2018 DIEP Surgery
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cnewmom- sounds like you’re trying to choose between lumpectomy + rads or mx with DIEP recon, correct? I did mx with immediate DIEP and do not regret it one bit. In fact I look better now than I did when this journey started and I looked pretty darn good then. I’m thrilled with my results and would recommend DIEP to anyone. However it’s not all been peaches and cream. In my opinion it was all worth it though.
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Hi everyone! I’ve been swamped busy with work so haven’t been on here in a little while. I keep checking in because I can’t wait to hear experiences of those going through stage 2. I’m trying to change my surgeon from the one who did my initial surgery to one that is out of network. My initial surgeon, when asked about whether he could make mine match each other, said, “No one’s natural breasts are the same size.” (Not very comforting). Dr. Leif Rogers, on the other hand, said “Oh absolutely I can make them match! I can get them more even than natural breasts!” (VERY COMFORTING!). Now I hope I can afford him. : / Anyone else have Stage 2 stories
Wishing everyone the best who are going to be going into this. It’s not as scary as it looks!!
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to cyberCathy: I know you have already started the process and I wish I had seen your questions earlier. I was in the hospital for 4 nights/5 days. Went off the pump by day 3 and switched to oral meds. I realized I was getting less pain relief from those than just taking Tylenol and muscle relaxers, and an occasional Xanax. I took oral pain meds for two days out of the hospital. I had really bad sternum pain and I had no idea why mine was so bad. Luckily the women on here told me that they sometines have to cut through cartiahe and whatever is in the way of attaching the blood vessels underneath your sternum. (My doctor never said a word no matter how many times I told his assistant the amount of pain I had). I asked for my surgical report and found out that is exactly what was causing my pain. But by week 4, that pain was gone. Your PS said you were having one of many surgeries? Wow! That means he really cares about giving you the best results! Because my breasts look like they should be on two totally different bodies, and my PS didn’t seem too concerned about them matching (read my previous post)...i’m trying to change change surgeons. I a man practically begging my initial guy to do fat grafting. The other PS said he would do one, maybe two fat grafting surgeries, depending on how’ve much my body re-absorbs the fat.
As far as nipple reconstruction...you don’t have to do that. I chose not to since I will have no sensation anyway. The 3D nipple tattoos look very real! I would rather not have to wear a bra when I’m done with all of this.
I had an implant after my last flap. I had an infection and I hated it. I had my implant for over 10 years. I’m SO glad I don’t have one now. I just feel better knowing mine are all me. I do come from the land of breast implants (los angeles). I’m not against them if you need them. It just seems like, from these boards, that I see more problems for women who chose implants than with DIEP.
You should be getting out of the hospital any day now. Can I suggest ordering a “grabber” off of Amazon? (I posted a link earlier). It REALLY helped me be more independent right away when you can’t lift your arms. I also had a button that turned my light on and off next to my bed. It’s under $20 on Amazon, and you just plug it into the outlet and your light’s plug then plugs into that. You’ll never have to reach up to turn it on and off!
Also, I could not get myself to walk hunched over. It hurt my back too much. I was walking upright in less than a week and my incisions are healing beautifully.
Good luck to you! It’s not as bad as you think it will be!!
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To Cnewcom:
DIEP or Rads? I say get your rads done and THEN do your DIEP. In case your breast tissue gets damaged, they will replace that tissue when they do the DIEP. If you do your DIEP first and then have rads, I’m not sure how they would then replace the tissue. Your skin can also shrink from the rads and your new DIEP breast can look misshapen. I would wait and do your rads first. I would want to know that I got rid of any stray cancer cells anyway!! I did a MX on both sides (once year apart), but I did rads on my cancer breast (left side). 10 years later I’m doing my reconstruction. You’ve got time!!
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Sorry Donnawalk, not sure how to help you with that. Are you sure you’re on the correct forum?
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I’ve seen quite a few “new posters” asking kinda strange questions all over the boards today, 15 from one poster alone. Not sure what the intent is but I’m always concerned it’s spam. The other ones I’ve seen today have links though. Just kinda weird:/
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me too. I think one of them is desperately trying to make a decision lumpectomy vs mastectomy and looking for someone, anyone who is at least 10 years out from lumpectomy with no recurrence.
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Maybe so, but 14-15 posts on different threads in less than an hour and some of the links were for testing and they had prices and such. Maybe legit but..
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TWills, Yes I thought that very odd as well. I'm glad someone else saw it, I thought I was seeing things.
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Going in for abdominal flap surgery tomorrow. Had my right side, skin and nipple sparing mastectomy Mar 2nd, so this is pretty fast. I had 3 fills on my TE over the past month. They will also be doing a cosmetic lift on the left side so they match better afterwards. I'm looking forward to making progress toward getting to a "new normal"
I'm not too excited about having to start over with the healing process when it feels like I just got back to feeling good a couple of weeks ago! It's all part of this giant roller coaster though.
I've had 3 previous abdominal surgeries. Two C-sections and one hysterectomy last year. So, I do know what I'm in for to a degree. I did have a CT scan last week on abdominal blood flow. All looked good apparently.
Thanks to advice on this board, I bought a power recliner for recovery from this surgery. I've been told 4-5 days in the hospital. Seems like a lot since a C-section is only 3 days! I appreciate everyone who posts about their experiences. It makes it so much better having an idea of what to expect. I will do my best to post in a few days about how it goes for me!
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jsm22- time in the hospital sees to vary widely. I went home after two nights, others were in much longer. I’d go with what your PS is predicting.
Good luck
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Good luck tomorrow, jsm! The good news is compared to the other abdominal surgeries you’ve had they won’t be cutting through any muscle!
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Hi! Found this this morning and read through all your comments. I am having DIEP done on 5/2, at the same time as my Bilateral Mastectomy. I was dx with Triple Neg Infiltrating Ductal Carcinome in 10/17. 16 rounds of chemo completed on 3/30. BRCA1 positive. I’ll be 50 on 5/21. Dr. Sean Boutros doing the reconstruction. Pre op appointment tomorrow, y’all gave me some great questions to ask. I just wanted to get set up here, so if I have more questions after tomorrow, I can jump on and ask. Thanks, I’m starting to get a little jumpy about all this but after reading here, it’s helped quite some of the noise.
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Good luck Finn21 and jsm22! I'm new to this thread as well, had immediate DIEP reconstruction with a UMX on Feb 5. It is definitely a major surgery, but I am happy with my path so far. (I had never had any surgery at all either, so maybe more of a surprise.) I went home on day 5. Took opiod painkillers for a couple of weeks, tapered them down without issue. I got my 3 drains out after 1 week which made a huge difference in being able to move around and be more comfortable (and I have a 5 year old and 2 year old and feared them yanking on them accidentally). I also used a pillow with armrests in bed to rest and sleep for several weeks, helped keep me straight and a little upright. I took short walks every day once I was home from the hospital, worked up to 30-45min 2x/day, had to do a little less once I was off opiods for a bit and now am starting to do some short bouts of cycling, but I do think the walking helps a lot with healing.
I'm also curious about what to expect for the "revision" operations -- earliest I could do is this fall as I'm in 6 months of chemo till then. My reconstructed breast is a little bigger than my natural (natural maybe a big C/small D, reconstructed a big D/small DD) and at my size smaller is better. Nipple had cancer so now I have a big circle of belly skin rather than a nipple, but I'm finding myself not particularly bothered by that. I'd be curious to hear about people choosing tattoos.
For me, starting physical therapy at 4 weeks post-op and then being diligent about doing what they recommend was helpful. My arm mobility has come a tremendous way and now we are working on strength. A lot of my post-operative discomfort also turned out to be related to tight fascia, which the PT released. Tremendously helpful! Belly tightness can also be a drag, PT has given some stretches for that which are helping. (Belly tightness sounds like much less of a sensation than it is.) I'm 41 and was in good shape going into cancer, hoping to be able to eventually return to an active exercise life including strength training etc., but trying to be patient with the road to get there.
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Jsm22, We’ll all be rooting for you! The 5 days in the hospital for me seemed to focus on making sure the blood flow to the new breasts was all good, I think that’s usually the main focus. Good luck!
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Thank you! I was pretty active prior to cancer dx, but the last 4.5 months I've been on the couch thanks to feeling like death from chemo. I'm weak as a kitten and really worry about my strength after this big surgery. I mean, I change loads of laundry or empty the dishwasher and need a nap. My plastic sx says most his patients go home the next day, which is surprising after reading some of these comments. I saw someone else, who had Dr. Boutros, Mommagin?You bring up PT and I'm wondering about all that myself. So many questions, but I know for me, delaying reconstruction is NOT the way to go. I've been a D/DD since I was 14, even though I feel like a fluffy sloth, plastic dr says we will be lucky to be mid B. While I've always entertained the idea of a reduction, this is a little smaller than I had wanted to be. Being a runner, we ruled out implants and stacked DIEP. Part of me wants to keep reading for more questions and the other part feels like I'm just adding confusion. What to do, what to do
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Scubamom24, wishing you lots of luck tomorrow, cheering you on and hoping for a comfortable recovery!
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Twills, thank you for the thoughts -- I should have posted (I thought I did...) but they rescheduled me to 4/30 so the chief of surgery could join my PS. So, I guess that's a good thing except now more time to wait and be anxious! I'm making the best of it, using this forum and other sources to learn more and I am truly grateful for the good information here, especially. I am curious why Finn's PS ruled out stacked DIEP since she was a runner - I'm very active/run/yoga etc., but it was not brought up. Perhaps because I'm a B now and I'll end up an A, so it may not be an issue!
I was really inspired by all the runners in Boston today who made it through a horrid rainy, cold and windy day -- especially those everyday folks who hung in there to finish despite such terrible elements. I'm wishing everyone healing thoughts for your own strength and perseverance through our own "marathons".
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Gotcha Scubamom24, I definetly could have missed it if you posted. Well good luck on the 30th in case I miss that lol:)
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hey Scubamom! I’m sorry, should’ve been more specific. When PS was asking me all the questions to learn about me, 1 of the reasons he advised against it was that I want to get back to running ASAP. The incisions on the leg take longer to heal. Also, I tend to be a slow healer and I am really over all this cancer stuff and just want my life back. I’ve been a D/DD my whole life and wasn’t at all interested in being that big again. He feels he can get me to a small B and then fill in from Lipo later. I’m not interested in being bigger than a B, although upon first meeting him, I thought I wanted to be a C. Also, didn’t want the scars on the backs of my legs. Hope that clears it up and how about that Des!? She was a beast today! Still waiting to talk to 3 friends who ran today, ick conditions for sure!
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Hi all
It's been a bit since I posted .. but good news I have scheduled my delayed DEIP for June 4th! So happy to have a date and next step on the books!
A little monkey wrench was thrown in to my festivities ... I had a PET/CT scan last week .. Great news - no sign of metastasis!! What a relief!And some So so news - an incidental finding of a nodule on my thyroid — small 1.1 cm but recommend US and biopsy. Oncologist is sending me to Endocrinologist who can't see me until Mid to late June?!? On wait list but I guess it's not critical since MO is aware of timeline. Anyone here have experience with thyroid nodules? I'm asymptomatic and have a great tsh so who knows!
Twillis - so good to hear about your progress! And possibly no more surgeries? Woot!
Bella — could your headaches be allergies? Pollen count is through the roof right now!
Good luck to all with upcoming surgeries! Can't wait to hear your progress!
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Teaberry- Congrats on the clear PET scan!! Mostthyroid nodules are benign even with normal TSH levels. Always good to check it out though. Since you’re asymptomatic they likely won’t start you on any synthroid or anything, but may need to use it later to shrink the nodule if it grows. Good luck & keep us posted!
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Finn21,
Thanks for clarifying, makes sense. Hope you heard from your friends. Rain has abated here. We are SO desperate for spring. I actually just put my snow shovels back in the garage a little while ago!
I have not had chemo (yet) and my heart goes out to you...<3...and Des was AMAZING today, I'm so proud! I work at a major university on the race path but missed it this year. All Boston marks and honors the 5 year mark of the bombing and the heroes therein.
I'm ahead of you surgery wise but behind on the birthday (58 on 5/24). We'll go through this in hand with all the brave ladies here.
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I went to see a plastic surgeon today regarding DIEP surgery. He stated they would remove a small piece of rib on the side they are performing DIEP on. Has anyone had that experience and how did it turn out. Any problems post surgery?
Also, he is going to put in a tissue expander before diep. Is this normal?
Thank you
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Lula73 did they have to take out rib to do your DIEP?
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After 10 days of Anastrozole, my BP spiked. It stayed up in the 151/104 range for three days. My MO told me to stop taking the Anastrozole for seven days and see if myBP returns to my normal. I have been keeping a BP log. When I wake up in the morning my BP is still elevated. Around midday it returns to normal.
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Finn21, can you explain furtherwhy "Being a runner, we ruled out implants and stacked DIEP"? I lead a pretty active outdoor lifestyle. I don't consider myself an athlete by any means but I can hike a canyon no problem. I am scheduled for a stacked DIEP and am now wondering if there is something I am missing. It's scary becuase I won't actually have a face to face consult until 4 days before surgery and I'd be pretty disappointed if the plan changed then. I'm just curious as to theconnection between running and the DIEP procedure. Thanks in advance
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I added you to the list above Chickadee:) Welcome!
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Congrats Teaberry11 on scheduling your surgery! 😀
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mrslaariz- I plan on having diep flap reconstruction but I first need to have radiation.
My PS put in tissue expanders when I had my double mastectomy so I can have an option when it comes to reconstruction time.
Due to the volume of my node involvement, the radiation will be extensive and if it damages the skin tissue, implants won't be an option.
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