DIEP 2014

sky78

Thanks for the welcome! 

Aside from the fear of not waking up and leaving my children motherless (haha!?!?!), I'm dreading the first few post-op days. I don't tolerate the anesthesia and meds well. I couldn't hold much down for the first few days, despite them giving me every anti-nausea medication avaiable. I didn't start feeling better until I was off of everything except for percocet which one doctor told me is better tolerated because it is more of time released pill compared to oxycodone which is quick release. Of course, the pharmacist told me that was wrong and I said, true or not, one makes me barf and one doesn't - give me the one that doesn't!   Anyway, the meds made me so sick that I couldn't sleep well so I am ever so thankful for my tablet and the option to watch TV online!!  The hospital TV options were sad and the shows on at 3am even sadder! Here's to looking on the bright side!

lovecat3

hello all scheduled for DIEP 9/25 has anyone also had a lymph node vascularization for their lymphadema ? I have arm lymphadema but my trunk area much worse

If so has it helped you? Pros cons?

Thanks

Ridley

Janet -- I'm sure he's heard it before!

 

ChrisInPA

Hi sky78,  You are just 3 days before me this fall.    I don't know if you have tried it, but there is a transdermal patch called a scopolamine patch that you can wear for up to 3 days behind your ear for nausea.  I have always had a weak stomach - my mom used to grind up dramamine between 2 spoons and put it in apple butter for me before I had to be in the car more than 30 minutes.  Heh.  I used the patch for my BMX and never even felt a twinge of nausea.  Heres hoping it works next month as well. If you haven't tried it, its worth asking about.

sky78

Thanks, Chris.  Yep, I used the patch.  I can only imagine how much worse it would have been had we not. Odd though that chemo never made me that nauseous! I'm just weird I think!!

philomene

when I woke up from surgery my breasts were hard, I guess from swelling. Now some spots are softer. How long does it take for DIEP flaps to soften up fully?

Teacher64

I used the scopalomine patch for DIEP in March and again for stage 2 in July but had a horrendous allergic reaction to it in July. Hopefully, no more surgeries because the patch is out now.

Kb33

hi ladies.  Just returned from my little last woohoo weekend before surgery.  I think it still has not hit me that I leave for surgery in 5 days.  I'm trying to focus on getting kidlets off to their first day of school on Wednesday and then everyone organized for fall schedule... Work items all cleaned up for at least two weeks... Clean the house, etc.   I think I am avoiding the thought of the surgery.  In some ways, I'm finally glad it is here.... Everyone has been pressuring me to set a date since may.   But, a part of me wishes I could just stay busy and skip it.  Silly I know.  But it's hard for me to make the choice to do the surgery.  

I'm so glad for this board, I think it has helped me understand that I need to lower my expectations right out of surgery.   But I have to admit.... I'm really struggling.  I keep telling myself I am being vain...   And I need to ensure my 3 girls have a mom as they grow up... Since there is no one else.... But somehow that dang vanity over breasts I didn't know I liked so much would make me second guess myself every day.  I worry that this long, long road to recovery everyone talks about will not help.   

So.. Tonight I am trying to focus on healthy healing after surgery.   Since I will be traveling from ny to NOLA.... I will actually be there two weeks.   Wondering if anyone would change the simple packing list knowing that you would not be going home straight after the hospital?  

Also, curious on helpful things to do to enhance recovery.  Walking as soon as possible?   Wasting with special soap?  Vitamins?   Lotions?   I am all in to make this as easy as possible....

I'm also only doing one breast so I wonder if getting into tops will be easier with one arm still having rom?   I am a BIG tank top kinda girl... Lol

MsW2012

kb33 I can help a little on enhancing recovery. My PS had me start a multivite and extra Vit C a couple of weeks prior to surgery. Also just eat healthy and stay as active as you can going in. Stay hydrated and do whatever you can to minimize stresses. Afterwards, be sure to get plenty of protein, and walk. I started out with half a block each day then slowly worked up.

Like lots of others here, I agree pillows help a lot. Its really hard to get comfortable the first couple of weeks at home. My take-home instructions also said try to sleep on your back but sleep is so important, side sleeping is OK if it's most comfortable.

We w

MEG2

Thanks so much for the add-on advice ~ I am copying all your tips and tricks.  Constipation is not our friend!

MsW, I appreciate the advice about not expecting too much.   My feelings of late have been a sort of anticipation of leaving the hospital with a breast (rather than w/o one as with the MX) but know I will fall hard with the wrong expectation.  I will re-set my thought process to be aware of the changes and challenges to come.

I especially appreciate the comment that reconstruction does not return you to your same breast/body.  Will be interested to hear the stories of the ladies who will have surgery in the near future.  Peace to you all.         

Tan72

MsW2012, thanks for the reply, I was told if I went straight to the procedure within 6-8wks after chemo ended I could bypass 33 radiation treatments, I am a little over 6wks out and have surgery next week. Has anyone else been told this? My mom was diagnosed with stage 3c ovarian cancer in October and 3wks after she finished chemo I was diagnosed with breast cancer (during my baseline  MRI after BRCA diagnosis) a month ago my uncle was diagnosed with bladder cancer, needless to say others are now being tested. Half of me wants to run and the other just wants to get over this hurdle and move forward.

 Thanks for letting me rant, I hope everyone is doing well.

On a side note I see a lot of delayed nipple reconstruction I was told mine would happen at the same time as first surgeory, anyone else have that?

Having it at CPMC Davies campus. Dr. Grisson, Dr. Buntic and Dr. Horton

vballmom

Second follow-up with the PS. He says I look great and cleaned up some of the messy stuff on one side.  I am now 3-weeks post op and he says I am ready to ease back into real life.

For those planning what to pack...honestly, I used nothing except my electronics.  I thought hubby took my suitcase home, but I actually had stuff and didn't know it.  I didn't even wear underwear because it hit my drains - if you do bring panties, get some teeny bikinis!  If I had to do it again, I'd bring an extension cord. I was constantly asking my nurses and aids to plug in my phone or ipad and honestly, they have much better things to do than offer this service! I was also unable to use my ipad much, as it was too much for my arms and the morphine haze did not help. 

I had some serious nausea and dry mouth following the surgery and they gave a tube of Biotene Gel. This stuff saved my life. It help get rid of the dry mouth and the awful taste. I also used a cup with a little water and mouthwash with a toothbrush to help with this.

My diet was unrestricted, so tell your family to bring you real food!    Mine never did, but gosh, it would have been nice.

Ridley

Tan 72 -- I didn't have chemo, but had a lumpectomy first and then almost 3 months later had bilat mastectomy and diep recon.  I was able to avoid radiation by having the mastectomies (had invasive cancer in one side and DCIS in the other).   As I understood it, the reason was also because I had no spread to nodes, and the location of the cancer.

Ridley

GeorgieGirlKC

Good morning! Just catching up on the posts. Been a busy few days out here! Nice to see everyones updates! 

Trish I had lipo with stage 2. P.S. took it from outer thighs and also from reconstructed side breast area. Not sure if everyone gets it though?

Heiditoo, re-sleep, I  take a sleep aide because I suffered from insomnia after the diagnosis last year, especially during chemo. What I have noticed though is that where the sleep aide only helped me to sleep about 4 hours at a time, I know can take it and get a full nights sleep post diep, if that makes sense. I still feel tired and will sometimes take a nap in the day. I am about 4 months post diep stage 1 and almost 3 weeks stage 2. I am strongly considering weening off the sleep medicine to see what happens but also know how important sleep is to healing. Appetite has reappeared in full force but find if I eat too much or the wrong thing I pay for it with upset/tight stomach. We are all still healing so I'm thinking wisdom in following our bodies lead. 

Lovecat hard to tell how you will feel for your PURR for the cure. I bet you will be able to participate would caution on pacing yourself that day for what you do. Everyone is different. I was walking a lot by that time but not very fast...If I over did one day it showed up the next day so my body told me what was going to fly Or Not. That is so awesome this is your 5th year. Sounds like you are in good shape going into your surgery so you are already ahead, going in strong! Haven't known anyone to do the revascularization but think PRMA does those and are experienced. I got your PM and will PM you back after this post. We have a medical ctr here that is starting to do those with good luck so I hear.

Butterfle I hope you can find a way to go to those support groups or find one that meets in the evening. Glad you reported Mr. Boss to HR. There is no room in this world for that kind of behavior. 

Meg2 welcome back to the forum and congrats on your date. It will be here before you know it. I too had a uni in May. Stage 2 last month. Sounds like you got some good posts from others (teachers is spot on and all inclusive for sure) re-what to bring how to prepare. Nothing I have to add except to maybe take some of your own pictures, that way you have pics of your progress, changes, etc. 

Debiann congrats on your date too. Chemo definitely sucked more than DIEP.....The DIEP is a process but nothing like chemo where you sit and anticipate the next dreaded date of infusion. 

Hi Lemon, was glad to see your post, have been wondering how you have been doing Cinco friend. Sorry you have been wrestling with the blues too. This whole process is such a roller coaster. You are not vain about your hair. Stress, meds, all that stuff just assaults our poor bodies..  I think your response is totally normal and just like so many of us wish we could have our old bodies back, including hair. Just wish we could all be together sometime to meet, console, compare, laugh and cry. This is the best next thing. A cyber sisterhood. Lemon, know that we are all out here for you. How are you doing 1 week out? I hope you are able to rest some and not having much if any pain.

Sarah, I think you are wise to schedule your Diep for when it works for you and your family. You will go into it feeling much better about it. Please hang around! It is nice to read your posts and input and we will be here for you too in 2015! 

Tlbradyful glad you have moved past the blues. How is your son?

Naiviv loved your post about the double swim suit and sassy hair!! That made me smile and so happy that you had a nice time at the beach!

I echo MSW2012's post about expectations after the Diep. Know that it is a long process and that it takes a long time for things to start looking more normal. That said I wouldn't change a thing about my choice to do this surgery. Just wish I would have been better prepared to expect the in-between surgery and the 1 year mark where scars fade and things look more healed and settled.

Andrea, fat grafting not terrible but did need pain medicine. I had my lipo taken from the outer thighs so pulling compression up and down uncomfortable.

Janet, lol about your dr. He must be wonderful!

Sky78, welcome back and glad you have a date now too. I don't know that anyone has mentioned it recently but a common saying is all you have to do is show up. It is so true but doesn't remove any of the anxiety that is so common with this surgery. Please reach out to this group, much knowledge and "been there" kind of experiences to help along the way. Will be thinking about you in the coming month! 

Lilith, I hope you get some clarity and a comfortable feeling on what to do next. You are in a hard spot right now. Please continue to keep us posted. 

pzercher beautifully well written long post. Spot on.

Ronna best of luck to you and keep us posted on how you are doing.

Goldie, glad the U.S. is helping. How are you feeling and how are the girls looking and how are you feeling post stage 2?

KB33, thank you for sharing your thoughts about wrestling with your thoughts on doing the Diep was vain and worth the risk. I had those same thoughts and I imagine many others have had some of those thoughts too. I think consideration of reconstruction is part of the process of losing a breast and having medical options to restore at least in part our breast.  We are all individual in what works for us, going flat, just one breast or reconstruction and none of it is vain, it is part of our healing. The DIEP has a very high success rate.  I hope that you are able to focus on what you mention in your post about healthy healing. Walk, protein, rest. Let others help. Sending you some good vibes! 

Tan you and your family are in my prayers. You guys have a lot going on right now. Glad you are continuing to post and keep us updated. The time frame you mention for chemo to surgery sounds about right. I had my mastectomy 6 months post chemo.

pzercher

kb33: I bought some granny underpants and a couple of knit capri pants with elastic waist--they were a god-send! I also bought several button-up shirts and needed them the first two weeks, but I would say by the third week if you are agile and your range of motion is ok, you can slip a loose, stretchy t-shirt or tank over your affected arm and head pretty easily.

One other thought for the hospital. I brought a stack of books to read and a boom-box to listen to NPR and our local classical music station. Every person who entered my room commented on how nice it was to hear music. I wasn't sure if I would be so out of it that I couldn't read, but I was actually quite alert between naps and got through three novels!!

I also remember fearing the general anesthesia--my mastectomy was my first time. One hears the occasional bad story... But in the end, all of these medical procedures are an act of faith in our doctors and hospitals. I just have to take a deep breath and know I did the best I could in making decisions.

Georgie and seashore: I am planning on the support group on Tuesday 9/9. Will you be there?

For those who had a breast lift: Do you recall what technique was used? Were you happy with results? How has it changed over time?

debiann

How has DIEP affected everyone's clothing size? I'm a teacher, usually get new back to school clothes just like the kids, but didn't this year thinking my size may change. 

Lipglossmommie

Well, it's Been quite a week and God has had many surprises for me. 

My diep surgerery took 13 hours. UCLA is amazing. I had bad scar tissue from both my c section and gallbladder surgeries. 

My right flap is amazing but my left non cancerous side has failed. The blood circulating in was great but outward was struggling. They tried leech, yes, you heard that right, leech therapy for 48 hrs. Man, was that rough. Every two hours a little leech was suckling on my breast trying to suck up the blood that was accumulating faster then flowing back out into my breast. It was getting harder, blue, bruised and black. I could not take that damn warm blanket anymore, the constant care. He went back in to see if the blood flow was working clean up a little and see if that would work. If not, then I would lose it and  we will just reconstructt again. 

I also had a blood infusion. It's all over and done now, I'm waiting to go home. One big great and the other is caved in, man, cancer is nasty.

Dr says he took out all the cancer and am still waiting on lymph node biopsy results. He took 6.

Now we wait and heal. When I'm all healed up, we will resort to plan b, whatever that is. Probably an expander. No way, will I ever go thru another flap from somewhere else on my body. 

Till then- onward and upward! 

Marianne52

I need some help deciding what to do. I have had two opinions from two different Doctors at two different hospitals. The fisrt one wants to do a DIEP and the second one said I would have to lose 20-30 lbs before he would do that and wants to do a Latissimus Dorsi flap.

I have been up all night researching both and can't make up my mind. It also makes me a little nervous wondering why one Doctor thinks it is ok to do the DIEP and one doesn't. Any help would be appreciated.. Thank you..

MsW2012

tan72, about having surgery 6-8 wks afer chemo, my ps also said they do the DIEP close behind chemo all the time but it sounds so overwhelming. I imagine the healing process would take longer. I finished chemo in Sept. of 2013 and my onc says my immune system is still not back to 100%. It takes a long time. So it's a weighing of benefits/downsides. Good to get everything over with for sure, just probably a longer recovery. Check with your surgeon. Also I didn't think radiation was bad at all. Just inconvenient to have to go there every day. I wouldn't like feeling rushed into anything.

About doing the nipples at the same time, if you trust your surgeon then I wouldn't worry about that. They should know what they can do. Each of us is unique, that's for sure. Oh, I see you have my surgeon! I trust Dr. Horton to know what can be done when. Personally I am confident she would never attempt something she wasn't sure would work. I'm not quite so confident that she understands the challenge of recovering from everything. She knows it's all going to be fine in the end, but again imho, she doesn't think so much about how tough it is for us to get through. Maybe discuss with breast surgeon too.

GeorgiegirlKC, you sound just like me about sleeping. No matter which pill I tried, they all gave me four hours only, when I was in chemo and for a while after. For me it was all about stress. What I ended up doing is trying to meditate before bed, which for me is prayer, and do my best to put everything aside until tomorrow. Sometimes I succeeded and sometimes not, then I'd take the Ativan - that's the one I ended up using most. Not a sleeping pill but it worked. I found I used the pills less and less over time. Started again after DIEP but haven't used any since Week 6. I'm with you, don't like to use any med if I can avoid it but sleep is too important to tough it out. I also agree it's a great idea to take your own selfies to follow your progress. I wish I had started earlier.

debiann, about size change, we're probably all different. I found I was much bigger after DIEP but am still in the process of shrinking back down. You will need some bigger clothes for at least several weeks. I wouldn't invest in a bunch of bras right away since things will change for a few months before they're final.

Marianne52, the conventional wisdom there is ask the two doctors to come to an agreement on what's best for you, but DIEP is relatively new and one surgeon may well be more confident about a specific choice than another. I would say if you have faith in both, then I would trust each one to know how he or she can best help you achieve your desired result. If you want to go ahead with it, I would go with the one who says he or she can do it, which is probably the one with more experience with that particular situation.

I have been feeling very calm and confident lately, enjoying being intervention-free and I thought all the stress was behind me. Now that my first follow-up with the ps is coming up, though, I am getting nervous all over again. I have complete faith in her abilities, but we don't communicate well. I feel like I need to work hard to prepare how to address her in a way that is not threatening or uncomfortable for her. Isn't that supposed to be her job? Oh well. I'll take ability over sympathy any day.

Wow, looks like whatever I do, everything gets run together. Sorry about that. It would be easier if we could make paragraphs! oh well...

Sarahbb

I've been reading, but haven't had time to comment. Thanks for being such a wonderful group. 

Marianne: It might be that one surgeon has more experience with one procedure over another. My PS is having me lose 15-20 pounds before he will do DIEP.

Sarahbb

Lipgloss, I am so sad to hear about your lost flap, and after such a long surgery. Please keep us updated!

butterfleyez

hello ladies! 

Man it's hard to keep up with this thread activity. Good to know there's so much support. Just to throw in my two cents. There is a thread on packing before surgery that has some really good lists and advice. One thing I found to be true as well is that of all the things I packed I only used my phone and mostly for music and browsing. Meds and surgery made it hard to read/focus. I didn't wear underwear for about 2 weeks. Drain placement just made it too much. It was quite liberating actually lol

After surgery I had rented a lift recliner and I almost cried when they came to pick it up a few weeks later :-) it was my way of having some independence in getting up on my own. My bed is pretty high. I was shuffling around my house within a few days of surgery. I know it's been said but it can't be stressed enough.. Stay on top of constipation! That almost sent me back to the hospital a week. Never been so happy to poop :-)

I've got one more week in compression 24hrs and in this Texas heat. I really hope I can take it off. It's driving me nuts. 

Tan72

Marianne, I also visited multipe surgeons, one didn't do the DIEP, one said i'd have to lose about 30 lbs and the last one who works as a team with another PS both  said I was a good candidate. I did some online reviews of the doctors asked how many procedures they had done etc.. and the one who mentined to lose weight had a higher failer rate and had done less surgeries (that may not be your case) so I went with the one who seemed confident that they could complete the procedure and I am scheduled for surgery a week from tomorrow.

Marianne52

Tan 72,

I have only seen two PS's. I am going to see my ONC tomorrow and will ask her advice also. I know I want to have it done but am torn between the two procedures. The one that wants to do the DIEP has 5 good reviews and 5 bad. So how is one to know what to do? I am also nervous because I am 61, a lot older than most having this type of surgery. I wish you the best of luck with your surgery. I am sure I will feel better if I can ever make up my mind. Marianne

annieb4

Lippgloss...leeches...ugh...that just gives me the whillys. I would have to be on some serious meds to be able to handle that..Good luck with that dang flap. Hopefully is does what it is supposed to.  If it doesn't , would they do another flap from somewhere else? You said an expander, than an implant? and why would you not go with another flap?

You would think, that after all this crap we have gone thru..this should be a breeze..

It sounds like some of us get different answers, and not sure of what we should do. I still second guess myself about this surgery. I think because it just scares me getting cut up like that. But then I come on this board and you guys are all so great, it really eases my mind. At least we shouldn't have to many surprises.I don't like having to wait until January but I am kinda glad I am waiting until winter..at least I won't have to deal with the dang heat..but then I won't be outside walking around, since our average temp in winter is like 400 below zero !!! (OK slight exaggeration) but it is North Dakota and yes the winter sucks. I will need to get my treadmill back from my DD. 

Happy healing to you all going into or just getting out of surgery.

and MsW2012.. very good post..even tho no paragraphs.. at least your punctuation was there

ChrisInPA

Marianne52, to echo what some others have mentioned, it is likely their comfort level and skill set.  What one doc does well another may really stink at.  Given that this is 'surgical art', you get to choose.  

LiLi-RI

Marianne : I am not sure which hospital in Boston, but I had my procedures at BWH. I actually used the recommendation from my BS---the BS knows the field of experienced PSs. If you wish to know my PS, just send me a PM. Best wishes for a great discussion with your BS. Lisa

ChrisInPA

How did I miss the post about the leeches?  *shiver*  Hopefully that is just a figure of speech, right? (?)

Amazes me how different doctors are.  BMX was compression, hibiclens, pre-surgery meeting with the anesthesiologist, no nail polish, no showering with the drains in, and drains out in a week regardless of fluid levels.  PS wants no compression, no hibiclens, I meet the anesthesiologist the morning of surgery, nail polish is not a problem (except index fingers), can shower right away, and the drains stay in until under 30 for 3 straight days - even if it takes a month.  I will never understand why they are all so different.

LiLi-RI

My instructions from PS were the same as yours...no compression...ok to shower...and drain levels.

Andrea623

Oh lipgloss, what an ordeal. I'm so sorry to hear you lost one of the flaps. My heart goes out to you.