems never-ending!
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((((((((hugs))))))))) Michelle. Sending positive vibes for good scan results.
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luvrving-- for what it's worth, because i was going to have chemo & rads, my ps encouraged me to wait for reconstruction. we talked about my goals, which was to have the best cosmetic result possible, and least risk of infection. he told me he has seen less infections/complications with waiting for the mx to heal, and the skin to heal from rads, in cases like mine with radical mx, by waiting.
although part of me wanted to get it all done with at once, the reality is there is more than one surgery involved anyway. and i am so very glad i took his advice. it was a year after chemo & rad before i had my diep. my skin had recovered from the burns, and he did an excellant job. i just had stage 2 yesterday & feel great. another advantage of the delay is that i was in a better place emotionally, and was not in such a panic to get it done. i was able to really communicate with him about what i wanted, and he was so good about explaining our options, & the risks.
from reading the posts of my 'sisters' who had mx the same time as i did, there has been a real shift from their elation of having immediate tissue expander & implants, to numerous ones with complications & dissatisfaction over the way they look now, to the point several have had them removed. i am so happy with my diep, from the moment i woke up, it has felt like i have my old friend back. i never would have thought i could feel so 'whole' again.
as for your family, i am sure they ultimately want you whole & happy with whatever choice you make. don't be afraid to take the time to make the best decision for you--the one that will make you the happiest in the long run. for me, spending a year with the prosthesis was worth it.
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LuvRVing, I am in Florida. What part will you be visiting? I am in the northern panhandle (Panama City) and the weather is BEAUTIFUL here right now. It was in the low 80's today and in the 60's tonight. I love this time of year.
I don't know if you are open to one more suggestion or not. One of the best things I did while making my decision is I called Dr. Kline at the Center for Natural Breast Reconstruction in Charleston, SC. I made a phone consultation with him and he spent almost an hour with me and my DH on the phone. I gave him the particulars of my case, emailed him my photos and he gave me the ups and downs of ALL options that were available to me. When we called him, my husband was absolutely against DIEP surgery. He felt like I, as well as my family, had been through enough this past year. When we finished the consultation, he told me to book the surgery. My experience was that Charleston is in network for many more insurance companies than NOLA. The fee that NOLA quoted me was out of the question. It was an amount that I simply could not pay. I had a wonderful experience with the surgery, the doctors and the hospital. I went back to work 12 days post op and have been 95% back to normal since probably week 3. Now, at 9 weeks post surgery, my scars are getting lighter and I actually have thoughts that don't involve my boobs!! Hooray!! To me, it's one more sign that I am returning to "normal". Chris, in Dr. Kline's office is very knowledgeable about the procedure before, during and after surgery. If you feel up to giving her a call, I know she would be happy to talk about your options.
Grdnslve, Amen Sista!! I too feel whole again. On another thread we were all discussing one side effect of DIEP surgery was becoming an exhibitionist. I am so happy to have two perky sisters that I want to show them to everyone!
Susan
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I had a stacked DIEP, uni-lateral delayed over a year and half past rads...Dr. Massey and Dr. Sullivan did mine. I had very good results...however, when I asked Dr. Massey how I would proceed if I developed BC in remaining breast, she said expander placed prior to rads if required ...
The DIEP surgery cleaned up some scar tissue and radiation damaged skin sort of fused to rib cage...feel like it improved my mild lymphedema also...
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Good news, I have been trying something a little different with my open incision & it is looking much better in just 5 days, so we will see what happens.
I am going back to work on the 17th, it is a short week so for only 3 days. The following week I will work 4 days & then go to the doctor on Friday. Hopefully she will like what she sees.
Then it's fulltime. At least this way I can build back up to it. I am ready to go back but know I am not a full strength yet & will need to pace myself. I am tired of sitting in my chair.
I am curious to discuss other options for stage II for the "good" foob
NJ -
Grdnslve - I already have TEs, so too late for the "delayed" reconstruction approach. I got them in early April when I had my BMX and my PS thought I didn't qualify for DIEP.
Susan - we will be in the West Palm Beach area, quite a ways from Panama City (which does have some spectacular beaches - been there!). My DH is completely supportive of my decision to have DIEP. I am the one who is worried about burning out the entire family. I had checked my plan and I don't believe Dr. Kline is in network. oWe may have more options in 2012 if we select a different health insurance option.
The bottom line is, if I must wait until after rads and I still want to go through with it, I'll have the procedure done in Boston. My DIEP surgeon teaches the procedure at Harvard Medical School. She and her partner perform two DIEPs a week. I am sure she is fully-competent.
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Hi all, 10 days post op from my UNI MX immed. DIEP, nipple sparing surgery. Feeling so much more like myself now and getting around easily. I've been off heavy pain meds for 2 1/2 days now, just taking Advil 600 mg. when I remember
I have been having an actual fun weekend with a girlfriend who wanted to stay with me while my DH went to Hawaii for 5 days. Believe me he needed it!! Ha ha. I was sched. to go with him but wanted to get the surgery over with and it was a lot of business for him so I didn't mind to much, although doesn't Maui sound a whole lot better than recovering from DIEP surgery??!!!! Oh well, we do have another trip planned for May when I'll probably have way more fun deciding what clothes to bring, & may actually like how I look in a swimsuit! My DH had been so supportive and loving before surgery, so there for me at the hospital in recovery, but then when he saw me the first few days after surgery at home and saw what my limitations were, he kinda hit a wall and became Mr. A..Hole, LOL. I was so glad to see him leave! I think he wanted to be so in control of everything and too helpful, then my family drove him crazy wanting to be helpful also and he couldn't step aside and let them or something! He is a rather sensitive guy, and I think when he doesn't have complete control over a situation he gets aggitated and moody. I believe he felt that I was going to be incapacitated for a long time, even though i told him i thought or hoped that I would be a fast healer and not have many complicatoins. How can you ever know how things will really turn out until you go thru with it. i spent so much time on this discussion board reading past posts and learned so much and so appreciative of all that my DIEP sisters have gone thru and shared. You all are the reason I chose this because I could see that this is so doable and a great option instead of implants. Yay, no implants!! I am looking forward to seeing my DH this evening when he comes home because I know he will be apologetic and loving again and will be absolutely amazed that he has his DW back and who doesn't look so needy or something 
Men are something else.....LOL Anyway, so to all of you out there who waiting for this surgery, don't be too afraid, OK? It is tough the 1st week, but i turned a corner the day I had my first post op visit 1 wk out and i woke up thinking i get to actually put some real clothes on today, maybe a little make up...go to lunch out with my mom after, if i'm up for it. And yes, it was fine riding in the car for the first time with my small pillow to cushion my chest and tummy from the seatbelt, walking to his office from the car a ways and knowing i had most of my glow back. My PS said i got my home run i'd wanted and was pleased how everything looked. i had 4 drains total, got one out before leaving hospital, PS removed 2 more at that visit and now i'm waiting to get this last hip drain out. It doesn't bother me much, isn't painful unless it gets tugged on to hard by something. it didn't hurt having the others removed, either even though they are in the skin about 8 inches! Yesterday i went for a walk around the block with my friend, deadheaded a bunch of flowers in the yard. Today we have plans to do an art studio tour with my sister, but i won't push that either, since i don't want to over do. Good luck everyone!! -
likalaw50: Sounds like you are doing great! so glad things went well for you.
My husband went a little nuts just after my surgery as well, something about seeing me SO out of commission and not a lot he could do about it; he got very a-hole-like! Once he recovered and realized how he acted, he had a ton of remorse and the whole experience has helped us grow even closer.
Each day post-op, we feel more and more like ourselves and in some ways, better and feeling a huge sense of accomplishment having faced some challenges as well as fear and come out stronger on the other side and able to offer support to others.
kathy
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Kathy, thanks. I do know my DH and i will be fine after a few days of him being back home now. He's already acting a bit remorseful and we are going to discuss stuff today. I also had stress one week after surgery with an unstable sister that wanted to be supportive in her own bizarre way. i should have realized she may react towards me in a bad way after surgery and I'm kicking myself now that i allowed her to stay for a couple days while DH was gone. This BC and surgery experience has given me a greater inner strength I don't feel i had before, because even though I was drugged up on pain killers I stood up for my mom and I and asked her to leave after much venting on her part. I'd asked and then told her to leave a few times and she resisted, so I threatened to call the cops! Other family members are shocked all this occurred after my surgery and are proud that i stood up to her. Life is short, i've learned we need to surround ourselves with loving, supportive people in our healing process and beyond, and strive to keep negativity to a minimum!
Liane
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I had some interesting dynamics with other family members but got real clear on what I needed to do in order to take care of myself. I had a situation where I called in outside help and was ready to dial 911 if necessary.
My DH spent a lot of time working out what happened and I requested he see a counselor before my stage 2 in order to make sure we didn't have a repeat (it got progressively worse surgery to surgery); that helped a lot.
Good on you for standing up, pain meds and all! My DH tried to blame things on my pain meds . . .LOL . . .that was actually pretty funny; his attempt to justify his behavior; we all knew he just plain lost his mind!
BC does clarify our priorities, doesn't it!
Kathy
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I have a question to those of you who have had the DIEP. I am having a lot of muscle pain along the sternum. I know she said she took a little bit of bone out there but it has been 2 months & I am still having a lot of pain. Any thoughts? NJ
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Norma June, I think we had our DIEP's the same day (aug 17?), but I am not having any more pain from it. I did not have any bone out though. That would probably take quite a while to heal and feel better.
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Thanks Kay, that is kind of what I was thinking. It will be better & then I do certain things & it really hurts a lot. I guess between my arthritis & the changes have the area really irritated. I know It took quite awhile for my bone marrow biopsy to stop hurting so i am guessing this will be similar. It's just frustrating to be doing so well but have to deal with this pain. But thanks for your reponse it really does help my peace of mind. NJ
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NJ... i think everyone gets a rib resection... it is how they access the blood... I know I had it and barely had any pain, so I would ask your doctor for sure.
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So funny, I totally forgot about the rib resection. I haven't had any pain in my sternum area, and also had my DIEP on Aug 17 (must've been the day for it!!) -
My DIEP surgery report says "Left and right partial 3rd rib resections, cartilage only." I had no problem with post-surgery pain in that area. @NJ - bring your problem with pain to your docs attention. Don't wait. It could be something he/she can fix.
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@ Kathy, glad you too stuck up for yourself! Kudos for us strong women!
Yay, can't wait to get last hip drain out tomorrow and last day on antibiotics....getting closer to being more normal! (2 weeks now post op unimx immed. DIEP)
Even though I usually pinned the drains to an undergarment, I found it helpful to put the drains in footie socks, which humorously looks like lucky rabbit feet hanging off of me, but so nice to get those awful drains off my tightened, sensitive skin of my tummy! Course, whenever I had a chance I was hiding them when I was in public.
I had a pretty loose tummy from pregnancies, which my PS luckily said he tightened up for me like a tummy tuck, but now I have these pleats, gathers, or puckery places on the top of the incision where it meets the bottom skin, esp. towards the hip areas. I have my 2nd dr. appt. tomorrow, so will ask him if he expects the skin to smooth up on it's own or if that will need attention in a Stage 2 surg. Just wondering if anyone experienced a 'pie crust' incision, ha ha.
Also, it's such a weird feeling in my 'noob' sometimes, prickly, achy, and sharper pains at times and then lots of numbness on the outside of it. I'm a 'C' cup and this one is now bigger than my other because of lots of swelling, so it's really heavy and when I walk for awhile it feels so leaden and then hurts. I find that I want to support it with my arm somehow but my PS is one that won't allow any type of bra or camisole for 6 weeks, ugh.
Diagnosis: 5/2/2011, DCIS, 6cm+, Stage 0, Grade 3, 0/7 nodes, ER+/PR+, HER2-
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Hi All,
Haven't been on the boards in a while as I took the summer off and just had fun with my family.
Last year at this time I was getting boobs off (October 15); tomorrow (Oct 13), I'm getting them back on. When I had my pre-op tests, my PS looked at my CT scan results and told me I had great anatomy. That's a new line for me!
At any rate, doing okay when I don't think about it, but the kids are with grandma right now and I've got a lot of time to think. Ugh!! At least tomorrow I'll wake up without tissue expanders!
Sandy
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Sandy... I don't know where you are or who you are with, but its not a bad surgery... you have already had the major part in my opinion,,, the first week, just stay ahead of the pain, and you will be all good... I am now 7 weeks post DIEP, can do most things... probably wouldn't golf right now, but am otherwise good... so hang in there, and it will be great!!
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Thanks, Betsy. I'm actually in Denver with Williams & Williams. They've done about 300 or so and are the only docs in Denver to do the surgery. I didn't want to travel as I have two little ones, and I have a lot of faith in Dr. Chris, so I'm happy with that. Just looking foward to getting it done!!
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Thanks, Betsy, GG & C8ndygr1, I have talked to my ps about it but could try discussing it again. I am probably just more sensitive. First becaue I have arthritis. Second because they radiated my sternum. The pain kind of depends on what I do. If I don't do much, not so much pain. If I do a lot, drive or anything that uses the pecs I have more pain. Thanks for your replies. NJ
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Hang in there Norma June, it will get better. I am just doing radiation now. PS never mentioned anything about doing anything to the sternum. I don't know, I guess if you all say so she did, but I never felt anything there. Now counting the time until I can get a nipple (six months after I finish rads which will be mid November, so a LONG time from now). I am somewhat surprised how many of you say you are so happy with how you look. I think my noob matches my boob (had a Uni MX) and the shape seems to be right, but I really the big circle scar where my nipple used to be. Did all of you who are pleased with your look not have your nipple removed? In clothes I am very happy with how I look, but I hate looking at my Frankenstein noob. I am hopeful the scar will fade as time goes on (now 8 weeks post DIEP) or when be hidden when I get a nipple.
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Kay I am sure the scares will fad and once you get nips and areola tats you will feel better about looking at them. I have not had mine yet but my lump scar I was not happy with at all because of the location and you can see it with my bathing suit. Now a year later it is hardly visibly and I am just sensitive about it. I am not keeping my nips either and have wondered how I am going to feel during the interim time. I may just have to not look it the mirror until it is all done.
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