2018 DIEP Surgery
Comments
-
teaberry- I second what runrcrb said. Ask your doc in advance if they will give you a bra or does he want you braless. Most PSs will not want you in anything that compresses after surgery til at least 4 week’s out which means no sports bra. And it makes sense as stage 1 is all about establishing blood flow to the tissue in your breasts. Compression can shut off/decrease blood supply inadvertently and lead to necrosis and/or flap failure. I know NOLA gives you the bra they want you to wear for 4 weeks then you can switch out for something like a genie bra that’s a size too big or any other bra without underwire. The bras from anaono are also very comfortable and designed for comfort with/after breast surgery. When you’re ready, i highly recommend the full coverage pocketed bra in their make merry collection-soft and comfy while providing support.
Trying to buy bras before surgery is tough because you don’t know what size you’re going to be after stage 1 - they usually make you a little bigger than you are now as it’s easier and less chance of reabsorption to reduce in stage 2 than it is to make you bigger.
0 -
Bella- my MO said he would put me on anastrozole at my first appointment . Then when it finally came time to prescribe he chose Femara. I asked why and he said it was because Femara had the fewest/lowest incidence of side effects.
0 -
Thank you runrcrb and lula! I reread the paperwork and it says wear a supportive sports bra "to" hospital on surgery day but no bra (only a camisole) for 3-4 weeks after! I really have no idea what size I will be but I am assuming smaller since first PS I went to said I didn't have enough tissue in my tummy to even do the DIEP flap and 2nd highly recommended PS told me I would be happy with the result. I honestly think the first PS was way too young and inexperienced and really had no idea. Of course I am going with PS#2 ! I'm currently a DD hoping for a C
0 -
I asked my oncologist the same - no one is better than the other. Different doctors prescribe different ones for a variety of reasons or no reason at all. I started on arimidex and in discussing side effects after 4 months we decided to try aromasin. I experienced fewer side effects so am sticking with aromasin. I adjusted when I take it as it impedes my sleep. Since switching to taking it in the morning I sleep better.
There are tons of threads on the AI board - read through but realize every one is different.
0 -
Bella2013, I will cover your question about anesthesia. I woke up from anesthesia in horrible pain, even with the pain ball attached. Before surgery I had asked to try to avoid narcotics because of all the news about the opioid crisis. I was terrified. Anyway, my sister insisted that I be given pain meds and would not leave until I had a pain pump. I had a morphine drip for two days then was given Percocet. I left the hospital with a script for Percocet and my care takers doled it out to me and weaned me off of the meds after about 2 weeks. Everyone is different. I had only ever had 2 minor surgeries under anesthesia and had no experience taking pain pills. It all worked out fine. I took the pills, they did their job and I had no issues being weaned off of them.
I understand very well your anxiety about being under anesthesia for a long surgery. Before surgery you will meet the anesthesiologist. It will be very helpful and serve to reduce your stress. On day two my sister ran into the anesthesiologist coming into the hospital. They recognized each other. She asked my sister how I was doing. My sister asked what she did during the 8 hours. She said "I was at the end of the table and just watched your sister." They had a laugh.
My experience may not mirror yours. Some people require nothing more than Tylenol. Good luck with your recovery.0 -
Teaberry11, the toilet seat idea seems like a great idea. I’m tall too, 5’9”. That’s great that they measured you to keep an eye out for lymphedema.
Help3, hopefully they’ll keep an eye on you to make sure you don’t have any lymphedema issues, I know it can be a real concern. I haven’t had any issues that I know of, no one has really checked for it though. Every now and then my arm feels kinda tight but not noticabaly bigger.
Thank you again everyone for sharing your experience so that we can all learn.
I ordered my support pillows, one for under my legs/knees for when I can get back in my bed and an L shaped pillow which was a life saver after BMX and TE surgeries. It offered great arm support and kept me from feeling like I was so flat in my back, kinda like a slight wedge on my side that actually stayed put.
0 -
Suburbs, thanks so much for sharing your experience. I woke up from my lumpectomy in excruciating pain so I want to make sure my pain levels will be managed when I wake up from BMX.
How are you feeling now? Are you pleased with the results of your DIEP Flap reconstruction? Have you had any complications? How long did it take for you to resume some level of normalcy in your day to day life?
How are you doing on your hormone therapy? Side effects? Weight loss or gain?
Thanks..
0 -
You can remove me from the 'schedule'. Life has happened and I had to cancel everything for now. Maybe in the fall. Good luck to everyone!
0 -
Oh no GreenEyes81, life has a way of doing that sometimes. More time to prepare:)
0 -
Just found this thread thank you Twills for starting it. I just had my DIEP in December so I am still in the midst of everything. The 2017 thread wound down too fast for me!
My situation: Cancer was in 2011, had TE's & implant reconstruction at first. After a while I became pretty unhappy with the implants. So after much consideration and planning, went through the DIEP. So far I am glad I did but there are plenty of challenges, it's just another huge cancer-related curveball.
Good luck everyone, I will try and chime in.
Michele
0 -
Hi LMichele, so glad you found us! Look forward to hearing your experience.
0 -
Post-op update.
I got back home Friday after Monday's surgery. Everything is looking and going really good. I have little things I am watching out for still, but largely I am out of the woods so far. I have been so grateful for the medical professionals who I came into contact with, 98.9% of them made my life better by their actions and manner. And some are just angels, jeez. And the Dr's must be wizards to pull off such amazing work, I can't say enough.
Funny, all my prep for the hospital, getting supplies etc, I needed nothing, they had everything. I wore their hospital gowns, it was just easier to go to the bathroom. I know hospitals may vary with what they supply. Eye coverings to sleep and ear thingies to dim sound will be important so you can get good rest. I brought various things for me to read or watch or my comp and used none of it for the five days I was there. I did have a tv in my room and it was a deep pleasure to watch a narrative movie one night before I was going to sleep, it was a reprieve from thinking and talking to myself and it did not have commercials...I was able to do that two nights in a row.
I had visitors that were great but I likely overdid it with talking etc when I really needed to rest.
If you have time to prep for surgery, I think it is not too late to get physically stronger, especially in your legs and arms...your core too. But having strong legs will make it a lot easier to get out of bed with assistance and eventually on your own and going to the bathroom.
I was able to take a xanax the morning of my surgery...2 hours before my arrival to the hospital which was within their no water window etc...and it helped a lot. I asked my general dr for this. I did not have nerves really until I walked into the operating room and was laying on the table and they were strapping down my legs and I started asking when can anesthesia start? I was getting a big flight response, but they started within a minute and I could not remember anything until I woke in recovery... They kept me there for a while until they let my husb and fam in and they thought I looked great. I took a little while before being moved to the room I was to stay in.
Something about the transit made me queasy and I did throw up but it was not a huge issue.
I thought I was going to be in a group room, but they changed the method of dealing with plastics patients in my hospital and I had a private room. My husband slept on a pull out chair-bed that was not too comfy. Our nurse came in every hour to check the doppler for the soothing swish of blood flow through the new blood vessel connections and to check vitals. These hourly visits ended up being very helpful as our nurse answered many questions we had each time. Example, one time I worried what was happening to my left jaw hurting and it was numb all the way up to my ear. The nurse answered that it was likely due to the oxygen tube down my throat for so many hours. Just so many little questions would arise.
I had no bandages on the belly or breast area, so we were shocked to see the results so soon and my sisters and sister in law and husband were jaw-dropping shocked to see how unreal it looked. Firstly it was crazy to see my belly, the incision scar is very intense, but the breast was as if I had not had a mastectomy. AT ALL. Just unreal. Of course I did not even see the 'flap' until Thursday. I do not think my brain was on full capacity as I am usually very inquisitive..
I did have a skin sparing and nipple sparing mastectomy. The nipple part is said to be more risky for me being a recurrent cancer with prior radiation, but my Dr said it was a risk worth taking, so we went for it and so far so good...some persistent bruising and a red mark I am wondering about. I am told if it fails a skin bandage will be taken from elsewhere and put on there and I would proceed with nipple tattoos or similar...
Walking really is important as people say.. Just try to do what you can. You will feel pressure on your belly area, like added weight and it will get heavier the more you walk in a session, at least it was for me. But then you can rest in an upright chair and try again in a little while.
I did have one incident that was scary and am sharing as I am told it can be common. Having a bowel movement is an important matter as we know. It is a very important matter after surgery and you will be give stool softeners to counter the narcotic impact with hardening of stool. So I think it was my 2nd day and I was sitting in a chair after having eaten breakfast.. I had felt my bowels move when I was in bed a bit...and then felt them move sitting in the chair. My husband had gone down to the cafeteria to pick up a quick bite for himself. I rang the front desk to say I needed an escort to the bathroom, thinking that it was hopefully much needed air release or better. Then sitting there I quickly became cold and clammy and rang the front desk saying I felt I was going to faint. The next thing I knew I had a face close to mine saying everything is going to be ok and I had a stream of food just overflowing out of my mouth all over myself as I sat in the chair with my head back...I was a total mess and felt very sick. They carried me into bed carefully and I proceeded to pass out again and throwup again while passed out. They called a bunch of people into the room, looking at my blood this and that...I could barely talk. Later after blood test and vitals came back good it was decided that I had had a vagal nerve response basically from my poop being backed up or something.
I slept for a couple hours after that. Within a couple hours after that I did have a much needed release of gas and stool and did not feel faint.
But now my husband is still afraid to have me be left alone. It was definitely a scary scene for him to have walked into.
But believe me even with that episode, I feel so lucky to have had such a fortunate time. The hospital was awesome. If I end up having complications later, I will deal with it, but my personal experience was like a walk in the park compared to what I had imagined.
I do think having read so many experiences gave me an understanding of many scenarios and preparation for the worst that could happen, but once I found the best outcomes and experiences like with RUNRCB's account, I really tried to hold that good outcome close and think positively that that could be my outcome as well, and I could push myself a bit while in the hospital within limits.
I would advise drinking a lot of water while the catheter is in. A lot, you want to get all the chemicals out. Once you are walking a little, they will take it out and please try to still drink a lot of water, even knowing you will have to get up and go to the bathroom.. You will be amazed at how your body wants to heal and how your body will respond and get noticeably better even in the span of a day in ease of movement. If they have given you one tiny pitcher of water, ask for two and don't be afraid to ask them to be filled up. And as they say, food is nutrition, eat..
thank you again to all who have shared your stories and your support, it very much helps. I will write more if I think of more...ty
0 -
Lifewins, so happy to hear from you and you sound like you are doing so well. Thank you for sharing your experience. I have been thinking about you all week.
How long were you in surgery? What was your pain level following surgery? How many drains do you have?
Blessings
0 -
It’s so great to hear from you Lifewins! Sounds like you’ve had quite the experience, thank you for sharing. Hope you’re healing and resting comfortably. Keep us updated as you feel like it:)
0 -
lifewins-so glad you’re doing well! It is indeed amazing to wake up from surgery and still not only have breasts, but have them look like nothing was done (at least from a looking down your front perspective). Hoping the rest of your recovery goes smoothly!
0 -
thank you twills and bella2013..Bella, to answer your questions:
How long were you in surgery? - It was supposed to be 2 hours for skin/nipple saving mastectomy and 1 or 2 nodes plus 6-8 hours for DIEP flap. But the whole surgery ended up lasting almost 5 hours. It turns out my breast surgeon and plastic surgeon were working simultaneously and they had additional surgeons with them as well, very much a big team effort.
What was your pain level following surgery? I did not have ANY pain. They kept me dosed with IV pain relief. But once I was taken off the IV it was oxycodone as needed and I sometimes opted not to use it much. My 'pain' which was really just discomfort or pressure was only 1 or 2 or 3 out of 1-10 which I know is very relative and how can anyone ever describe. I was ok with feeling something, I did not of course want to feel real pain. I did decide on doing a lower dose of Oxy when pushing myself to get out of bed and walk a lot that day. I was also encouraged not to get back into bed once I was out of it as the best way to get better sooner. If I was feeling like I needed more rest I did get back into bed. I had two options for Oxy, 5 or 10 mg I think. I would only use 10 when I wanted to get a good rest at night and used 5 for my walking sprees and my ride home. I am now just using tylenol, just two and not very often. I am amazed by the body. I am also taking aspirin at home as a replacement for the clot preventative med they gave me while in hosp (it was a shot). I am taking the gabi (something or other) for neuropathy pain still as it is prescribed and I do take the muscle relaxer they gave but only for sleep.
How many drains do you have? - I have three drains, one for my left breast and two for my belly. Both are at either side of my body at the end of the incisions. I got the homedepot apron (only .97 cents!) and this is such a comfortable solution for holding all three. I am 5'2" so the breast drain piping goes into the apron without pulling, a taller woman might have an issue with pulling, I do not know. Twenty years ago they had much harder plastic piping for the drains and it was VERY uncomfortable, but these are very pliable and small. I know not everyone is going to a hospital that is using these smaller drain pipes (I do not know official name). The apron itself it a bit coarse in terms of fabric, so it is tied around my waist under my belly cuts and over my flannel pj's. When I go to the bathroom I pull down just my pj's and leave the apron up. This is a good solution for inside the house. I have not come up with a solution for going out of the house, but my next appointment is next Thursday and I am hoping the drains will come out, if not, I will have to come up with a different solution. Or maybe not, it is winter after all and I can hide it behind my winter jacket. I will need to get outside hopefully soon to walk more, but right now I am staying inside and eating nutritious food and resting and doing my arm exercises and walking inside to build up strength and avoid all the flu people (!)
It's funny, I did have a cry when I was told about everything, but only cried today for the first time since then when my husband said he thinks we shouldn't bring my dog home from my sister's. My pup is such a part of my heart, it just hurts, but I know his intentions are good. This is the first days out of the hospital and the first days I am not being pumped with antibiotics all the time. There is still so much that can go wrong, but missing my dog is bringing out the big baby in me..(!) boohoo! He is doing so so so much for me and has cared so much, I understand his fears and this one thing is our friction of the day.
I will add more if I think of anything useful.
It is so good to be home, I just want to get lost in the internet and this good book sitting next to me and a good series and movies and some silence but I must also get up get up get up and move!
0 -
lifewins.. thank you thank you thank you for sharing your surgery story! I am so thankful you are doing well and it offers me so much hope for my upcoming surgery this week. ❤️🙏🏻
0 -
life wins, I am so happy to hear that you are doing so well! I understand about missing your dog! I did not get to love on my Bella for the 1st 2 weeks following surgery! It is for the best! Praying for an uneventful recovery. Hugs, Lis
0 -
Lifewins - great to hear your story and that you're back at home. Recover well.
0 -
Hi Ladies,
I had mastectomy and DIEP Flap reconstruction on 11/7/2017. I am pretty well healed now 3 months after surgery, but I still experience some pain intermittently. I was scared going into such a long surgery and almost backed out of the the DIEP Flap reconstruction at the last minute. I am so glad that I went forward with it. Doing both procedures at the same surgery was a challenge, but I cannot imagine doing it any other way.
I was in surgery for 8 hours and post op recovery for another 2 hours before getting to my CCU room. I expected pain when I awoke, but I was surprised that I felt more like I had a Roman Shield on my chest instead of actual pain. I was too nervous to look down at my chest until day 3. When I did, I saw my freckles and my own skin - just as it was prior to the mastectomy - and that reduced my anxiety so much. Not knowing what to expect, I think I imagined looking like Frankenstein's Bride. I was relieved to see myself. That may sound strange, but to me, it was a relief and very comforting to see familiar skin.
I reduced pain medication as fast as possible in the hospital because I wanted to recover at home. I got out of bed as quickly as I could and walked the halls with the PT twice as much as they asked of me. Yes, it was uncomfortable and a little bit scary, but I wanted to go home!
We have 3 dogs and I wanted them with me. So we let each of them come into see me, one at a time, and explained that they could not jump on the bed. They all three seemed to know exactly how to behave. They were happy to see me and slept by me everyday - taking turns. I had a recliner moved into our bedroom and I slept there for a good 10 days. So glad we did that! It was much more comfortable than the bed.
I also got one of the U shaped pregnancy pillows which was genius! It snuggled me on both sides and kept me from rolling over on my sides. I highly recommend getting one of these for recovery. In fact, I still use it. At three months, I still cannot sleep on my side without supportive pillows placed strategically. But it is sooo much better.
I walked, walked, walked to speed my recovery. My sweet husband walked with me for support - both literally and spiritually. I let my family take care of me and all of the house work. The mental distress and recovery is a roller coaster ride. Not a straight forward or steady progression. I would feel better one hour and then I would feel lost and alone in the next 3 hours. Forward and backwards....over and again. I slept, watched tv, read books, and just allowed myself time to grieve and heal. It takes time to process everything. Give yourself that time and take the help that is offered. After 4 weeks, I was starting to look and feel like myself again. At six weeks, my mind had settled and anxiety was decreasing quickly now.
Each of us will heal and recover at our own pace and in our own way. But it really helps to write and talk and be with other women who have gone through the same journey.
0 -
deehenn, welcome to our 2018 DIEP discussion group. Thank you for sharing your experience. It sounds like you are recovering well. It gives me hope...I am 11 days from my surgery. It sounds like the emotional recovery goes about the same as the emotional roller coaster ride of this whole cancer journey.
Blessings..
0 -
deehenn, thank you for joining us! It is so helpful and encouraging to hear the experience that others have went through.
Bella2013, do you feel ready? Do you have to travel very far to your hospital?
0 -
hi Bella2013. I am happy with the results so far. I am told everything is completely settled after 6 to 18 months. This surgery is complicated and requires much patience.
Recovery varies from person to person. I am still recovering.
Yes, I am experiencing weight gain. My absolutely best advise is good nutrition and lots of exercise before this surgery. You will be glad you did.
As for recovery, we all hate the drains. It took me 4 weeks to rid myself of them. It was not fun.
More later
0 -
ahhh, I wrote this really long post and it disappeared when I hit submit so forgive me if both end up showing up.
I’m still concidering if I’ll get bilateral DIEP or uni and an implant. At my consult my surgeon gave me the options and really didn’t give me the idea that one would be better than the other. He said I had enough for bilateral but would be small and an implant could be placed later. So my question is, isn't one implant better than two? I mean, I know I’d rather not have any and maybe the risk of doing bilateral is best because I might be ok with the size without adding implants. I know I’m supposed to just be happy the cancer is out and not so much the esthetics but it’s important. If he was judging by my TE then I’ll be quite small, maybe a B. I’m not big but not small either, I’m 5’9” and carry most of my weight through my hips(don’t want to use them though lol). When I was fitted for my prosthetics(before I got the TEs) it really made a difference in how balanced I looked and they were slightly bigger than my TEs. I lost one of my TEs during rads so that side will be my difficult one, the other side that still has the TE feels like it could hold a slightly larger implant because the skin doesn’t feel thin or tight at all, but I’m no expert. Also, I had skin and nip sparing. Maybe I’ll ask to see him again, maybe at pre-op the week before, and take my prosthetic for reference. I’ve only met with him once and that was information overload so I have had some time to digest that and come up with more specificquestions...and confusion. Lol
0 -
TWills-what about a stacked flap? I know you say you'd like to not touch your hips but what I can tell you is that after the tummy is gone from the DIEP, the hips don't look proportional anymore. They fix that during stage 2 with lipo. So why not go ahead and use the hips too?
0 -
I hate it when you’ve worked so hard on a post and lose it during the submission process. One trick I’ve learned is that if the post disappears, click the back button on your browser. It will take you back to the post you were writing. Check to make sure your last few sentences are still there. Then click ‘Preview’. Then from Preview screen click ‘submit’.
0 -
Good to know that about lost posts Lula thanks:)
As far as using my hips go, I don't think I have enough to work with, although I could benefit from a bit of lipo they aren't really that big. I'll ask the surgeon though. I don't think loosing my belly will make them disproportional, mostly because the belly is fairly new, lol. Shape looked great heading into my 40's. 😂
0 -
TWills-the stacked flap would be DIEP + SGAP. You’d be surprised how much extra padding is in the hips when you gain weight with the pear shape.
0 -
I know, it just wouldn't add that much to my DIEP, I'm not that much of a pear, I’m a thiner pear I guess.I have enough for some filler though, if needed. I wouldn't to two major harvest sites anyway, lipo yes.
0 -
TWills, I do feel ready. I am anxious and excited. Anxious that this huge surgery is looming in front of me...excited to kick cancer’s butt and start living on the other side of this surgery. I am getting a lot of support and positive feedback from my breast cancer team. My RO said my BMX with my cancer stats was like hitting a fly with a sledgehammer. I like that image...it’ a exactly what I want to do!!
I have to travel about 10 minutes to get to my hospital! I am very fortunate in that regard.
I just have to remember to breathe once in awhile
0
