2018 DIEP Surgery
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Rdeesides...it took about 2 weeks for me to get on the surgery calendar from the time I had my first consult with the PS. During that time they were getting my insurance approval. One thing I have learned from my mastectomy in October last year and my upcoming Phase 2 in early December is that the surgery schedule gets busy at year-end because people are trying to get procedures in for insurance purposes. So, the sooner you select one and can ask them to get you on the schedule the better. Good luck! Hope you find a PS you feel great about and you can get your surgery in before year-end.
How are you doing with your Xeloda; are you finished with it yet? I hope it hasn't been too bad on you.
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It took almost 6 months for me to get on my PS’s schedule, he’s very busy which is furtrating but understandable. Same with phase 2.
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It took me about 5-6 months to get mine scheduled - same group at Twills - they are very busy and subject to reschedule if active patient comes in.
Justkeepmoving - I understand the concern about chemo but Taxol was very tolerable for me. I didn't take Hereceptin so no words of advice there. Honestly if you got through the DIEP chemo will be a cakewalk in comparison! I understand the anxiety but it has a beginning and an ending - and you will get through it!
Hugs!
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thank you Shellybeans.....
it's strange but the idea of chemo isn't bothering me as much as the wait to find out the plan. I don't know why it's taking so long. Hopefully this week I'll get some answers. I don't understand the wait but I assume my dr is being careful (she is) and is consulting with other doctors and specialists....but bring it on already!! I got this!!
My time between diagnosis and surgery was about a month. I received the call from the Dr on May 22 and surgery was June 29. They wanted to hurry and thought that was pushing it but scheduling the DIEP flap took some time and planning.
I'm 3 months post op and the scars are really starting to fade. I hope everyone else is noticing improvements as well
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pet scan results came back. I am having to have a biopsy on an enlarged pelvic lymph node that came back hyper metabolic and showed very strong on scan. Biopsy is Thursday oct 4th. They want to say this lymph node came from the diep surgery but my plastic surgeon said he has nothing to do with that and that he didn’t go anywhere near those area
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Teacher, I hope it turns out well. They found an errant lymph node in my abdomen during my DIEP. Thankfully, it came back benign, but whew! Nobody needs that stress!
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Teacher01 - I've been wondering what has been going on with you. Fingers crossed for a non eventful biopsy resul
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yea I am crawlin the walls with anxiety since the pet scan. Suspicious findings on scan showed in my leg I already had bone cancer in nine years ago so they are investigating it also.
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Justkeepmoving - I was similar from time from diagnosis to surgery. I found out I had BC on 1/4/17 - had BMX on 1/30/17. I didn't start chemo until 2/28/17 - which felt like forever. I had to recover from the BMX and have a port put in - what I learned is that my oncologist had to get the dosage, etc. just right. Even though we may have similar protocols, the dosage isn't always the same. As much as you want them to hurry it's better they get it right. Same thing happened with rads - I was in a clinical trial so that added time and I just wanted it done!
It's funny because as I'm 2 weeks and 2 days out from DIEP I just want to be recovered! I"m having to take my own advice and be patient. I still have one drain and am not able to walk up straight so it seems like forever before I'll be myself again. As I think back on my past recoveries I see how I got through it - and I will now.
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thank you Shellybeans.
And you will get better/stronger with each day. You may not notice it yet but one day soon you'll realize that you're walking a bit faster, doing a bit more. Around 4 weeks post op is when I turned a big corner and it seems others had a similar time frame. You're almost there 😉
Thank you for talking me down off my ledge! The unknown is scary...
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Mine's scheduled 10/23 as well!
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Sending me your date via private message is working so much better so it doesn’t get lost in the thread. If I’ve missed anyone or need to modify a date please message me! I can’t keep up with the thread some days and it’s hard to go back and find a post if I’m unable to update at the time I read it. Thanks everyone, we’ll be heading into a new year soon!! My second Phase 2 will be in Jan. Not sure what we’ll call that yet. Maybe 2.1,
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Hello everyone !
I almost never post but read a lot... Hope everyone is doing as fine as possible today !
My surgery is booked for the 14th of November. I'm excited because the adjustment to my post mastectomy body isn't getting better but also a bit worried. I couldn't find a post talking about the reconstruction I'm going to have (I can't even find someone who did what I've been proposed by my BS ! ). So a DIEP + IGap is planned for me but I guess I can still learn a lot from y'all with DIEP, right 😊😋
So, I have a question regarding pain and meds. What kind of pain meds did this surgeon prescribed after the surgery ? I lost a lot of of weight after my mastectomy, in large part because of those pain meds ! And how many days/weeks did you use them for ?
Also, when were you able to drive again ? And in general, to do normal things again ?
And was anyone asked to gain weight before surgery ? My surgeon said nothing about that but everyone around me say that I should... Not sure that's a good idea, there's no way to be sure I'll gain weight in specific area, right ?
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Sol, continue to eat a healthy, balanced diet, exercise and overall maintain your current state. The healthier and fit you are going in the easier your recovery will be. As to pain meds and your other questions about recovery, each of us varies and there is not one answer. I took nothing stronger than tylenol after 8am the day after my surgery. I found mastectomy recovery harder than diep. Generally speaking, no driving with narcotics or drains. My last drain was out at day 10 and I drove to dinner that night. I slept in my own bed, on my back, from the day I came home from the hospital (2 nights in hospital). I walked outside regularly. at five weeks, I went back to work (desk job) and restarted swimming. I progressed from fast walking to running shortly thereafter. For the ease of my recovery, there are just a many women who struggled mightily.
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Sol, it does seem like everyone is different. I had a spinal block right before surgery and woke up pretty pain free. I was on round the clock Tylenol and took gabapentin and Celebrex. I had an oxy prescription but barely used it. I drove once the drains came out at 10 days. It was tricky turning the wheel at first so short distances to start. Best of luck to you
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Hi Sol, I was in the hospital for 3 nights. For pain, I was given alternately, double strength Tylenol and something stronger, but embarrassed to say I don't know what. Went home with an Rx for oxycodone but used it only once bcs it put me sleep. I used Tylenol off and on for about 2 weeks. I had 3 drains out at 3 weeks and the last (pelvic) drain at 4 weeks, and think I started driving after that.
After my BMX and node removal, my affected underarm side was tender for a while and has been puffy/swollen since then. Had a lymph node transfer with DIEP so it is still puffy.
I have not bounced back as fast as others, but am doing much better than I did after BMX. Main cause is side affects from Letrozole (stiffness etc) and foot neuropathy from chemo, so I just never feel “good" only “better" on some days. And tbh, I'm laz...um...not at all as active as I should be - but I've got a lands end bathing suit on the way and plan to start swimming! I do feel better when I'm more active.
Re weight - I’d guess your Dr is proposing IGAP bcs you may not have quite enough tummy tissue for both breasts? I wouldn’t worry about gaining weight - your Dr would not be recommending the surgery if you were not a good candidate.
Good luck to you!!
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Hi Kickin- 10/23 is my date too! Getting nervous.....
Did anyone need physical therapy after the DIEP? Is the arm movement as restricted as it was after the BMX?
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Hello! I've read these boards off and on for three years now, but only recently(~5 months ago) happened upon the DIEP threads. I do so appreciate the helpful advice and honesty from all of you brave women. I was diagnosed with right-sided, multi-focal, triple positive IDC in November, 2015 and had a right total mastectomy (with three sentinel nodes removed) in December, 2015. I had THCP chemo from February--September 2016. The only option I was given at the time of my surgery for reconstruction was an implant .
I am ready to move on with my life and am scheduled for DIEP on November 6 in NOLA. I'm wondering if it would be reasonable for me to expect to be able to travel 2.5 hours north of my home to a conference where my kids will be competing on Nov. 16-18?
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Pharmdgirl7 , everyone is so different in their recovery. Are you having just one breast or both, that seems to make a difference in recovery. Ten days after my single side DIEP I was just getting my first drains out. I probably could have driven in a car for a few hours but I don't think I would have done much else. You will still be tired and sore. Are you going to be in a hotel relaxing or watching them compete?
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esny I did have PT after my mastectoy and it was very helpful. I probably could have used it again after DIEP but I am basically using all the stretching exercises my therapist showed me and I am keeping pretty good range of motion but I have to do the stretching every day. You will have restrictions, especially with lifting.
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Hi OCDAmy,
I will be having my left breast removed as well, so I will be having both breasts reconstructed. It was my understanding that I will be discharged after my surgery to a hotel in NOLA and having to care for myself there (with my husband) until my post-op appointment on Nov. 12.
The conference is at Hershey Lodge Resort and we will be staying there. I feel like I would be able to rest as much as I need to. I will be having my left breast removed as well, so I will be having dual reconstruction.
Thanks!
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My Bilateral DIEP was July 10 and I am pretty much healed up from that now. I was able to do a weekend bus trip with 60 kids and sleep on a GYM floor, travel all day long in the hot august heat with the kids for 3 days Aug 9-11. I did very well.
I am scheduled for my 1st revision Oct 16th; he said 2 1/2 hours and 1 overnight at the hospital. He will correct a "pincushion" deformity that developed on the inside, upper part of my radiated right breast. This area is very hard, as well as this weird deformity. The left DIEP breast was not radiated but I do have very hard thick areas in the inside upper part of that breast, as well. He doesn't believe the hard areas are necrosis, but I don't like the hard spots. I don't believe he plans to do anything about the hard areas, he said that is just what happens with radiated tissue. I get worried about the cancer coming back and that is the cancer bed where the original cancer was on my right breast. He will do some fat grafting to give me more cleavage; now I have zero cleavage. He says I need 2 revisions, but will do the fat grafting and minor scar revisions 1st, then in 3-4 months he will address the size and shape differences and the fact my non radiated breast is dropping much lower than my right radiated breast. He believe it will drop further and wants to give it more time before he tightens it up as well as give the fat grafting more time to heal. My stomach incision has a very hard nodule in my right groin area below where my donor incision is. I also have several other smaller lumps along, above, and below the incision. He will revise that incision and remove those lumps and scar tissue that makes the scar unsightly. In the clinical report, he referred to the largest lump as a lymph node or necrotic tissue. It is about 1 inch long and 1/2-3/4 inch thick and very hard.
Anyone have any experience with these types of issues near your stomach incision? That lump was there immediately after the surgery. Any ideas on what could cause this? If it is a lymph node, other than cancer would cause a lymph node to grow so large and hard without pain? This nodule is not painful unless you press very hard. It does not extend up to the incision.
Does anyone with radiation have issues of areas of your DIEP very hard? I would understand it if all the radiated area was hard, but it is not, just some places and even the breast that wasn't radiated has areas of hard tissue....beginning to wonder if I should have done this surgery. I like the fact I have breasts and I don't get called MR. anymore... but bathing suits are not yet an option, I looked better with fake boobs than I do right now. I know, it is still not finished, but I was hoping to be done this year and he has already told me it cant be finished until at the soonest Jan 2019 and some people have 3-4 revisions to get it right...
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Pharmdgirl- provided no complications and you have somewhere to rest and some way to get there to rest when you need to you should be fine. I went to lunch and walked 3 blocks back to the stayalfred condo we rented in NOLA on the day of discharge. 2 nights later we walked 2 blocks to watch one of the Mardi gras parades for about an hour. Just make sure you get out of the car and walk at least once an hour while traveling. Bring/request lots of pillows for the bed in the hotel room. And don't push yourself too hard. Set realistic (bordering on super conservative) expectations for yourself and make sure the kids know and understand those expectations and limitations including Mom may miss most of the game/match/etc and need to stay in the room.
Are you on the NOLA patient FB page? If not and you’d like to be, let me know and I’ll help you get added
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Carmstr835 - my radiated right breast has a very hard area on the side - it feels like plastic it's so stiff. It's from the radiation and I know that during surgery he did as much as he could to loosen it. The only good thing, I guess, is that I do not have a side boob at all because it is so hard.
I'm right there with you wondering whether this was worth it sometimes - though I'm not even 3 weeks out yet so I'm sure it's too soon to say that. I had my final drain removed yesterday and it looks like I was starting to develop an infection in it - it was really painful and just flared up out of nowhere.
Thinking about phase 2 makes me so nervous - I know for sure I'll need it but I'm so far from wanting to go anywhere near a hospital right now! Good luck to you and everyone making progress.
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Hi ladies, met with a PS today to get an opinion if I could DIEP. He wants me to get a CT scan to check the blood vessels in the abdominal area. Anyone else had to do that? He said the size of the vessels will indicate whether the flap is likely to be successful. He said very small vessels are very difficult to stitch up and more likely to fail.
Thanks!
R
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rdeesides, I did have to get the CT scan. As a bonus, my CT report also indicated all clear with my liver, kidneys, etc. My MO doesn't want to do scans so I was glad I had this to put my mind at ease. I did have one side with good vessels and the other side not so much. That was part of why I decided to just have rads breast done.
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Hi yes i had a CT scan to see about my blood vessels too but am still waiting for the results. I think it is standard for Diep?
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I'm so sore my phase 1 was completed Sept 25. My boobs feel sore inside and my hips and insides just kinda hurt. It's really hard to tell if what I feel is normal. My boobs look healthy and feel warm so I think I'm ok. I didn't need a binder and only a surgical bra to hold the pads over the silver tape. So does all this sound normal? Mentally I can't handle another set back. Went through hurricane my mom passed then this surgery and I'm tired.
Pray for me y'all I need some strength
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ok that post reads so sad and whiny... I think I just need reassured that I'm going to heal ok. I'm so far beyond caring about the appearance..at least today. I have tons of blessings so I hope that didn't come off as unappreciative of what I have. I know things could be worse.
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Mucki - you're only a week out. sore is probably fine. rest. you've had a great deal of stress in the past few weeks - my condolences on the loss of your mother. Rest, drink plenty of fluids and take it easy. I assume you have a post op visit this week - hopefully that check in will allow you to put the fears related to surgery behind you.
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