DIEP 2014

AnnBR

tp4ever, my PS found the node as he was removing a small portion of my rib to get to the blood vessels. It's part of the DIEP reconstruction process and would not have been found if I had another type of reconstruction. I am extremely grateful that he noticed in his words...a funny looking node...and that I had decided on the DIEP.

Ann

OneTexasDay

My diep is scheduled for 6/12 and I am getting nervous. There are so many experiences on here of folks whose journey's fall into that "rarely" category. I am thinking I may not really be prepared for reality. Hoping to go back to work at least half days after about 5 weeks.  Am I just unrealistic or worse.... crazy?!

Also wanted to poll those who have already had diep...

How many nights in hospital?

What should I pack for hospital?  What was your hospital stay like?  Did you sleep most of the time or did you need stuff to help pass the time?

Any hints for things that helped once home?

I feel totally unprepared. 

The1toC

Hi all. What a great read with so much good news of great stage 2s, good healing progress of stage 1s, discoveries leading to additional but welcome treatments, preparing for upcoming DIEP...wow....great energy! 

Today was my first day driving since surgery! Felt liberating.

For those on Tamoxifen and stopped it temporarily for their DIEP (b/c increase risk of clots) how soon after did you restart? Was it a similar experience to when first starting the tamoxifen? I am not sure of the value of restarting and then stopping (or at least I assume to stop) for stage 2 in a few months. Any comments/experience.

Thanks.

And thanks for all the inspiration!

The1toC

OneTexas. We have been there in that scared spot where you are. Take a deep breath. You will be fine and do well. You have chosen this surgery so ou know it is right for you. Get connected with that KNOWING within you. That being said, nerves are normal.

For the hospital I was 5 days. In a chair 2 d post op and short walks by 3rd but mostly sleeping. I found a spin toothbrush, face wipes, a hand fan, eye drops, slip on mules most helpful. At home my beloved recliner which I slept in for 3weeks and a shower stool most helpful. I was able to borrow one from our local StVinnies medical closet.

Prior to surgery I considered what I would not be able to do once home. Got the yard raked, ground was still frozen (even today there are still lots of mini ice bergs floating on Lake Superior while bikini clad girls sunbathe on the beach!) So couldnt get the garden turned. One day I gasped when I realized I would not be able to paint those 3rooms as I had planned for the summer and spent the next 5 days painting like a madwoman. Was a great distraction!

Going back to work...depends what your work is. I am 3weeks 1day today and go back on Monday. I will ease in and am fortunate to set my own pace at non strenuous mostly sitting job.

Hope that helps a bit.

Teacher64

OneTexasDay, I'm just north of you in Melissa. I had DIEP on March 18 and was in hospital 4 nights. I packed toothbrush and paste and lip balm, which was my favorite thing, robe and slippers. I had a journal, book, phone, and iPad for communication. I didn't read much but was glad to be able to communicate. Intensive care for night, day and part of next day while nurses used Doppler hourly to check blood flow. I was up day 2 sitting and walking. Pain was controlled. Although it has been 10 weeks, I have already forgotten much of those days unless I look in my journal. I can't speak for your work schedule because I'm retired. 

lemon68

Trinity, Yes there is a photo forum. You need to PM nowheregirl to get permission and instructions to go into it. I did it so long ago if someone else reads this and I have the name wrong please correct me.

I had nothing on my breast when I came home from hospital. My 'targets' as Teacher calls them were on the sides of my breasts. 1 week later I had another surgery to remove them and was put in a surgical bra. Its really just a cotton bra with about 10 hooks in the front. I have bought 2 more at Walmart black and purple for $9.99. I am to wear it until my PS tells me to stop. They really aren't bad, in the evening they get tight as the swelling is bad and horrible by evening. I also have a huge belly binder that is Velcro. I wear it all day and take it off at night. Even when its off I feel like it is on. My tummy is rock hard and soooo tight. I really do feel better with the compression on than off, especially the tummy I feel like it is giving some support.

Onetexasday- I was in the hospital for 5 days, 4 nights. I walked on day 2 to the restroom as I asked for catheter to be removed. On day 4 I walked in the hallways. Walking wasn't bad it was getting out of the bed to do it. I slept on and off and had the tv on the whole time but I don't think I was watching it. I didn't feel like playing on my phone or tablet probably to groggy to do so. I work at home and thought I would be off 2 weeks, I tried to work last week and couldn't focus on the screen or think clearly. Yesterday I worked 4 hours and today the same It felt good but I didn't do it straight as sitting in my chair was not comfy for long periods. I think 5 weeks sounds reasonable depending on what type of job you have.

I see my PS tomorrow morning, once a week since surgery, I love him! After tomorrow its 4 weeks till I see him again. I am also scabbing and some are coming off. I just wish the swelling was better. Keeping a close eye on nipples, I feel sorry for them..lol I think I am past the time of losing them I will confirm this tomorrow.

JMB, sounds like things went great today. I look forward to your report on how things look. Did you go to main campus or someplace closer? I have been seeing my PS at Hillcrest in Mayfield.

Bella, stage 2 sounds like it was great for you too. Yahoo.. please let us know how things look.

Naiviv- I hope they go over all options so you can make the decision that is best for you. I would think with so many flap options available you wouldn't need an implant. I would also think they should be able with a new flap to match things up. If you are happy with your good side I would hate to see you have to change it to get them to match, that doesn't seem fair to me. You have been though a lot already, I just want to make sure you get what YOU want. Let us know how things go.

AnnBR

OneTexasDay, you are not crazy, you are normal! There are many unknowns, such as, What will I look like? How long will my surgery be? Will I be in a lot of pain?, etc. What helped me was to be as prepared  as possible, so I am glad you are seeking answers from those of us who've gone through this surgery.

I spent five days in the hospital, and the staff was awesome. I dozed off and on the first day but was mostly awake and relatively pain free. There is a lot of activity the first few days as the staff checks your flaps hourly and your vitals on a regular basis. The day after surgery I was walking around the nurses station and was able to spend a lot of time sitting in a chair. I used everything I packed for my hospital stay which was some reading material, a small notebook, a cell phone, ipad, face wipes, brush, lotion, toothbrush and lip gloss. I brought along granny pants but I admit going commando was much more comfortable while in the hospital! I wore yoga pants, an oversized sleeveless tee and a button down shirt to and from the hospital. 

For home, I set up a small table next to my bed that held my supplies. I prepared my bed with lots of pillows as we do not have a recliner and I've been very comfortable. My DH has moved to the guest room while I recover and I admit I've never slept so well. I also prepared several casseroles for the freezer, but I've had many dear friends and family members drop off meals.

I went back to work yesterday which was four weeks after surgery. I begin radiation treatments next Monday as a positive node was found during surgery. I felt I needed to get back and catch up on a few things even though it's only for three days. My treatments will be at the Mayo Clinic which is 3.5 hours from home, so I will be staying at Hope Lodge where cancer patients may stay for free while undergoing treatments.

Wishing you the best of luck!

Ann

goldie4040

Lemon, what a great idea to have the "targets" on the side and then closed up when they weren't needed anymore.  What an awesome technique.  Most surgeons put them in the middle and then they use them to makes nipples, but it doesn't always look that great.  I love you PS's technique.  I remember writing about extra skin on the side, but I didn't know what you meant till now.

Ann, you are a trooper!!!!  You are one of the miracle girls who are up and around right away.  Awesome!!!! 

Naiviv, since you have a blood vessel issue in your chest I think the only way you could have a flap surgery on the failed side is to do the LAT flap with the small implant.  I would like you to go to the Mayo Clinic website, I believe, and look up the way they do it.  I am going to find it, and post it here for you.  They have a way of doing it where they use the skin and fat, but spare the LAT muscle. Only certain docs know how to do the procedure.  You have time to figure it all out.  Right now rest, and heal.

Welcome OneDayTexas.  I think all the ladies said everything that you need to know.  Great info. Great girls.  Stick around. We will help you through this.

optimi

Ha, how interesting that most of you were out and about so much sooner after surgery. I have already lost all my stamina during chemo. Just walking up a flight of stair makes me breathe hard and my legs start hurting. After surgery and the bed rest I will probably have to re-learn how to walk But the worst part is they won't even let me out of bed to go to the restroom. They will have nurses come in with bed-pans. That's the part I am least excited about. 

Did you ladies just wear the hospital gowns during your hospital stay or were you able to wear your own clothes? I am just wondering how many clothes to pack.

Goldie, that's a good point.I need to check with them whether they will have me use the spirometer more frequently

Bella and jmb, so great to hear that you are doing well after stage 2 and excited with the outcome. Woohoo!

Naiviv, I am keeping in my prayers. I hope they can match the failed side with the good one!

Lemon, what do you mean by 'targets'?

lahela

Trinity, the bra question is one for your PS because they all really do things differently. I was told to wear nothing for about 6 weeks, from memory, and then only a supporting and non-compressing sports bra (I wore a Bali, like many other women here). 9 months out and I am finally in an underwire!

Kat, I sympathise with you - I tried all the AIs but the joint pain was unbearable. On Aromasin, my jaw hurt so bad I couldn't eat! You can always go back to Tamoxifen if need be - quality of life is so important. {gentle hugs}

Ladies who are about to have their DIEP, we have a saying around here - you don't have to be brave, you just have to show up. Know that you have our support and love as you do this.

xxx

GwennyMD

Optimi - I had last chemo treatment exactly 2 months before DIEP.  Like you I was totally drained but was able to eat and felt better by the time I had the surgery.  I was in the hospital for 3 days after the surgery and only wore hospital gowns.  I see no reason to wear anything else since the nurses and doctors are checking the blood flow in the breasts and the incisions every few hours.  I did take a robe which became handy when Physical therapist forced me to walk down the hall on the 2nd day after surgery and walk down the steps on the 3rd day.  I did not want to be accused of flashing. lol 

Goldie - after the 4th week I complained to PS that my back was hurting because I was still bent over.   He told me to just stand up.  He thinks he is a comedienne.  I had been pulled very tight.  I started leaning back against the wall for a few minutes every day and then pushing off to try to walk straight.  Hang in there.  Eventually you will be upright.

Naiviv - You are in my prayers.

Wishing a speeding recovery to all who are recuperating this week. 

jmb5

lemon, I had my stage 2 on main campus. My PS also sees patients at the Beechwood facility, but they couldn't get me in there until mid-June. My surgery started at 7:30, finished at 10:30 and I was on my way home by 1:00. I felt really good when I woke up so they let me leave. My body is sore today in all the liposuction areas. My breasts don't hurt at all. They are a lot bigger, but I'm thinking that's from swelling. 

JerseyMomOf3

Optimi, one of the best things in the hospital were these shampoo caps. The patient techs washed my hair with them and they were amazingly effective! They have water and some type of shampoo - mine were warmed up too - just placed on my head, they would massage it all over and take it off and voila, wet clean hair that smelled fresh!  Ask for this if they don't offer it. I brought a headband which was helpful. I second the eye drops. I wore hospital gowns e whole time and brought a light robe for walking the halls. That is all you need really. I never even wore my slippers because they gave me traction socks that were better. Just remember while in the hospital "this too shall pass" and you will be out before you know it. Good luck to you!!

Teacher64

Shampoo cap? That sounds divine. I would have loved that. 

optimi

Thank you all for the wonderful suggestions and pointers, ladies! I need to get a robe I am noticing.

Gwenny, I haven't lost my appetite at all. Not during chemo and not after. In fact I think I have a lot more appetite now then before all this

My PS mentioned that they don't want me to wear any bras until the appointment after I am out of hospital. Apparently, that's when they will provide me with the binder and the bra. I am glad to have one less thing to worry about.

JerseyMom, I don't have any hair yet. But the shampoo caps sound great. I will ask if they provide it to their bald patients too. If nothing else it would be a nice smelling head massage.

Trinity0723

Amen on the shampoo cap. Definitely looking into that. 

Lemon if you could explain the target thing again or point to the page that would be great.

I'm confused about the excess skin beside my boobs under my arms. What can I have done about them?

Y'all were talking about medicines for joint pain. I only take lyrica (and norco). Suggestions or thoughts. 

Thanks.  

Dyvgrl

when I was in the hospital they used shampoo caps to wash my hair. The nurse would wash it for me. Felt sooo good to have clean hair. They had them tho and offered so maybe just ask if they have them. I didn't take a robe, they just put a hospital gown on the other way to cover my bum. I packed a lot of stuff and only used my Chapstick.

Teacher64

Trinity, I have excess skin under my arms that will be taken care of in Stage 2.

I've had redness(bulls eyes) on crop circles. PS wanted pictures today. Nothing like taking selfies of boobs to send to dr!! May need something to reduce redness or may not. He will let me know. 

Now I get to workout. I was puffy yesterday but better today so I know I will be puffy tomorrow. Hopefully, soon that routine will go away.

lemon68

I only called them targets as Teacher had called them that. Normally you will have circles of belly skin where the nipples were, since I kept my nipples I had the circles or for me ovals on the sides of my breasts. He banked the belly skin there in case it was needed if a nipple died. A week after surgery I had a surgery to remove that skin and close them up. I had no idea and I have never seen a picture on the web of this procedure. So, I have incisions from nipple going to side of breasts. All the tissue was removed though that so mine look like mine or I hope they will. I will post pics soon.

Yes, Goldie pretty cool and a surprise to me. How are you doing? Are you walking any taller today? I remember your pic you posted a couple months ago and you were already rocking  great bod  so I know you must be pulled so tight. Hope its getting better for you.

I saw PS today. My swelling on sides is bad he is going to wait 3 weeks and see if it goes down if not he is going to try to drain it in case it is a fluid build up. He immediately said my tummy incision needs to be contoured in Stage 2. My DH calls it my scary clown smile. Overall he said I am doing good and healing on the outside well. Oh, I did not have any muscle taken as I had thought. He repaired the bottom ab on both sides with mesh to strengthen it due to damage from hysterectomy. He said I am DIEP on both sides. I was happy to hear that.

laurie2025

jmb - feel better, and get a lot of rest.  You're doing great!

rose111

Hi Ladies,

Thanks for all the tips for the hospital stay.  I am scheduled for my surgery in 21 days and am also starting  to panic a little.   I have been repeating our mantra...... I just have to show up. (With  Chapstick, a button down shirt and  yoga pants).  I am having  r mx with immediate DIEP.   I am wondering  how the surgery and recovery differ from those who have had  delayed (?) DIEP.  Is this the correct term?   

Wishing a speedy recovery for  the May surgeries and good luck to all of us  going in June.

BellaMomma

Thanks Goldie! Pretty beat up but happy with the results.

Ann, Yes I will be in Rochester on Monday.  Want to meet and grab a cup of tea or coffee?

k79miller

Optimi...I wore my own pj's.  If you decide to do that just be sure they have a button up front.  Find out if you're going to be in binders.  If you are then lotions is a must.  I was in the hospital for 5 days.  I didn't initially take lotion but had my Mom bring me some because I was itching horribly.  I ended up peeling from being so bound up.

Ann... I think your PS finding the node is just another sign that everything happens for a reason.

It sounds like everyone is doing pretty good.  So glad to hear.  I'm looking forward to my 2nd stage in July.  I won't be as anxious with this surgery as I was with stage 1 but I am excited to see the new me.  Initially after stage 1 my breasts looked fantastic but they've my radiated side has taken on it's own life.  My PS made it bigger but now that I'm 10 wks out it's quite a bit smaller & definitely not shaped as well as the unradiated side.

 

goldie4040

A quick drive by posting.  Hope everybody is doing well today.  I am still not standing straight.  LOL.  It is beyond miserable.  Hope PS has some words of wisdom when I see him next week.

Lemon, I remember that pic.  It was of that great belt that keeps your pants up. Those are NYDJ and they have tummy control.  Love those jeans.   Yes, my tummy wasn't that big, but they said it was enough.  I am starting to wonder. Sorry about your swelling.  Do they think it's seroma?  I don't know how they would drain it if it's just swollen tissue that has been traumatized. It would seem that would just be a waiting game. I still have some swelling too.  Hang in there.  BTW...love your new profile pic.  You are adorable.

Those shampoo caps sound awesome.  I am going to look them up. 

Hang in there guys.  See you tomorrow.

koalabear

hi all ,

I had stage 1 on May 20th, NS PBM with DIEP reconstruction. The boobies look great, virtually no bruising but some swelling on the sides - feels like hard balls under my armpits but soft to the touch.  Great shape and projection. 

Belly is what's really bothering me. Scars are healing nicely but the swelling is terrible. I'm much bigger than before the surgery. Every time I eat, I feel bloated. My bladder can't hold anything either. I'm seeing my PS again Monday morning and will ask about it again. 

I'm in a bra provided by PS and also a binder. He says to help prevent fluid buildup since he removed all four of my drains day 7. My drain output was low. 

I'm walking mostly upright but not totally. I'm walking about a quarter mile at a time about 4 times a day.  

Riding in a car is really uncomfortable. I'm flying back home on Tuesday and hope I'll make it! I miss being in my own home!

The1toC

Koalabear sounds like you are doing really well! Hope your flight home goes quickly and smoothly.

Teacher you and koalabear talking about working out inspire me to take action. The time is now and I am so motivated to get my body in its best shape over the months before stage 2. Thanks.

Wonderful women I hope everyone has a glorious weekend!

pollyanna5

HI everyone, my surgery is June 10!  Just over a week away, and getting nervous and excited to be done , and move onto the next stage of life.  I had DCIS found in a breast reduction at the end of March.  So, heading in for my second breast surgery in 2 1/2 months.  I have DCIS in the right breast, but grade 2-3, with family history, I'm going to do a BMX and be done with surgery.

It's the prep work right now that is stressing me out.  I'm a single mom of 5, so arranging everything for the week w'e're away (surgery is 2 hours away) is mind boggling right now.  I have a sitter in for the week, their dad will take them for his weekend (when we come home), and then my mom will take them for a bit when we're home, then sitters again.  

I'm thinking I've been underestimating how rough this surgery and recovery will be. 

iowagirl1

Bella,

I am in Rochester on Monday also.  Small world.

AnnBR

 Bellamomma, I would love to meet up with you. Would the afternoon work? I am coming up on Monday morning for my first treatment at 1:45 and then I am checking in at the Brentwood Inn & Suites. Are you staying at Kahler Inn & Suites? I could meet you in the lobby around 3:30. Caribou coffee is right there or the Crossings Bistro. I am open to other suggestions and a different time too.

AnnBR

Iowa, I must have been posting at the same time as you. Are you able to meet on Monday? I can come up earlier if that works.