DIEP 2014

KYLady

Hello Ladies,  I have been reading posts for hours trying to reassure myself that I can do this surgery.  My husband has been supportive of my decision, however my 14 year old son is totally against it as I had a tough time with the mastectomy surgery and he is scared.  I am scheduled for January 22 2014 at the Cleveland Clinic in Ohio (6 hours from me here in KY).  I had double mastectomy in July 2012 but due to the fact I had IBC my surgeon suggested I wait for my reconstruction.  I have now been cleared for surgery.  Regarding the drains, are there specific garments that are good for the drains that won't be uncomfortable on the incisions? Also, regarding pain medication, any meds that are better than others, I never take pain meds so when I do I usually end up sick to my stomach.  Thanks for the info......

Cherrie

The docs will give you anti nausea meds to go with the pain killers. I found yoga pants (Kohl's- Sonoma- Life and Style) these were not in the athletic area. I was able to slip drains in the waistband. Also, I pinned drains to the inside of snug camisoles and this held them in place. Then I wore big sweaters and tops. It is short lived. My longest time in drains was 4 weeks. 

intheclub

hi everyone..im having diep tram in a month. Still not at goal weight - im 5ft 10  and weigh 90kg butevenly distributed.  Im thinking of delaying surgery till ive lost another chunk of weight.  Anyone have experience on this. PS  said its up to me but they happy 4 me to delay. Its hard losing weight on hormone therapy.  Im 46 and put on 10kg since treatment

have an overactive appetite!  Any thoughts about this. Thank you so much for reading. 

SouthernGirl1974

Goldie chick we have numerous hospital  here Methodist has their on breast center etc I love my team they are from Kelsey when I was first diagnosed I was trying to get in for a second opinion with MD Anderson but guess wag no call back for days and then no appt avail for weeks so no thank you on top of having friends a best friend who works their I followed my own heart and choose to continue with Kelsey my surgeons are BS Baker and PS is Bullock 

Donna2012

KYlady,

Did you also have radiation?  That usually follows surgery w/IBC.  If so, I am surprised they cleared you for surgery so soon.  I had mx in apr, rads until mid-July & am having diep the earliest I can - 1/24.

jmb5

KYlady, I'm having BMX with DIEP at Cleveland Clinic on the 24th, so we'll be there at the same time. Who's doing your reconstruction? Also, would you like me to add you to the surgery list at the top of the thread?

Donna2012

KYlady,

Just noticed that you had surgery in 2012, I was thinking 2013!

liefie

Intheclub, losing weight on Tamoxifen can be done. For the longest time I struggled to lose anything, blaming it on Tamoxifen. Was exercising regularly, yoga, walking, strength training etc. 5 days a week. Was also deluding myself that I was eating right to lose weight. This went on for a long time, but there was no weight loss whatsoever. I became so discouraged, and knew that drastic measures were necessary. I then cut ALL carbs - pasta, flour products, bread, potatoes etc. as well as ALL sugar - no cheating. My exercise stayed pretty much the same. What goes into your mouth is key. From beginning of August to end of November I lost 14 lbs. The bonus is that now I don't crave sugar anymore, and I've always had a very big sweet tooth! There is a thread on here called Wednesday Weigh-in. Every Wednesday you report your loss/gain for the week, and it kept me accountable every week. I'm back there now because I had put on a few lbs over the holidays, and want to shake them off asap. Another gadget that is a big help to me is a pedometer to help me count my steps per day. It keeps me moving, for sure. Many people sign up for Weight Watchers, or free websites like MyFitnesspal.com, or Loseit.com to track their progress, and have huge success with that. So there are really a lot of things you can do, and you do not have to be a victim of Tamoxifen. Show that pill who's boss! Hope this helps a little to motivate you.

Anonymous

Kylady ...welcome to the thread. So glad you found us.

 It is a big step, the recon. I had stage I surgery in May and I have 14 and 18 year old sons. My youngest had a hard time with my diagnosis and treatment, too. But he is doing great. What was it about your mx that seems to have scared him?

I mostly wore stretchy pants that had a wide elastic waist band. Some people wear maternity pants. Some people prefer skirts. 

I pinned my drains to my belly binder. Some people use a fanny pack to pack them all in. There are other "systems", too. 

People will.chime in....Friday nights are often very quiet on this board

goldie4040

Welcome Kylady, I think sons are sometimes more sensitive to us than daughters.  I know my relationship has changed with my son since my bmx.  I haven't had my diep yet, but I sense his discomfort with the situation.  He is young and newly married with 2 little children, so he is very busy too, but there is something different. Is your son your only child? 

Southern, I am so glad you have a team you are happy with.  That is what I hope I have found this time. I have implants that are killing me, and I can't wait for them to be out!!!!!

Liefie, I agree...the only way to lose weight is to cut those carbs and sugar.  I was told to gain weight, then I wanted to lose a few when I was having my implants, and I could only maintain, then I cut out those carbs and sugar, and the weight came off about a pound or two a week.  Which is a save way to lose.  Not too fast.  Now, I am back to eating what I want.  No being a pig, but not losing. Intheclub, I love myfitnesspal.com.  It's free and makes you accountable.  Then even have an app for your phone.

BTW, we loved Frozen.  My grandson starting whining about half way through that he had enough, but it was not a "boy" film.  Not enough rock'm sock'm for him, I guess, and he is only 5. Sweet and romantic, I thought.

Ridley

Ky. I wore pjs the first week I was home and yoga pants after that (although I just got home from dinner with friends and wore jeans - not as comfortable as yoga pants!). I pinned my abdo drains to the waistband of my pants. Never had a problem with pulling, but make sure the length of the tubes will accommodate going to the bathroom, etc, if you pin them there!

I pinned the breast ones to my top.  I only had those for a few days after I came home, so they didn't cause me any issues.

For pain, I was given hydromorphone, which I think is dilaudid.  Never had any nausea, but I'm fairly lucky in that area.

Welcome to the board!

Ridley

Anonymous

I have used Nucynta for pain the last two surgeries. It's not perfect but seems to cause the least nausea....I use compazine for antinausea but it does make me sleepy.

goldie4040

I am weaning myself off all pain meds and sleep aides.  I don't sleep anyway, so why take them.  I am even wondering what this pain management clinic is going to do for me.  I hope they recommend something I can do physically to feel better, and stop throwing pills at me.  I know I have had 4 anesthesia's in the last 9 months, and I find myself searching for words sometimes.  I hate it. Getting older is scaring me, more surgery is scaring me, I wish I could be off of everything, and bound out of bed every morning with enthusiasm like I use to.  I am tired of my husband telling my grandson to be careful around me.  Don't pull on Grandma, don't jump on grandma, grandma can't do that.  For goodness sakes, grandma use to bench press 50 pounds are year ago like it was nothing.  Now I can't open a freaking pill bottle.  Pity party!!!!!  I am done.

KYLady

jmb5.  Yes please add me to the list.  Dr. Djohan is doing my surgery.   Is he your surgeon?

My son and I have always been very close.  He is so worried because of what happened the night after my mastectomy.  He and my husband were going to go back to their room and my doctor could tell how concerned he was so she ask him if he would like to stay.  He was relieved to stay with me and was asleep in the chair when my oxygen level bottomed out and a team of 10 came rushing in and took me to the ICU leaving him alone until his dad got back to the hospital.  I was in ICU for 3 days.  I had tried to explain to the nurses that I don't tolerate pain meds well and they kept telling me my body couldn't heal if it was in pain and kept giving me more pain meds until my heart rate was up and oxygen down.  They kept saying it was a blood clot in my lungs but it wasn't that at all, it was the pain meds.  The whole experience truly scared him so he doesn't understand why I would elect to have surgery other than for something life threatening.  

goldie4040

Ky, of course that scared him.  He probably has a little PTSD from that experience.  If you sit down and carefully explain how everything will be handled differently this time maybe he won't worry so much. 

I do have to ask though, have you discussed with the PS how they will manage you pain after the diep if you had that problem with your bmx from the meds? 

KYLady

Goldie.  I have discussed with my PS and he assures me that they will monitor the situation differently this time. The med dilaudid is what made me so sick.  I do dread the six hour drive home after surgery but we live in a very small town where good medical facilities are non existent.  I am planning on taking a pillow for my tummy but I am sure it will feel more like a 12 hour drive.  

goldie4040

That's good.  I am glad your PS is on top of the situation, and I hope that reassures your son.  That is a very long drive.  Where do you live, and where are you having your surgery? 

kelleyb

Hi ladies,

Just now getting on the computer.  Surgery went well (NOLA) and I'm very pleased I had it done here.  I'm having less pain than I did with my mastectomy.  My biggest gripe is the nausea all the pain meds seem to give me.  I had surgery Wednesday and should get a shower today.  Dr. Sullivan did a bilateral DIEP from tummy, Dr. Stolier did the right side mastectomy.  The facilities here are lovely.  I've finally figured out a way to get in and out of the bed on my own.  They'll let me out of here either tomorrow or Monday.  

liefie

Kelleyb, welcome to the other side! Happy to hear your surgery went so well, and that you're sounding so upbeat. Way to go! I had the same experience with pain. Mine was also way worse with mastectomy than with DIEP.

aemcat313

jmb5,

well, I guess its time to face reality and get on the list -
I'm up for my right UMX/Diep on Jan 23rd, Highland Hospital, Rochester, NY.

all,

I'm getting pretty nervous - anyone else?? I keep wondering how I'll handle this big change in my body - having a huge scar across my abdomen and hips. I could use the upper thighs (would need both), or a single GAP (then be lopsided), but there is that flat tummy aspect of the DIEP that is appealing, eh?. Its funny though, when I was a teen and in my 20's, I wanted so bad to have a flat stomach. But eventually came to like the slight outward curve of my stomach (thanks mom) and decided it was feminine and kind of sexy. Well, at least back when I was a 6. now that I'm a big 12, my stomach is much, um, curvier, and I certainly complain about how it looks. So good riddance, right?

I'm wondering how others who about to go to surgery are adjusting to this? Any thoughts from those who've already gone through it are welcome too.

On a lighter note, saw a great BC t-shirt yesterday for BMX's (esp implants) out there - something like "Yes, they're fake, but the originals were trying to kill me!"  Wonder if there's one out there for flap UMXs "The right one's a replacement, but..."

Rebecca (aemcat)

Zenful

It is entirely normal to feel nervous leading up to such a big surgery.  The famous line among flappers is "You don't have to be brave, you just have to show up."  The skilled doctors will do the rest, and it will be over before you know it.  Everyone is different, but I didn't  find the surgery to be all that painful.  Just uncomfortable and it takes a while to stand up straight.  When I voiced concerns about the scars, my DH said " you are not planning on doing any nude, modeling, are you?"  Good point.  I love his sense of humor.  My scars are too new to tell, but others have had some very good results with their scars fading over time.  I am so thrilled with my new breasts that the scars are very acceptable to me.  And you are right, I have a flat tummy and hip bones that I haven't seen for many years!

Donna2012

Rebecca,

I am right behind you - 1/24 & am VERY nervous!  I thought I'd spend these 2 weeks being busy and getting prepared, but I am really not doing much at all.  I spend lots of time thinking about everything and wondering how my new body will look.  I started to machine wash my mastectomy bras (always hand washed them before), because I figure I only need them another 2 weeks!  Don't care if they last long term now.

Cannot wait for this to be behind me!  Still nervous to stop tamoxifen for 4 weeks and I haven't heard from many that weighed in on this topic.    Anyone??  

Bought a few things to take - cleansing wipes & hard candy so far....

Donna2012

Found out my surgeon scheduled 6 hours in the OR for me & she has done 1400+ dieps.

nihahi

Donna....yes, tamoxifen IS an important weapon to lower the chance of recurrence. BUT.... there is NO WAY that any surgeon would recommend you go off the drug because of a reconstruction procedure....if it wasn't safe for you to do so. That would be completely, medically unethical, and would not be standard practice. I understand the fear, but try to put yourself at ease with this. 

Try to fill the time now with things that you enjoy, or that keep you focused on other things. Nerves are normal, you can do this. {{{X}}}

goldie4040

Donna, do things that keep your mind off the surgery.  Take walks. Go to lunch with friends. Shop for comfy things to wear when you get home.  Set up a nice little recovery area in your house.  I had, and still do have a nice little area where everything is at easy reach.  Phone, laptop. chargers, tv remote, a few little hand sewing projects that I always need to get to, tissues, chap stick, some reading  material, etc.  After you are tired of sleeping for the first week boredom will set in, and you will need little things to keep you occupied.  I have two friends that took up knitting after their surgeries.  They both had just learned, and they made a lot of long scarfs...lol.  I like needle point, and I think I am going to pick myself up a new pattern before my diep.  And, then of course, you will have us to talk to.

Oh yeah, a big help for me was biotene mouth spray to ward of try mouth after surgery.  Ice chips were just not enough.

Hey guys, I have been using the silicone scar strips, and I think I see a difference.  I love that they are reusable.  I did learn one thing today.  Don't exercise in them.  They fall off.  I am just going to use them when I sleep.  I do have on incision that is rubbed by any bra I try, so I keep one on there all the time, but doing yard work today it fell off.  We were in the high 60's today.  I got out there and started to get some leaves up.  My fantasy is to sell this house and find a nice condo with no outdoor maintenance except a sweet little flagstone patio with a fireplace, a shade tree, and pretty lights.  Oh, and a patch of grass for the dogs to do their business first thing in the morning.  I will walk them later. 

jmb5

I noticed on the 2013 DIEP board, there is more info than just stage 1 or stage 2. If anyone wants me to add if they are having a mastectomy or any other info, let me know. It's kinda nice to be able to see that info on the list too. I'm going to add BMX with immediate DIEP reconstruction to mine. Maybe someone who knows what they're doing should be in charge? Lol! If I missed adding anyone to the list, please PM me.

Also wanted to say thanks for the tips on Target lounge pants. I bought a couple drawstring pairs yesterday, and they are so cute and comfy. Also bought a very soft and colorful robe. All things I can wear after recovery too.

kuka21174923

Donna, many surgeons stop the tamoxifen for 30 days prior to surgery. The reason is because when you're on that drug you're at more risk of getting a clot. This has been proven! Being off for that small frame window is not going to make a difference, and the surgeon is just doing it to keep you safer. Hope this helps!

Anonymous

How are you feeling today, Nihahi? Better , I hope.

I saw the PS Friday. Yes, she pulled my drain. She explained to me how she "roughed up" the inside of the fluid pocket so that, hopefully, the two sides can more easily adhere to one another and finally heal. Idk.....as late as last night I could still get air into that pocket (when I bend over) through the unhealed drain hole that would then be pushed out when I stood up  so I put tegaderm over a small gauze in hopes of keeping the air out until the drain hole closes. Ugh.

But they gave me a tube of scar gel (called Amology) and a roll of paper tape. The scar gel goes on, paper tape goes over it and leave it for 3 days. Remove and start over. 

I did not heal well this time across the top of the football....again. I asked if she thinks it's because of the radiated tissue being connected to the good , new tissue. She said maybe. She will try to take some more of the radiated tissue out next time, and leave more belly tissue, but she has to be careful so that she doesn't get the scar too high.

Hello, Kuka! So happy to see you around the board!

nihahi

kelley...hope you got "sprung" from hospital. Also, hoping all is well with maggie....

thinking of this weeks ladies....saddleup and browniefranks.....safe surgeries and gentle healing to you.

hey, bailey.....gosh, wish that pocket would behave for you and close up for good. Is there anyway you can keep some compression on that area?? Are you also meaning you have an unhealed incision or that it hasn't healed "in a clean/even look" hence the scar treatment? I hope time brings better healing for you. Sending you positive vibes and hugs. 

sbe....what is your take on the hyperbaric tx as far as better healing for your uncooperative rad skin????

I'm feeling great now, no muscle pain at all.....but, I think I have a touch of sbe's constipationator syndrome....sooo not the norm for me, I'm usually the opposite end of the scenario. But I'm going to spend some time on the treadmill today, so hopefully I'll manage to get more than one area "moving" .

goldie4040

jmb, you are doing a wonderful job with the thread.  It is nice to have as much info as possible about each surgery, so the fact that you noticed that and are taking it upon yourself to add that info is great!!!!!  We all thank you and applaud you for efforts.  You are doing a great job!!!!!