DIEP 2011

maraschino · January 2011

This is my first post on any board anywhere. I have been reading this site for about three weeks and am thankful for all the information shared by everyone.

I live in Ontario, Canada, and am scheduled for the DIEP on 1 March. Am terrified and go back and forth on whether I can get through this or not...worried about complications...

My diagnosis was last March and four days later had left mastectomy and surgical biopsy of right breast. Three weeks later, second mastectomy of that breast. I've become accustomed to no breasts and am not adverse to living without them for the rest of my life, yet somehow wonder if I would later regret not having reconstruction.

I had planned for implants but because I had RA and other autoimmune disorders this was not an option. Imagine my surprise when the PS recommended the DIEP! (You're going to WHAT?)

Any suggestions, advice, words of wisdom are great appreciated.

Del11 · January 2011

mscal02: check out the message thread called "NOLA in September", I'm sure several people there can give you advice about going to NOLA.

marxi · January 2011

oops...diagnosed 2010...not 1959 (typo)

momtomygirls · January 2011

Hi maraschino,

I'm scheduled for my DIEP June 20th. I live in Ontario too. PM me if you would like to chat

Cheryl

kelben · January 2011

I live in Ontario too and going for consult for DIEP in February. Hoping to have surgery sometime this year.... waiting is not my forte.

mscal02 · January 2011

Thanks. I will try there.

scubacat · January 2011

maraschino, I too struggled with the decision of DIEP versus implants. No issue on recon I knew I wanted to do that following my BMX. I talked to my PS and asked why he recommended DIEP versus implants and got his opinions then I just made my own decision based on what I knew and what I wanted - which in the end was for me, to be more "natural" with my own fat and blood vessels. Get all the info you can, ask all the questions you want to/need to and then make the decision. Once the decision was made I started to look forward to moving ahead with it. My DIEP is in 10 days time (24th). Best wishes.

rayofsun · January 2011

hi everyone, def felt like i turned a corner today. My pain is much less, I feel like I am walking more normal and not as guarded to get up and change positions. I hope this is encouraging to those whose surgery is coming up. A nurse visted today and said my incisions look good, they are healing well, it is amazing how quick one can heal. My left flap is still visibly bruised and can take a while to return to normal but the flap took well. People keep asking to visit and I told them starting this weekend is great. I also found a good way to keep the drains secured to my body if needed, am using those finger tip bandaids and the shape is perfect and it stays well secure.

Ray

happy2bhere · January 2011

Hello All, so glad to hear Ray of Sun is doing well and has turned the corner. This is what we all need to hear. News like this gives us all hope - thanks so much for sharing.

My Bilateral Diep is scheduled for this Thursday 1/20 at the University of Washington. After a year, these expanders will finally be out. Went to my pre-op last Friday and had a physical, CT scan and an appointment with the anesthesia clinic. The anesthesia clinic was especially helpful with information on what to expect post surgery. After a possible 12 hour surgery my husband and family needed to know that I may not come off the breathing tube for several hours and that his is okay.

Have been dealing with a the last minute things such as purchasing the lightweight bicycle style pants with the tummy support and athletic bra's with a nice soft band around the bottom. Still need to get some personal items such the moist wipes to be able to freshen up at bit until I can shower. Also, getting things together at work before I go on leave. Having my mothers 80th birthday party here at the house this weekend is a great diversion and will be great to spend time with my family. Staying busy up until the last moment really is helping me with the jitters and believe me I have them now. I think the anticipation is the most difficult part at this point anyway. My Diep was scheduled almost a year ago and I have had lots of time to think about it. Now it is finally here.... just want to move forward and get this behind me.

To all of you who have given such valuable advice thank you. To those who have the DIEP scheduled in the day or months to come I hope anything I can share helps you. Last of all to CalamityJane, we share the date. My thought and prayers are with you. Will stay in touch.

marxi · January 2011

scubacat, happy2bhere: i will be thinking of you both in the days ahead and hoping for the very best outcomes possible from your surgeries. please keep in touch. i am anxious to hear all about others' experiences of the DIEP.

is remaining on the breathing tube following long surgery a possibility for everyone? my bilateral DIEP will be approximately 10 hours and my PS did not talk to me about this...something else to worry about...

rayofsun: you sound so positive. thank you for sharing your successes.

snowflower · January 2011

Hi Mirachino,

I had a unilateral mx with diep flap done 30 days ago. I was scared about what it would be like even though I'd read a lot about it. It felt good to wake up and have a breast there (although the nipple will be later).My surgery was 5-6 hours, but that was for one breast. In the recovery room a nurse stayed with me all night (giving me ice chips) and checking that everything was working well. They'll give you plenty of pain meds and you will get through it fine. They got me up the 2nd day to sit and I think I stood on the 3rd day. Also showered on the 4th day. When I got home I had to walk up 3 flights of stairs to my apartment but that was not difficult (sirprisingly), my friends helped the first 3 weeks doing groceries, vacuuming, and all that stuff. I had been given pain meds which I used a lot the first 2 weeks but tapered off so the past week I have not needed to taken any. A visiting nurse came 2 times to check me out (I had 3 drains in). They would come more often if needed. They will show you how to empty the drains before you go home. Before surgery I ordered 2 terry cloth belts (with velcro) and a pouch that held the drains when showering. The hospital also gave me a little jacket with inside pockets for the drains. After a few days at home I started taking short walks around the neighborhood. I'm grateful I have not had any complications and by the end of the 3rd week I drove the car (very stiff when I have to twist to look back). I'm taking a few more weeks off from work to heal and rest up. My recovery has been made most difficult because 2 days before surgery I had to have my dear cat of 10 years put to sleep. I was looking forward to being with him during my recovery and I'm grieving his loss deeply. I like my new breast although it's still sore and swollen but they say that it takes a couple months for it to settle in. I went to the gym yesterday & today to walk on the treadmill and used 1lb. weights (very carefully) and though my incision and stomach still feel numb and stiff, it's getting better gradually. If you have any more questions just ask!

God bless

Kim

marxi · January 2011

Thanks, Snowflower, for telling me about your experience. You are doing so well! I am so happy for you. I literally can't sleep at night I am so afraid and go back and forth on my decision because I'm worried about the recovery period. Also, I have RA and won't have much help afterward (I think a friend will come and stay for a few days). I pray I will be able to come to peace and make a firm decision to go foward with this on March 1 and that everything will go well. I question whether I 'need' breasts but I hate the prostheses...do women who have had this surgery feel that it helps to put the breast cancer horror behind them just a bit?

Marxi (Maraschino)

rayofsun · January 2011

got up early this am, emptied my drains, each is 30 mls or les so hoping can get them pulled tommorrow at my follow up appt. Percocet one tab every 5-8 hrs now. I am thinking the binder they will put me in is gong to be more for deceasing internal swelling as opposed to support. I feel well supported. My breasts really dont seem that swollen to me, maybe some as well as my belly but upper as opposed to lower. It feels good to have the expanders gone, they certainly did their purpose, but they were bothering me towards the end with their taughtness. It feels good to have soft breasts now and a flat belly. As far as numbness I have some sensation in my breast area, I had had a reduction years ago so lost sensation then an it seems mostly the same. My belly is numb but seems so more than when I had my 2 c sections. My arm movement feels good, keep in mind I had my mastectomies in april, I am limited of course to only lifting 5 lbs and no arms above my head. When i do pick up some things I doi feel it in my belly even as small as maybe 2 lbs. Alot of the glue has begun to come off and if needed I am securing the areas with steri strips that my nurse gave me. Feel free to ask me any questions on here or via private mail.

Ray

kelben · January 2011

thanks for all the information guys, it really helps me to figure out what plans to make for when I go.

Continued good luck with your healing and please continue to keep us posted.

Kathy

marxi · January 2011

Snowflower, I wanted to say as well that I am sorry for the loss of your dear pet. I have three cats and when I had my mastectomies (31 March & 26 April 2010) my Himalyan, Marshmallow, was beside my all day every day as I worked through recovery. I can understand how precious your companion was to you.

mamaoftwo · January 2011

I just wrote a long reply but for some reason it got erased. I will summarize as I don't really have the energ to recreate the whole thing. Surgery was Jan 12 8:30-4:30pm. I am still at NYU and plan to be here until Monday or Tuesday, whenever they throw my out. Still ina substantial degree of pain. I am coughing, which hurts after abdominal surgery, mostly becasue I came into the hospital with a cough and it got worse. They are throwing a lot of lung-clearing medications at me.

Surgeons were excellent and my family has been so supportive. if I were to do this again, though, I would probably skip reconstruction. The pain is just too serious and long-lasting. This opinion could change ina couple weeks and I don't meant o discourage those who are having DIEP in the near future.

ON the good side, I am walking around the floor a bit, eating solid foods, and sleeping well. What a surgery.

marxi · January 2011

Mama, hope you feel much better soon! So, the pain meds don't cut it? That is my greatest fear. I'm glad you posted this.

rayofsun · January 2011

mama sorry your are having such pain, i am guessing cause I had c sections previously and my mastectomies before it was easier for me. I think the pain was tough in the begining but also found the quicker i got mobile and the more molbile I am the less i stiffen up per say. Moma do you have an internal pain pump called the q pump? I had that and it def made a big difference, It is a pressurized bulb that delivered medicine to my abdominal incision consistently. I remember when I had my first c section I said I would never do it again but I did. Moma I am sure you will feel better soon. Yes there is pain but I would not discourage anyone from deferring reconstruction if yoU really want it.

Ray

CalamityJane · January 2011

Happytobhere,

Thanks for the thoughts, I am just across the water from you in Victoria. I am getting the nervous-nellies right now, anticipating the big day...we'll have to share notes when we wake up Laughing

Thanks to everyone posting your information and stories have been a god send.

CJ

scubacat · January 2011

marxi, you really have to want this and do it for you, not because someone tells you it's the right thing to do. Everyone has different pain thresholds, some high, some very low, so that's the different info posted here by different individuals. We're all different. My PS told me (I'm bilateral diep) to expect 10hrs or surgery, followed by 2hrs+ in ICU before they move me back into my room after recovery. Nurses will come in every hour to check blood flow (using doppler) and all other tests during first 24hrs. I have not heard anything about breathing tubes remaining in, but after my bmx I had additional oxygen for at least 24hrs. I have spoken to another lady here in Dallas who had this surgery done 4 weeks again with same PS as I have, so I suggest you try and find another patient to talk to as well - this helps. Ask your PS for reference names. Good luck with your decisions.

BJB1 · January 2011

Hi DIEP gals. I am booked for 2/11/11 at B/W Boston with Dr. Gau and Dr. Pribaz as PS and Dr. Rei for the mastectomy. I am more concerned about the SNB than I am about the micro surgery. However, I am very anxious about all the microsurgery.

Hey. I just realized: I am having transfat surgery. Geeeeez.

BJ

BJB1 · January 2011

Hi Snowflower,

I see you're not too far away. What hospital did you use? I will be doing my DIEP at B/W 2/11/11.

Thank you for your posting of the details. Knowing exactly what to expect takes some of the fright away. I hope you are continually getting better and happier.

Did you find out much about lymphedema before surgery?

If you need a helping hand, someone to run errands, I would be happy to help.

BJ

rayofsun · January 2011

Saw my plasic surgeom today and told all healing well minimal swelling, I was able to get all 4 drains pulled, what a relief. When I had my bilateral mastectomy I had to wait 3 weeks to have them both removed, one came out at 2 weeks first. The abdominal ones felt weird when being pulled, I could feel them in my stomach and I felt spasms. I am crampy from that now, boy were they long inside. I am to start wearing a binder for at least 2 weeks. I dont love the feeling of it but will get used to it. I was told I can drive three weeks after my surgery which is nice. I return to the plastic surgeon in 4 weeks unless I have issues. I can sleep on my side now, thank goodness, I really missed it, I will still used the bed wedge and extra pilows. My appetite is still not great, I have to eat small portions or I get filled really quick and feel the pressure in my belly.

I will have my 2nd stage in 3-4 months, part will depend on the study i am planning to do at hopkins with herceptin and if I can have surgery and when.

Ray

marxi · January 2011

Way to go, Ray!

marxi · January 2011

Mamaoftwo, how are you? Has anyone talked with her?

mamaoftwo · January 2011

Hi everyone,

My dad drove me home last night (Monday night ) to avoid the snowstorm since we live 90 miles north of NYC and driving in snow on Tuesday was not a good idea.

It's nice to be home. I had the DIEP on Wednesday Jan 12. I did not realize how excruciatingly painful the abdomen would feel. My mother had told me several times she felt little pain and not to worry, but she had the S-Gap (buttock flap). My hospital roommate had the S-Gap and she also reported pain that was minimal. I realized that, even though the GAP is a longer surgery, there's less residual pain because it's a butt that hurts not a stomach. Definitely something to consider if you weigh your options.

Plus women's rears generally have more fat to build a 'real' breast. My breasts are still so small -- barely A cups. But it's nice to have any kind of breasts. (The second stage of lipo surgery later this year can hopefully pump 'em up to a B cup). Some other food for thought for those considering their options and if it's important to you to have a big bosom and real cleavage.

The bad news for me healthwise is that cancer was found in the sentinel nodes, not just the breast, so we are waiting on path reports. I was hoping that taxomifan would be the treatment but I am mentally preparing for the potential need for chemotherapy. I am not going to draw any conclusions or make assumptions until we see the actual path report.

So bottom line - DIEP hurts like h-ll but if you're having a mastectomy like me at the same time, at least you wake up with "real" looking breasts with your own tissue, so you don't feel disfigured from the get go.

Last thoughts - thank goodness for family and friends who sit at the hospital day after day to keep your spirits up. Unbelievably helpful.

rayofsun · January 2011

mama thanks for posting, we have been wondering about you. Each day your pain will get better. My belly felt weird, crampy all day yesterday after I had the abdominal tubes pulled,.I am now wearing the binder which is taking some time to get used too and def makes things feel even firmer. As far as chemo, keep up posted, if it is neded oyu will find tons of support on here.

Ray

mamaoftwo · January 2011

Ray,

Glad to hear from you, and that you're feeling bettter. You're about a week along in recovery from me.

Are you still on pain meds or feeling well enough to skip them? Any residual fatigue? I'm just curious what's in store for the upcoming week.

I've been in the abdominal binder since surgery, that's just the way my doctor does it. I am feeling much better; the mornings are the worst but feeling like each day is better. This is my 3rd abdominal surgery (C-section in 2004), and oophorectomy in 11/08 so I kind of knew what to expect, but this has been more major.

Anyway, its great to be indoor resting and cozy when it's so icy outside.

Laura

rayofsun · January 2011

Mamaoftwo i have still been usng the pain medicine which is percocet for me and am using 1 pill as opposed to 2, i cut down to one pill about 4 days ago and now take one every 4-8 hrs, it depends on my activity. If i try plain tylenol it just does not take the pain away. I am sleeping some on my side now but still need to position pillows and still am using the bed wedge. I am def more comfortable sitting in the recliner than i was before but other chairs i still am guarded.

Believe it or not I just found out that I am going to be interviewed along with my 12 yr old son this sunday on tv for a crane project he is doing so finding clothes should be interesting. But we bc surviviors always seem to find a way to make due.

ray

mamaoftwo · January 2011

Ray:

Very cool! Good luck with that interview! If it's on a major network that will show outside of Maryland, let us know so we can watch.

Laura

DIEP 2011

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