DIEP Flap Reconstruction 2016
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Simplicity glad you had a good appointment and that your surgeon is happy with the progress. Saw a colouring book add today in the paper and it made me think of you.
Katiebird- Im starting my 4th week now and the incisions are really not bothering me at all, they look better every day. I know what you mean though, I was alway trying to imagine what it was going to look like when it was done. Then one day I was looking at my incision I had for a couple other surgeries and realized I could hardly find the incisions... so I hope one day these will be the same. I talked to all my dr's and I have a few now lol, one good thing about cancer I guess. They all said there was no reason for me to have a bilateral. I did have a lump show up this year but it turned out to be nothing. I decided to take there advice and go with the uni. I had my mastectomy in mar 2014 followed my chemo, radiation, then on june 6 2016 I had my reconstruction. Im happy with my decision to only do the one side and feel if something happens and the cancer returns I will deal with it then. I can't live my life thinking what if, or I will never be able to move on. After my mastectomy and my reconstruction I was up and moving the next day. Although I was pretty bent over after the reconstruction. I'm standing pretty straight now although by the end of the day Im a little sore from moving muscles that have been doing nothing for three weeks. For me surgery was better then I expected it to be. Never really could say I was in any pain more or less just sore. My gallbladder surgery was more pain for me. But everyone is different. Hope that helps.
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I agree with you Grateful. A prophylactic mx was not offered or discussed with me. When I brought it up to my BS, she said she would not consider it. I am also in Canada, so I have to wonder if this option is dependent on the individual BS, or if it is policy. If it is policy, it seems to be regionally dictated (I am in Vancouver). This has been my primary concern since the DIEP. If it is in the left (good) breast, I will have limited options. My pathology landed smack on the borderline for all staging criteria (almost bigger than 5cm at 4.5, micro cells in 2/3 nodes considered insignificant, rather than 0/3 nodes, oncotype score 27 (would have been given chemo if 28), multi-focal (in all quadrants of the breast) and the mx margins were only 'adequate' at 0.05cm (but they did not do radiation). I think the only 'good' thing is that if it comes back, I will be able to have radiation because it wasn't done yet. I don't dwell on it, but it is an underlying stress.
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Thanks taag4, that does help. I, too, had gallbladder surgery and can remember being in a lot of pain. I hope your attitude is contagious because I do not want to live thinking "what if?" everyday. Someone just told me today that having physical therapy after surgery and healing really helped. Anyone have PT? She said it helped her with exercises to re-route the fluid in her arms, which is another concern of mine. Is lymphadema always associated with removal of the lymph nodes? Is there anything that can be done before surgery to prevent it?
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hi Katiebird I had rads after, and my PS is very happy how well my Diep breast tolerated it -- a bit higher is the only change so far [4 months after] and my recommendation was a slower gentler radiation route I did 28 treatments at 1.8 gr each , instead of the faster 16 more intense treatments.
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Pittsburgh, I have a friend who had bilateral DIEP with Dr Gimble in Pittsburgh at UPMC. She highly recommends him and I plan to seek his opinion in the next few months.
My current surgeon is Michael White. I LOVE him. But he practices at Allegheny General. after recent experiences, I'm uncertain about going there for anything requiring hospital stay.
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katiebird- I have lymphedema i got it about a year after my mastectomy. Dr's really don't know a lot about it, so all I can say is if something doesn't feel right get it checked out. I was persistent in having my arm checked out. I thought I had another blood clot so I wasn't letting them just brush me off. Turned out to be lymphedema, I caught it early so I don't have major swelling. I wear a sleeve and a gauntlet and have compression shirts and a swell spot. They will tell you there is nothing you can do to prevent it, and I don't think there would have been anything I could have done. I have alway been a very active person. I love my yoga was trying to run, and was on a swim team. It just hit me one day when I was going for a walk. I had 15 nodes removed but I know people that have had more taken and they don't have it. It was just the luck of the draw. One thing I would do is not let anyone take blood or blood pressure or anything to do with your arm on your surgery side. The less done to your arm the better. Make sure your arm and hand is free from cuts sunburn and anything else that could draw extra fluid to your arm. I had skin cancer on my shoulder and had to have it removed, I wonder if that is what set it off.
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Grateful was right--the DIEP is a one shot deal. Once you do the DIEP on one side, you can't come back later and do the other. However, there are other donor sites that can be used for a second breast down the road, so it isn't like you have no options in the future.
Whether to do one side or both is a very personal decision. Since I am BRCA2 positive, it was an easy decision for me to take both. But others may not have as much risk for the second breast, so a uni can be a good choice. Work that out with your doctors and family.
Pittsburgh, docs who don't do the DIEP often don't recommend it. My original plastic surgeon who did buy implants was not happy that I opted for the DIEP--he wanted me to get a lat flap. I was very uncomfortable with the idea of moving muscle and the other issues with a lat flap--you still have to have implants! I read through ALL the posts in the 2014 and 2015 DIEP threads on this forum and discovered that 100% of those women were happy with their choice, even when there were complications. That cemented my choice.
I had to travel 1.5 hours to find a facility that does DIEP. I know other women have traveled further. So, if you can't find anyone you trust in Pittsburgh, you can always travel to another city provided your insurance pays for it. I know Penn State is excellent! (That is where my doc did his fellowship.) But I would think there would be something in Pittsburgh?
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Pittsburgh....I traveled to Charleston, SC for all 3 stages of my bilateral DIEP. Dr Marga Massey was my surgeon.One of the best anywhere.
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taag4, thanks for the response and advice for things to look out for! Your resiliency is obvious and inspiring!
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cedee, thanks for the link to the article. Good information to have in my back pocket!
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Has anyone had the skin-sparing option with their DIEP?
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Hello Katiebird,. I had my BMX w/ immediate DIEP with the skin sparring last week. I am 8 days out.😃.
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i did. It is pretty cool what they can do. However, if u had a lx prior, u will get the lx scar on the new boob.
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Katiebird-I had the skin sparing too. I did the bilateral as I didn't want to wait for the other shoe to drop as I'm only 40 yrs old. I chose not to save the nipples, but did skin sparing and only have the abdominal incision of course, and incisions about the size of my original areola area for both breasts. My surgery was 6/15, so I'm just past 2 weeks out. The surgery found cancer in 1 of 3 nodes, so I'm in the planning process for radiation now that I hadn't counted on. PS says the DIEP breast usually tolerates radiation very well. Here's hoping!!
Good luck with your surgery! You got this!
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Cincinnatimom41 and donnar25, thanks for letting me know about your skin sparing DIEP. I'm strongly considering this option. How was the surgery? Tolerable? How is your recovery going? How about the healing of your abdominal incision? Any words of advice as I try to make my surgery decisions? Will either of you plan to have a nipple reconstructed? I just talked to a friend with a family member who had this done and regretted it because the nipple always stayed hard :-( May be good for some, but I don't want the high beams on all the time:-)
I love this forum, I feel like you all offer such valuable information that the medical professionals can't give me!
Best Wishes for those of you in the healing process-speedy recovery to all
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stellamaris, were you pleased with the results?
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very interested in hearing about the nipple never thought about it being hard all the time. good questions for my ps at my next appointment.
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Morning ladies.
Been in training last 3 days for a certification. Ugh. Wore me slap out. But I know have a bit of back up in the event I lose my current job due to this past year
Recovery isn't going good. Honey has worked in the smaller areas. I haven't tried it in the abdominal separation and probably won't. The saline solution seems to be doing great so no reason to change it. Been playing with a fever past 2 days. 100.4. Goes down with ibuprofen. Dr doesnt seem concerned. I have no other symptoms. May just be doing too much but damnit, I am 6 weeks out! Ugh
Hope all others are doing ok. Grateful? how is your abdomen? Mine has been seriously draining
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Simplicity - my wife's abdominal incision "spot" is nowhere near as big or open as yours, but like you it just seems to be staying around the same place...has the yellow "goo" and she keeps changing bandages, etc. For the longest all we saw was the goo, but we can now see a tiny hole as well. We THINK it may be getting better, but it sure is a slow process. Fortunately, no other spots have opened up. She is 5 weeks out from her DIEP surgery today. Honestly, if this spot were healed up she would seem to be on a normal recovery. Ah well, it is what it is (p.s. about to read the "honey" links you posted).
Katiebird - (first, I'm the husband here in case that wasn't clear from above). I can see you have a million questions (as does everyone on this journey). We found there are so dang many variations on all of this, it can make it very hard to "compare" woman A to woman B. So, it looks like you had neoadjuvant chemo (i.e. before your "cancer" surgery - mastectomy or lumpectomy - as opposed to after). My wife's path was:
- Double Mastectomy with immediate implant of tissue expanders (note: there were 2 lumps in one breast)
- Chemo
- Radiation
- DIEP flap surgery (we are 5 weeks out from the surgery)
With regard to single vs. double mastectomy, once we went from lumpectomy to mastectomy (which seemed like a big leap), suddenly going to a double mastectomy didn't seem so big. The breast surgeon said statistically there was no greater chance of recurrence and we could keep the other breast. She noted, however, that many women do it to have a more similar cosmetic result between the two. We know the "stats", but it didn't help that we know women with recurrence in the "other breast". I suspect you are already leaning one direction or the other and ultimately it is up to you. The journey is a long one, and a lot of women just don't want to mess with all this again - my wife was definitely in that camp. I will say that your own sexuality comes into play a bit here to. You likely won't have feeling in a reconstructed breast, and if you do it may not be at the same level. If that's important to you (for at least the one remaining breast) then that's another consideration.
As to reconstruction, when we did our original research we would hear of (and even knew personally) women who had their DIEP flap at the time of the mastectomy. We were confused as to why we weren't really given that option. In the end, I think both our oncologist and PS (perhaps by proxy) sort of suspected we would end up having radiation and radiating the new tissue wasn't going to be ideal. Tissue expanders sort of leave the door open for either option (i.e. implants or tissue transfer). They also allow the breast area to heal a bit from the mastectomy. My wife was expanded fully BEFORE she started her radiation (they did some of the expanding before she started chemo and the rest between chemo and rads). I think that would have been key if she had gone the implant route and undoubtedly helped with her DIEP as well since there was more "stretched skin" to re-use. My wife's breast area scars look like this:
-O- -O-
The dashed lines were from the original mastectomy - a patch of circular skin is no in-between them. So, having said all that, it doesn't appear you are getting radiation, BUT if that's a possibility, I would suggest a similar route to what my wife did (go with expanders at the time of mastectomy). if radiation is unlikely then the best cosmetic result seems to be from DIEP at the time of mastectomy. As to DIEP vs. implants, radiation comes into play there too as implants are just more prone to issues (capsular contracture) in radiated breasts (you are seeing how radiation is a big driver from the physician's perspective here). My wife does like the more natural feel of her DIEP breast (of course anything is better than the two tupperware bowls that are tissue expanders). Finally, with regard to your belly fat, well...I'm sure there is a McDonald's close to help with that...I recommend the McRib (if it's back).
Sorry for the novel length write-up!
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cabland, I'm sorry you have had to become such an expert on the topic but I'm sure your wife is grateful for your level of understanding
I am taking notes on everyone's responses so I can lay out all the pros and cons and arm myself with a lot of questions for my doctors when I go in for my next appt. Your explanation does help because my BS feels strongly that I will need radiation later. Decisions, decisions!
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Katiebird - yes, very, very happy with the DIEP results. The lx scar is starting to fade. Please note that i had 3 lx in the same place, because we were trying to get clear margins. It didn't work, but that is why the lx scar is fading slowly, i think. the scar where they did the SN has all but disappeared, so the skin sparing should work better for you.
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I also happy with my DIEP. It would have been better if I had immediate recon instead of delayed, but my original PS did not think I was a candidate for DIEP because I am kind of slim. Nether the less, I am so happy I did this.
I was terrified of the big abdominal incision, but it has turned out to not be a big deal.
I got nipples in April. They are pretty small and just raised above the skin. They give me just a little nubbin when I got bra-less, making me feel sexy! They can also visually recreate 3-D nipples with tattoos. I plan to see Vinnie in ND for mine. After all of this, I am not letting any old person do my final tats!
And as for sexuality, things are still hot in the bedroom. Some snsation returned over time. At present, having my DIEP girls makes all the difference. My husband has had to wrap his brain around them, but it hasn't been a huge issue. I thought it would be, but it is not. Phew
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Katie
I had BMX with immediate skin sparing DIEP 3 years ago. My BS said that she always saves skin whenever possible. That is usually the case when the tumor does not near the skin or the skin has not been damaged from too much radiation. I did not keep the nipples. My previous LX scar was in the areola. I had chemo after the lx when they discovered the tumors in 2 nodes. I did not have to have radiation because of the size of the tumors and the margins. If I had not decided to have BMX, I probably would have had radiation as an extra precaution.
Good luck on journey.
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Hi Katiebird- I have thought about the nipple reconstruction, but haven't fully decided yet on which way to go. I don't like the idea of having the high beams on all the time either. But on the other hand, my hubby's ex had breast cancer and had a tattooed nipple that he said just didn't look right. She didn't use Vinny of course, and was left with using the tattoo artist the PS center provided. I don't currently have any tattoo's, but have given some thought to getting some very tasteful Hawaiian looking flowers or something. My hubby likes that idea and says he is happy with whatever I decide. I've liked going out of the house and to appointments with no bra on:) Kind of freeing to have no nipples at the moment!
I'm 2 weeks and 2 days out from surgery. The actual surgery day is really just a blur now. No pain when I awoke and the nurses were on top of any requests I had. The worst part was the day after surgery when they removed the catheter and I had to start going to the bathroom, with assistance of course. But I had the feeling I would split the tummy incision getting out of bed and trying to get on the toilet. By the 3rd day I was more comfortable doing that and took my first walk down the hall. The first walk was very tiring, but each day got measurably easier. And it wasn't hard because of pain, because I describe the way I've felt since the surgery as more uncomfortable, not striking pain or anything. I have been extra careful with the tummy incision because of small burning sensations I get when I stretch a little to far.. And I really don't want it to open up anywhere! I do have nerve pain on the top of my reconstructed breasts and under my arms, especially the side the lymph nodes were removed from. That feels more like a burning of the skin sensation, prickly burning. I'm hoping this will go away, but again, just annoying. I was actually surprised to have as much feeling as I do on the DIEP breasts.. I was fully prepared to not have any sensation.
Each day gets better, and I don't regret doing the DIEP, nor do I regret getting the double MX vs. a single. Everyone that has seen them and my tummy have commented on how great they look! Not to mention I have quite the flat tummy now to go with my probably D to DD size foobs! I believe I made a very good decision for me, and I'm sure you'll make the best decision for you too:)
I hope all you ladies continue to heal well, and for those of you having healing issues I've been watching your progress here and you've been in my prayers
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My nine week update post DIEP. The abdominal incision is healing nicely, but I'm not touching it, or letting anyone else touch it, just changing the dressing every day after a shower. Keeping my fingers crossed that it will continue to do so. My last check up on Monday was good.
I am on holidays now (it's always a holiday when you're retired) and went for a walk on the beach yesterday and enjoyed dipping my feet in the sea. Not allowed to swim yet and I think I'll find this very difficult as the water is like bath. Tried to do some cleaning today and was exhausted after an hour so hired a young girl to help me. Much better. Rested in the hammock instead.
Wishing the rest of you good healing and sending prayers your way.
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grateful glad things are healing nicely and I hope they will continue to do so. Glad you talked about your energy level. Im just going on my fourth week now and my energy still seems to be at a all time low. Try to do some walking everyday around 6000 steps but anything else is a no go. Just to tired. Makes me feel better hearing I might be expecting too much. Thanks for the post.
Hope everyone is having a great day! Happy healing!
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Hi all!!! I am so happy to find these posts! I had a double mastectomy in Nov. 2015 and did the DIEP Flap reconstruction at the same time. Unfortunately the cancer was worse than originally thought so I had to do chemo and radiation after. Has anyone else had chemo and radiation after reconstruction? The breast that received the radiation is "firmed" up compared to the other one. I also developed a pretty bad seroma in my abdomen and am having a second surgery to correct that and take care of the "dog flaps". Anyone else had those issues with their surgery? What about the scarring? When does it start to fade? Parts of my scar look pretty good, other parts are still raised and red.
I'd love to hear about others success with their surgery.
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Hi all, I had a skin-sparing, nipple-sparing BMX with TE in July of 2015. I had my DIEP phase one on February 18, and phase two is on July 21st. My headlights are not always on! They act just like any other old nipples! I know this isn't the case for everyone with nipple sparing, but it is for me. I'm very happy I did the sparing- it made it easier for me to mentally deal with my BMX before the TE were inflated!
I saw several surgeons before deciding on one. I hadn't decided whether to do implants or DIEP, and wanted to review my options. I can tell you that they all said NOT to do an immediate DIEP recon after BMX. So, if you are considering that, please weigh it thoughtfully. Their rationale was that if I had to have radiation, the rx to the DIEP flap could damage it. I wouldn't be able to fall back on DIEP flap. Dr. Momoh at University of Michigan follows a protocol of doing immediate recon. While I LOVED the idea of only one recovery, and the appearance looked great, I just didn't want to chance it.
Jena
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Oh--- use silicone strips on your scars. They do amazing things!
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Hi Jstacey
How long did it take before you saw results with silcone strips? Thanks!
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