2018 DIEP Surgery
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Carmstra835 - so glad to hear you are doing well. Very happy for you!
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Carmstr835-glad you are doing well, and thanks for the detailed report. I’m not good at remembering as many details and typing on an I pad screen instead of a real keyboard.
I think I have bad patches emerging at a couple of points on my breast incision. Of course, I find this on a Friday afternoon. One is at the side of my DIEP breast under my armpit, an one is at the underside. I did see this right after a shower when the scabs were wet (nasty), so I will look again later tonight before I freak out about it. I have been very afraid of healing problems because I know they will trigger intrusive, repetitive negative thoughts. Just the possibility already is. Urg.
Good healing, everyone.
L.
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Carmstra835...glad to hear this good report, hope your healing continues to go well!
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Hi TWills, my primary PS was Dr Dayan at Memorial Sloan Kettering Cancer Center in NYC. The surgery was performed with his colleague whose name I forgot. Dr Dayan is a gifted surgeon and kind and caring in bedside manner. I would recommend him to anyone without hesitation. He also does the lymph node transfer surgery and was on NPR in the last couple months about lymphodema.
For all who are close to surgery, wishing you the very best for a smooth recovery! I have realized I am an "impatient" healer and there have been times in my just-under-six-months since having it I was pretty sad about how long it was all taking, how much I felt like a stranger in my own body. I hope I can provide some comfort in saying it is a slow road but it leads somewhere, at six months I am back to a lot of myself, and lots of ways I'm not yet are probably from chemotherapy, not surgery. I can do much more in the gym now, although I am much slower and more cautious in order to not trigger lymphodema, and because I'm currently doing chemotherapy which makes a whole other hot mess out of your body. If it's not too hot out, which it has been recently here, I can ride my bike 45 minutes to work. I feel a little self conscious when changing in the gym as I am missing a nipple, but doubt anyone has really noticed, and if they have, oh well, an education on the many ways breasts can look. In my clothes, my breasts look awesome. Unclothed, I miss the sensation in my breast when being intimate -- it can feel pressure but not touch. I had a cadaver nerve placed to try to replace some of that sensation, but they said it's experimental without much data and it wouldn't start to generate sensation until about a year out.
I meet with my PS on September 12 to hear his recommendations for Phase 2. Last chemotherapy on August 17. If I do go forward with Phase 2 recommendations I'll do it within the calendar year, as I maxed out my insurance out of pocket a couple weeks into the saga (benefit of early January diagnosis!) and want to not pay it all again next year. Also it feels emotionally satisfying to have it contained in a calendar year (never mind the endlessness of hormone therapy).
Thanks for all who have posted about Phase 2s, I look forward to hearing more in advance of my own decision process. Good to know the liposuction pain has been significant! Does anyone feel like they have scar tissue buildup under the DIEP scar, and if anything can be done about that? Like the upper part of my abdomen is almost concave because it swoops back out to cover the scar tissue. It's minor, and if the correction was major I'd live with it no problem.
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Hello. Why are you looking for pictures only from NOLA Breast reconstruction center
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2002chickadee, thanks you for including your Drs info, I love that we have wonderful surgeons and options all over the country. I totally agree about feeling like a stranger in your own body. I also had chemo and the whole nine yards and it really does do a number on the whole body, I felt the effects from the top of my head to the tip of my toes, visibly and physically. I started back to yoga several weeks ago and then to the gym this past week. I cried the first day of each of them, I’m not an emotional person but it was shocking to be in a familiar place but be in an unfamiliar body. Since I haven’t started back to work yet it my first gauge and comparison in how I feel since all of this nonsense started. Luckily I was sweating like a beast thanks to Tamoxifen so the tears just blended in lol. I’ll have my Phase 2 next month and was hoping to have the other phases done within the year as well but it takes several months to get in with my Dr so it will probably go into next year, that will be 4 years of deductibles and out of pocket $ because I started with BMX in Dec 16. Anywho, as far as the scar tissue goes, I had a good bit of tightness in my inframammary incision on my radiated side and my PT helped with scar release and range of motion. Congrats on finishing chemo soon
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TWills, please add to list f I r stage 2, Aug 24 dawnannn@ nola. Thanks.
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Carmstra835, glad to hear you are doing well.
Leatherette, hope you don't have an infection, let us know.
JustKeepMoving, I'm heading back to two half days next week. I run a small nonprofit and I know they will be glad to haveme back. The following week I'll do a few full days then back to full time.
Got a dress! It's was ridiculously expensive but what the hell. One size smaller than I was before but a bit too tight so now my goal is to lose 10 pounds. When were you all able to start exercising, I forgot to ask.
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If I’ve missed anyone that would like to be added to the thread header surgery list or if something needs to be edited please PM me your info, this thread moves fast and I can easily miss a post and I don’t want to miss anyone. Thanks!! Hope everyone is doing well:)
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I keep seeing posts on various forums about biopsies and cancer recurrences in DIEP breasts. Can someone explain to me how this happens? I thought the mastectomy lowered my risk, but how do you get cancer in a DIEP breast following mastectomy?Is it just recurrances that could happen or can you develop a whole new cancer?
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adgnola- Ladies with DIEP recon have the same risk of recurrence as ladies with implants and they both have the same risk as someone with mx and no recon MX lowers the risk of recurrence significantly over doing lumpectomy but a small risk still exists. That’s why you may hear about biopsies and recurrent BC.
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Tests for breast cancer aren't sensitive enough to detect tiny groups of cancer cells that may be left over after mastectomy.It is possible for isolated groups of cells to survive radiation therapy and chemotherapy intended to reduce the risk of recurrence. Even a single cell that escaped treatment may be able to multiply and grow into a tumor.
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Thanks ladies. I was getting really confused about it all.
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Hello All~ I am going to have the DIEP done on August 22. Just wanted to get some input. Barring any complications, I will be discharged from the hospital on the 25th. I would have about a four drive home. I keep waffling on whether to make arrangements to stay longer around there as I'm not sure how I will be feeling. Part of me thinks I will want to get home to be in my own bed and surroundings. I know everyone is different but would welcome some input. Thank you all for posting on here. It has been very helpful.
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Ann63, I went home in three days and I think I couldhave handled a 4 hour car ride home. I was super tired still so I may have just slept. Take the bumps and turns easy. I personally would want to be in my own bed.
Best of luck to you, let us know how it goes.
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Thank you OCDAmy. Kind of what I am thinking and leaning toward. I will keep everyone posted. It really has helped me to read your experience as well as the others here but can't help getting nervous. I waited 15 years thinking I would be ok with 1 side flat (I am an A cup) but the lopsidedness and dealing with prosthesis and everything has affected my mental health a bit. I feel like this is perfect time in my personal and job life so going for it now. 😊💪 I will continue to view this board and have all of you in my thoughts and prayers. 🙏❤
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Ann63 - I second the vote to head home rather than stick around the hospital. Are you reasonably fit/healthy (other than this breast cancer thing)? I left the hospital as soon as I could knowing that I would sleep, eat and recover better at home. You can sleep in the car on the ride home! I went home after 2 nights - the food was better at home, the opportunity to move around, walk around the block, etc. was better and my bed was more comfortable.
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Hi runcrb. I am 55 but in really good health and always have been (outside of the cancer thing). At first I was getting fearful of something happening once I left the hospital and would be so far from my PS. They did assure me that I would call them first and they would instruct me on what to do next if anything did happen and I felt better after talking it out. Then started to really question would I be up to travelling. My mom is also going with me and as a mom of course was very concerned about that aspect as well. I am trying to keep my options open and see how I actually feel at the time but really believe I would be able heal faster if I can get home and be in my own bed. Thank you for your input. I so appreciate you all.
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Ann- that’s the thing...you won’t know how strong you feel til you get to that point. I padded my stay by 4 additional days just in case there were complications or I didn’t feel up to it. I could’ve traveled home day after post-op appointment but in many ways I’m glad i stayed those extra days as I was definitely stronger and went home with no drains. Keep in mind too that on the car ride home for 4 hours you’ll be getting out to walk every 30-60 minutes to reduce blood clot risk. Hopefully there are lots of exits along your journey.
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Hi runcrb. I am 55 but in really good health and always have been (outside of the cancer thing). At first I was getting fearful of something happening once I left the hospital and would be so far from my PS. They did assure me that I would call them first and they would instruct me on what to do next if anything did happen and I felt better after talking it out. Then started to really question would I be up to travelling. My mom is also going with me and as a mom of course was very concerned about that aspect as well. I am trying to keep my options open and see how I actually feel at the time but really believe I would be able heal faster if I can get home and be in my own bed. Thank you for your input. I so appreciate you all.
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Welcome, Ann63, and glad you are finding the thread helpful. Best to you during this time of decision-making.
I think it was a false alarm about my incision opening up. I still don’t like the way it looks (there is a pink area between the scab and the healthy skin, and it’s shiny-could be new pink scar skin, or shiny b/c it’s open
) and am keeping a close eye on the two areas. I think part of it is that the surrounding areas have healed so well, so I’m really wondering, “Why not these other parts?” and they stand out all the more. I feel like I’m spending a lot of time thinking, “Is my bra too tight or too loose? Should I shower less, or shower more?”....etc.Hopefully I can force myself to think about other things. Hard when it’s hot out and I can’t tolerate heat due to neuropathy.
I went to a friend’s house for dinner last night, and realized that was the longest I have remained vertical since the surgery. It was exhausting after four hours!
Hope you all are well!
L.
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Ann, I was discharged on Day 3 post op to a hotel room. I know I would have been more comfortable at home, too. I did get 1 of my drains out that week, however I still went home with 2 drains. It was all fine. If I had a choice to go home day 3 and come back again a couple days later, I think I would stay rather than the 4 hour ride home and back, but traveling 2 weeks later was fine. The bumps in the road hurt a bit. I didn't need pain meds, it wasn't that bad.
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I'm scheduled for DIEP Flap surgery on Oct 4, 2018. Had bilateral mastectomy w/ implants in 2015. My right implant got infected following year, so I had both removed summer of 2016.
I was living flat, & got chest tattoos. The chest tattoos, while very cool, did not replace my breasts. So, now I've decided to have DIEP Flap surgery.
I'm nervous about recovery because I remember how difficult it was for me when I had the bilateral mastectomy & expanders. I stayed w/ a friend for over a week. I can't do that this time around.
I'm single & live alone. I'm hoping to have some friends help out post-op. But, I'll be on my own most of my recovery. I don't know what I'll be able to do.
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Birdie13,
you can do it! DIEP recovery was easier for me than mastectomy. Keep up your fitness and overall health - will aide in recovery.
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Hello Ladies,
I'll be starting on Tamoxifen this week (8/1) and was wondering if anyone had any words of wisdom. I've been lurking on the Tam Train board, but frankly I'm coming away a bit scared. Has anyone taken the meds without experiencing SE? Do you find it better to take it in the morning, or at night?
Thanks for sharing your experiences. This board has been invaluable to me while navigating this stressful landscape, and has been extremely helpful in guiding me to asking the right questions to make informed decisions.
Your dignity, courage and grace is inspiring.
❤
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Birdie, I too found DIEP easier than my BMX with TEs. If you are not going to have a lot of help I would get prepped in advance with easy meals, putting dishes on the counter, etc. I slept quite a bit the first week. Ask any questions, we are happy to help
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Cev20 - I took Tamoxifen after completing chemo and had no problems other than night sweats - so bad I had to change my pj's. Unfortunately, my dr and I decided to stay on it while undergoing rads and I had a terrible reaction - esophageal spasms that were so awful I thought I was dying. I ended up in the hospital for 4 days. I'm not telling you this to scare you - only to make you aware that if you are having any additional treatment I'd be very careful. I did end up stopping it and once I finished rads had my ovaries removed and started on an AI. I hate the AI's - tried two so far - and the joint and foot pain is really annoying. I don't recall having it with Tamoxifen - so I guess that's a plus on the Tamoxifen side.
The best "remedy" I have for any SE is to stay active. Walking really does help. I'm good so long as I'm moving - it's getting up from sitting or sleeping the is really difficult.
Good luck - this is a tough journey. Getting through the treatment is only a small part of the battle - it's all the maintenance an ongoing stuff that there doesn't seem to be enough preparation for.
Michele
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Birdie,
I too live alone and did this surgery without a caregiver at the hospital. I was discharged to the hotel alone on day 3 of bilateral DIEP and did fine. I flew home on day 7 alone. Got a ride home from the airport and was able to care for myself just fine. I am now 20 days post op. I did not take any narcotics and no pain Meds other than Tylenol and ketorolac after the surgery and stopped all pain Meds on day 5. I did not need them. My ability to be clear headed probably helped me to care for myself. If you have a high tolerance for pain like me. You will be fine caring for yourself. The hardest part was turning on lights that were high and reaching the dishes, but I have a step stool.
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I had a delayed DIEP in May of this year after three years of being flat. Diep did well. On July 20 had nipple reconstruction. Am 10 days out from that and concerned because there is scanning around the areola and discharge around the nipple. One nipple is dark pink while the other is only light pink. Going back to see doctor tomorrow to make sure. School starts back next week and I cannot have infections or issues that may keep me from going bac
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I had diep in May of this year and while I had someone here with me I still 99% took care of all my need
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