2018 DIEP Surgery
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I had my DIEP done 9/13/18. After fat necrosis and truncal lymphedema and a year of abdominal seroma drainage, I find that my right breast feels regular, but my left is very firm and feels like something is in it. In fact, my bs asked if I had an implant, which I don't. I'm curious about how others breasts feel. I'm afraid I may be facing more surgery to correct this. When the lymph backs up, it's very hard and painful
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Amy I know that radiated tissue is always at risk of healing issues, also some people also just heal better than others. I had breast healing issues due to the radiation, this is my 4th breast surgery and fortunately my breast healed well with this surgery, but it did not heal well with the others. This time my abdomen is not healing well and I cannot blame radiation for that. Really wish I could get mine on the mend as it just keeps getting worse.
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Dipaquette, i’m sorry that you’re having such problems with your abdominal incision. I had read online about people having issues. At my post op appt, my ps said that sometimes it just happens. That’s the last thing those of who take every precaution to avoid complications wants to here! So far, so good for me.
I’m 4 weeks out as of yesterday. I’m bored of the walk i’ve been taking so i’m heading to the y today for some low key elliptical. Curious to see how I do.
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Flynn, remember to not over do it, I felt pretty good at 4 weeks and was told I had no restrictions at my 4 week appointment, that is when my last drain came out, my incision started to open up shortly after and continued to get worse until just yesterday when the nurse said it was starting to improve, it has a long ways to go but at least there is progress finally. Of course now I am hoping the uneven stomach, new red patch and different pain is not a sign of something else.
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I had my visit with my plastic surgeon.....I mean the PA, yesterday. It went just as I expected. He said my wounds are "looking good, and to be honest, will take a long time to fully heal." No definition on what "long time" is, but I suspect 5-6 months. I really don't see the hole in the crease of the breast ever filling in, but what do I know?
I am too tired from all of this. I still have to wear the non-adherent bandages to keep my bra from being stained as it still bleeds and oozes. It will be 16 weeks since my surgery tomorrow! I told him I am concerned that I will get a yeast infection as soon as the weather gets hot as I sweat a lot under by breasts and the slightest cut or scratch will cause an infection. He said not to put any powders or creams on the wounds, if I get an infection, call and they will give me something to take orally for it!
Why am I not feeling comforted by that answer? LOL
I haven't seen my doctor in over 9 weeks. I think he has given my case to the PA permanently. Does anyone else feel that after their surgery their doctor lost interest in them? Also, I only heard on these message boards that there are more than one surgery for DIEP reconstruction. Never really heard that from my doctor. All I know is that when I heal from this, if I ever heal from this, I don't want anyone messing with my breasts again! I am very lopsided though, real breast is much larger, and drops lower than my fake breast. Not sure why my doctors thought this would be a better look for me than to be flat, but this is where I am at, no turning back now.
I am happy I will be returning to work and my normal life next week. Ironically, my sister is just starting her journey. She was just diagnosed with IDC last week.
I thought it might be hereditary because my mother and two sisters and myself as well as several cousins on my mother's side had breast cancer. Now I don't think it is because I was the only one diagnosed pre-menopausal. I was 49, the first time, mom was 82, one sister was 59 and the other 72. Mom and I both in 2003, sister 2004, with 2018 recurrence for me followed by 2019 for my other sister. Most of the hereditary risk assessment concentration is on women less than 50 at onset. That seems reasonable to me. Since breast cancer odds increase for all women with age, I assume it is just coincidence in my family. Also, I am very thankful that we were that old at diagnosis. My heart breaks for young women facing this disease!
Dlpaquette, I hope things get better for you very soon! My wounds are all because of prior radiation, so I understand some of what you are going through. Cancer treatment can really suck, but unfortunately this is what we have. At least it is way better than what women had offered to them not so long ago!
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My PS gave me biocorneum today for scar treatment. Has anyone used this and had good results?
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Dipaquette, thanks. I'm being careful but I will remember that the incisions can still open up. It seems like they should be good at a month out! So far, the only irritation I have is under my arm where I had lymph nodes removed and rads. No incision there but it seems sore to me.
Maverick, Sorry I don't have any advice for you. My recovery has been smooth, so far. I've been really happy with ps & his staff. In my initial consult we did talk about the option of fine tuning down the road. I told him more surgery did not sound appealing but I figure that i'll see how things settle.
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Hi everyone, my Dr warned me that 4 weeks out is the danger zone for the abdominal incision because we start getting comfortable and over do it, there are lots of underneath layers that need to heal, not just the part we see. Be easy with yourself, it will be worth it in the end. I actually had to “go easy”for longer than that.
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So I’ll be having my 3rd fat grafting next week and I’m not sure that will be enough, I’m actually more than sure. I knew before my DIEP that I’d be on the smaller side but I just don’t feel proportional enough. Some days I just think I’m being ridiculous and just should appreciate having good shaped and natural feeling breasts but the other days I know I’d be a lot happier if they were a good bit fuller. I’ve lost the weight I gained through chemo and 8 surgeries, 30 lbs😳, and that has also made a difference in the fullness.
I’m wondering if I could/should change back to my local PS, traveling gets really old really fast, because this is more about the cosmetic fixes. Have no idea how many times my insurance will pay for fat grafting. I’d do it several more times to avoid implants. Any advice? Anyone switched Dr’s for the fat grafting? Love my Dr by the way.
Anyway, hope everyone is healing well!
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Hello, it's been about a week since my right DIEP and just wanted to share my experience.
I had UMX back in Dec, then DIEP about a month after my last AC, and had no radiation. Compared to UMX the DIEP was easier to recover from as I no longer have much of any sensation in the chest area, so the only source of pain/soreness is in the stomach area. I still have a hip-to-hip incision even though it was only for one side (they just throw away the other half), and my PS even removed some additional fat above the incision so it would look more even overall.
My PS gave me exparil during the surgery, which would numb me for about 96 hours after, thereby eliminating the need for pain meds (other than Tylenol). It was a little surprising to suddenly feel some tingling pain inside the belly several days after surgery, but it was definitely easier than c-section or myomectomy (fibroid removal) that I've had before.
One complication I had was insufficient drainage after surgery, which caused my flap to swell. Thankfully I was still in the hospital and so they intervened by doing another (smaller) surgery to remove the fluid buildup and to replace the drain with 2 new ones. It was rather tiring as they had to check on the flap every hour for 24 hours after each surgery, and it was a little nerve-wrecking to see the tissue oxygen monitor number going up and down depending on how much I moved/breathed.
One last thing is as I saw a small hematoma forming on my left breast after the surgery, I inevitably wondered if that would cause any remaining cancer cells to move there along with it. But honestly if it's in the blood, it could be anywhere, so I try not to think about it.
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Brink, sounds like you had a couple bumps but are coming along. I hope from here on out, it’s a very smooth ride.
Twills- kudos to you on the weight loss. I’ve also gained some weight thru treatment and getting ready for surgery. Assuming I’m successful at losing it, i’ll be curious to see how my breasts are affected. It’s hard for me to think about a phase 2 now but perhaps down the road. If I were you, i’d talk to your ps about getting fine tuning done closer to home. It’s a reasonable request as long as you are comfortable with ps’s in your area. I think there are a couple who are pretty well regarded at Moffitt and Tampa.
I’m still having irritation under my right arm. Got it checked just to be sure. Skin just seems pinkish but it’s probably radiated tissue impacted by surgery. Nothing happening with the incisions in that area. It does feel somewhat similar to post rads.
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Good morning, I'm new to BCO and I am currently working through some hiccups from my flap procedure. I got an infection and 80% of the abdominal incision opened. It's painful, but gritting my teeth and getting through it has been an all too well known feeling during my recovery. Tomorrow is my 30 day post op mark and I'm hoping to have this behind me shortly. I'm wondering how long it takes for the feeling to return to my breast and stomach? And the rock hard tissue in my left breast to become more like normal tissue?
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Kittygee, talk to your PS and his/her nurses. I find the nurses know a lot. 12 months after my DIEP my surgeon made three injections at my belly button scar (steroids to address the hardness of the scar) - I didn’t feel a thing. My belly doesn’t feel numb (that fuzzy feeling) but I am not sure that it will ever be back to full feeling. I don’t notice or think about it. Occasionally I get a weird muscle contraction but only one side and always the same side. Breast is similar- no feeling but no weirdness either. I just don’t notice. I do feel the muscle (pec) and around the side under the arm when exercising.
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Thanks Flynn, I’m driving over to Orlando for another consult with him just to make sure of the plan before my Friday surgery. I’m also going to see my local surgeon I used for my expander surgery on Wed, one failed so that’s what led me to DIEP. Anyway, I’ll get their options and decide. I’m not sure how’s many revisions/fat grafting my insurance will cover, there’s must be a limit.
The healing process is just that, a process. Different things come up hear and there like redness, soreness, twinges. All of those things get fewer and farther in between as time goes on but it sounds like you’re doing well. I can’t beleive it’s been over a year now since my DIEP. Hang in there, the worst should be behind you. I felt the same about revisions, but then I felt mostly healed and I could see the other side of all of this and knew I needed tweaking to feel better about everything. Time will tell:)
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Thank you Flynn! On day 10 after my DIEP surgery I already started feeling some itchiness under the skin so I know it’s all starting to heal. Woohoo!
KittyGee77 - I don’t believe feelings will return in the stomach but some people might regain some sensation in the breast after DIEP.
Has anyone done one-sided DIEP without going on to phase 2? Does the unevenness really bother you? I’m still debating whether I'll do more surgery.
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Brinkofeternity, I could have skipped a second surgery as symmetry was close. I chose to have a small lift done on the natural breast and had fullness removed from the DIEP breast. The reduction eliminated that “side boob” and made everything much more comfortable. I’m pretty certain only my PS and I can tell what the second surgery accomplished.
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Hello,
I am new to this forum and I am having Double Mastectomy with DIEP recon at the same time on August 12th. Looking to hear experiences from anyone who has done the same.
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Hi rush1187– I did that last November. I had some healing issues that required a second minor surgery, but otherwise healed well. I had my mom stay with me for the first couple weeks so my husband could work still. It was nice to have her here and she was able to help with cooking and my self care. My husband was great with the drains and wound care. Chemo brain has me fuzzy on some details but I will be happy to answer any questions I can
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Runrcrb - Thank you! I do feel they look pretty close and will probably be identical once I wear a bra, so I might skip phase 2. Right now it is a little hard for me to imagine being out of commission for another few weeks from yet another surgery. But I might change my mind later...
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Mncteach
Thank you for your message! I am so glad to hear that everything went considerably well for you. I am also going to have my mom stay with me for a while. My husband gets queasy very easily, so not sure how much help he will be with drains, but he is awesome with helping out around the house. I have already had two surgeries, lumpectomies and lymph node removals. I have had BC diagnosed on both breasts since September, and he was great both times. I am sorry you had to go through chemo. That must have been very difficult. How are you feeling now? What was the hardest thing for you? I have been able to keep a pretty positive attitude at most times, but the past couple of weeks, I have been very emotional. Did you purchase any special garments for after surgery? I am wondering what I should get to prepare. I hope you don't mind the questions, I am so grateful to talk to someone who has gone through this.
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Brinkofeternity, if you decide to get any revisions, I had surgery on Monday, back at work the following Monday, fast walking the next week and slow running the next week. So not out of commission for a long time but yes, a bit disruptive.
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rush1187– I never mind questions and sharing what I did!
Chemo was and is tough, last one tomorrow! I am very fatigued and get winded pretty easily as I am anemic as well. The nice weather and knowing I’m almost done helps though!
As for garments I did button down for my tops and looser bottoms than normal, not fall down loose just easier to maneuver around drains. Mine a draw string waist so I could adjust them easily.
Hope this helps
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Mncteach
Here's to the last chemo treatment! Thank goodness for you that you can put that behind you.
Thank you so much for your help and answers to my question. I hope that everything stays positive for you from here on out.
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Runrcrb - Thank you for the info! I met my PS today and he said I can do a revision if I want in 3-4 months, to remove minor dogears around my waist and for nipple reconstruction. I’m not sure if I would bother...
Do people feel nipple reconstruction is that necessary?
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Hi, I'm been reading through this thread to learn all I can. Last year (Aug 18) I had a lumpectomy/lymph-ectomy on my right breast for a 7mm (HR+/HER2-, stage 1, DCIS/IDC) tumor followed by 28 rounds of radiation that concluded in Oct. Last month during my first post-surgery mammo a second tumor was identified in my left breast (1.8 cm, HR+/HER2-, stage 1, IDC). Both tumors had a growth rate of <0.1.
My surgeon was honestly surprised by the second diagnosis; she's thinking there is a genetic anomoly at play. I'm awaiting the results of the gene profile, but in the meantime I'm preparing myself for bilateral mx w/diep flap...if my breasts are intent upon killing me, they have to go. Right now I'm tentatively scheduled for surgery on 20 June, and I'm more than a little nervous.
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ConnieW2018
I have been going through something similar to you. First surgery on right Nov 22, lumpectomy, followed by 21 sessions of radiation, then second surgery on Feb 14, lumpectomy and sentinel node removal, no radiation as pathology showed me at very high risk of reoccurrence. I did genetics testing and it came back negative. I have also opted for bilateral mx w/diep flap. My surgery is not until Aug 12. I am nervous as well and hate the waiting. Trying to stay positive and keep active in the mean time. Feel free to message me on this forum or privately, if you want to talk more. Hope that you can hang in there until your surgery date and that you have a lot of love and support around you.
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I had a bilateral MS Tram flap in December of 2018, and I just completed Phase 2. I'm very sore, mainly from the fat grafting. The pain is not quite as bad as the first surgery, but more significant than I was expecting. Hopefully the intensity of the pain won't linger as long as it did after Phase 1.
I know this annoying pain is temporary, and the final results will definitely be worth it. I had a lot of work done this time with abdominal scar revision, dog ear removal, nipple-areolarecon, fat transfer to chest, and liposuction to my flanks, under arms, pelvic and upper abdominal area. My surgeon is excellent, and I thank God that I've been blessed with access to his outstanding talent and professionalism.
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I saw my PS on Tuesday, my 2 month Diep f/u, he does not want to follow up again until i am ready for stage 2. I will be going back to work tomorrow, the home health wound care nurse discharged today and does not feel the incision is healed enough to not have any medical eyes on it so is trying to get a referral to wound care. I am out of PTO and FMLA time so missing any work could get me a verbal warning, of course to add to this, my oncology office called with results of my labs. I was anemic a month ago and told her it was probably from the DIEP a month earlier. Well, a month later and my labs are worse instead of better. I am was told they were going to do another test in the blood but will likely be referring me to GI as they feel that is where the blood loss is probably coming from. It takes 6 months to get into a GI around here, I know because I work at a doctor's office that refers to GI. I hope they can pull some strings and get me in sooner because right now I am stressing, worried it is cancer, hoping I have some other GI issue. I just feel like my whole life has been "once I make it through this bump in the road things will get better, " but there always seems to be another bump, sometimes before I even make it over the previous one. I always try to remind myself that there are people going through worse.
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So sorry Dlpaquette, that is just too much you’re having to deal with. I hope it starts going smoother than it is now and you get some answers so you don’t have to guess and naturally imagine the worse. Hold on, there will be another side to this but I am sorry that this part is dragging on for you. You’re right, thereare people going through worse but that doesn’t negate what you’re going through. Keep sharing with us, get that frustration out of your system.
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Thanks Twills, I did get a call from my oncology office yesterday, they have already sent a GI referral, my manager at work said she will contact their manager to see if we can get me in sooner. They also put me on iron supplements. Hoping for answers sooner rather than later.
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