DIEP 2013

Hey ladies I am 8 days post diep. I love reading your comments and stories. I'll share a little more of mine in hopes it will be helpful to someone. I was diagnosed at age 45 with stage IIIB idc (strongly suspicious for inflammatory breast cancer at the time but turned out not to be). I had two tumors in my breast, the largest 4 x 9 cm, and one in the lymph nodes. I was a regular mammogrammer and self examiner most months. I was in my busy time of year at work and my sister was getting married so I may have missed a self exam. I had recently lost 40 lbs. I didn't find a lump....I found hardness and pain and "heat" in the side of my breast. The docs believe maybe it was partly hidden from self exam due to the adipose tissue I had lost. Regardless, it wasn't on the mammogram a year before and suddenly it was 9 cm!



I spent the 72 hours between diagnosis and 1st onco appointment researching and decided on DIEP reconstruction. This was in June 2011.



Onco decided I needed chemotherapy first (neo-adjuvant) and being HER2 positive meant a year of Herceptin.



Had port put in in June but it had to be pulled in October because the scar kept opening (poor healing due to Avastin treatment).



I had six rounds of chemo and then complete mastectomy in November of 2011. I had no tissue expander...radiation oncologist didn't want it in the way of rads treatment. I developed a huge truncal seroma and truncal lymphedema during rads.



Had a preventative hysterectomy and oopherectomy in March 2012.



Truncal seroma had massive infection requiring 4 days in hospital May 2012. Finished Herceptin in June 2012.



Gained 40 lbs during treatment due to instant menopause, failed thyroid gland, tamoxifen and then Femara. Plastic surgeons didn't refuse to do DIEP but really wanted me to drop the 40 lbs for best results of DIEP. And wanted me to wait at least 8 months post rads.



So began a year of work to lose weight and loosen adhered mastectomy scar from chest wall.



And with lots of help I was able to do both! And had my DIEP 8 days ago



My 6 hour surgery ended up being 10. I was in hot room (78°) with hot blanket (bear hugger) for 48 hours after. Doppler checks for flap blood flow every hour for 48 hrs. Ice chip diet for close to 48 hrs after in case I needed to go back in to OR.....Liquid diet for another 24. I wasn't very interested in eating the first 48 anyway.



Biggest struggle for me post surgical is always pain meds. My body thinks most narcotics and antinausea meds are pure poison. This time we figured out that a dose of compazine followed one hour by a dose of dilaudid worked pretty well. I did compazine and nucynta at home the first couple of days and then quit for just Tylenol and Motrin. I would rather tolerate a fair amount of pain than be strung out on narcotics. They are just not my friends.



So, I am doing all right. For me this has been the most difficult surgery of the last two years in terms of recovery....even though I was probably in the best physical shape going in.



I was back to work 2 weeks after mx, 3 weeks after hx. I cannot imagine going back right now!



I had a lift done on my right breast and it is fine. DIEP belly is sore and swelly but tolerable. But my DIEP breast is insanely large....swollen to at least 4 times what it should be and very uncomfortable. Still has a drain and is filling 2-3 times a day. Can't wait for Tuesday's follow up.



So those are my basic facts.



Is anybody else having crazy swelling?



Thanks girls!



Bailey

mammalou.....Sounds like the wedding is important to you, so I bet you rally yourself and get there just fine. You likely won't be leading the conga line at the reception, but perhaps you can find a comfortable spot to sit and enjoy the family celebration. Bet you'll be pretty tired by the end of the day, but maybe there's a way you could slip away if needed for a short rest???? I'm sure your sister and the rest of the family would be happy to have you there, no matter how limited the time or participation is. Hope you find something to wear that you are comfortable in, and that helps you feel pretty too, cause you're gonna be rockin a whole new you!

Starving is so not what you should be doing at this time (or anytime!). Stay active, eat healthy food and smart portion sizes. You need to be "well" going into this surgery.

Bailey....I had total, significant body swelling...to the level that my husband had to really, really loosen the laces on my runners, so I could get my feet into my shoes to go home. Every part of me was swollen, but it seemed to rapidly decrease once I got home. I had a lift done to the opposite breast too. Flap breast was way more swollen than the lift side, but again, I could see changes for the better almost daily, once I got home. Narcotics and nausea.....same with me. I bet things progress rapidly for you now, and once that pesky drain gets pulled....you'll be amazed how much better everything seems.

We all have those "creme bruleé days.....glad to hear your's is short lived!

Okay, who had delayed DiEP and what were your experiences.  I have talked to the immediate reconstruction gals, but I really would like to hear some delayed" experiences.

I guess I have been a real bitch lately, and my sister in law gently put me in my place.  I need to be a little bit more understanding when people are trying to be helpful, but are actually annoying me.  I don't know if it's the xanax I take every once in a while, or my anger of my first reconstruction failing, but I have been a bitch lately.  She made me understand that most people don't really understand what I am going through, and thing they are saying the right thing. 

Goldie...my original mx was over 20 years ago. Then 2 failed implants...first one ruptured, second one developed garde 4 capsular contracture. I'm now 7 weeks post flap....couldn't be happier.

Your feelings are understandable, glad to hear you have a sister-in-law who seems to care and wants to help.

Thanks, Ninahi....my fear is not having the skin to put the tummy fat in.  The PS will also use my tummy skin and when i see the pics of those reconstructions the skin color looks different, etc. 

Yes, I am lucky. I have great support from my family, and DH.  Most of my friends have also be great sources of support, but nobody gets like you guys on here. So glad I found this place.

Goldie4040:

There is a forum on here called " has anyone found the cure for stupid?" Or something along those lines under Humor. Lots of comments about different ways to tell people to STFU. It will crack you up and put things in perspective!

Bleu, I hope I am as lucky as you.  I don't care a whole lot if I have a patch in the middle that might be a different color. I just don't want it so high up that it shows when I am wearing a bra.  Ugh.  I should be glad I am getting breast at all, do I ask for too much....lol

I just cracked myself up.  I am on Facebook a lot, and for those of you that are also Facebooker's, you know about the "like" button.  I can't tell you how many times I read a  post on here, and want to hit the "like" button. 

Ssla had just posted that her insurance approval came through, and I went immediately for that "like" button.  Can we get one?....lol

Bailey, I am 7 days post op DIEP, delayed due to failed implant reconstruction. This has definitely been my most difficult recovery.  I was off work 4 wks with BMX TE placement, 5 wks post exchange due to complications, and expect 4 wks with this.  We'll see.  The post exchange was hell, and I'm sure at the time I thought it was the worst, now I'm not su sure.

Goldie: I have been a bitch lately, too.  Sometimes justified, mostly I'm just tired of being nice when I'm the one going through this. I blew up at the nursing staff at the hospital, today I blew up at the appointment call center staff (that got me no-where).  Anway, my DIEP was delayed.  I had BM with TE implants in 11/2011.  I had large fills until exchange 7/23/2012. 9 days post op, at my first follow up, I had raging infection, was hospitalized for 2 wks, ended up having one of the implants removed.  We planned replacement implant vs DIEP for December, 2012.  Four days before my scheduling pre-op appt I had emergency appendectomy and had to put it off again. So, I had one implant and one prosthesis from August 2012 to last week.   I have to say I am in the best physical shape of my life going into the DIEP. I eat better, exercise more, enjoy life more, etc... My breasts are freshly swollen, hot and tender.  I'm trying to not imagine infection, again, but my mind keeps going there. Long story, but........

I am bitchy, irritable, etc however.  It is true.  I have lost so much patience for the stupidness around me.

Just so I don't scare anyone I am a sweller....the fact that I am 5 times normal size is not unexpected for me. After my mx the doc's said I spontaneously grew a new boob at the mx sight from my ridiculous swelling. Not everybody does this.

I am a sweller, too. Not quite that much.

PS said he was able to give me a little more volume than he had expected.  I can't even put my arms down by my side, it's like my honey dew melons are planted firmly in my armpits! Hubby didn't say anything until I did today.  I mentioned how I couldnt put my arms down and he giggled and said "I didn't want to say anything, I figured its just swelling, but HOLY CRAP - PORN BOOBS!" I do have to say they stick out past my rib cage. I hope that's not permanent.

I am retaining water horribly since this surgery.  I don't even remember the last time I retained water.  My feet jiggle like little water balloons, and hurt like they are going to explode.

Medically supervised weightloss is great! I get harassed about how little I eat, etc.. but I had lost 137 lbs on medically supervised weightloss, just before I was diagnosed.  I rarely count calories anymore.  I am solidly in portion control and just keep my log.  I plan in so far as I pack my food to take with me, but I don't count calories ahead of time.  I stock my shelves in portions, in the refrigerator and the cupboard.  Then I toss the appropriate number of servings for the day into my bag.  Viola! If I creep up, which I do occassionally, I revisit what combinations I am grabbing from my portions and adjust.

My weekness is exercise.  With all my surgeries I  make excuses.  Sometimes valid, mostly not.

Janet - welcome to our little group.  Please don't let our copmlications or negative experiences discourage you. If anything, let it help you be prepared.

For instance, I heard from everyone that the heat in the ICU and post op hospital room was nearly unbearable.  I just mentally prepared myself for horrible heat, to last a week, I could do that.  I heard that I would have to lay still for 72 hrs.  I mentally prepared myself for this, sought out body movement exercises I could do while laying in bed, and I could do that.

I had my moments where I lost it with nursing staff.  I could have handled it better.  But, I move forward with a plan on how to handle such a situation if it arises again, without losing my cool.  (I like your tagline "Just because you're having a meltdown doesn't mena you're not coping."

I am now 8 days post op and, while still raw physically and emotionally, not there yet, I can still say that I'm sure it will all have been worth it in the end.

Morning!  For those that are retaining water following DIEP, please call your PS.  By the 8th day after surgery, I couldn't see my ankles.  Feet barely fit in shoes.  When Dr. T looked at my feet at my Post Op, he ordered lasix.  I began taking it and within 3 days was back to normal.  Just a thought.

Janet - you are exactly where I was about 10 days before mine and now I am 10 days out! You can do this.



Vacuuming the dog!!!! Hysterical...I laughed so hard. I get it. I remember blogging about cleaning under my refrigerator pre-hysterectomy and getting a bunch of crap from my friends. But knowing it is clean under my refrigerator somehow makes me feel better when I am lying in bed helpless. Yes it's completely silly and illogical but it is a control thing. I was talking to a good friend who was trying to talk me down from my pre-DIEP cleaning frenzy and I said, "If I take care of everything beforehand then nothing will go wrong." Also silly and illogical.....but control!!! If I have a large dose of hypercontrol presurgery it seems to last me through the period when I have no control.



I also live with three men (DH, 17 and 14 year old sons) and two dogs so it gets dirty here! My little mom came yesterday and vacuumed for me cos she knows the dog hair makes me nuts.



As far as dealing with the heat. ...I asked my ps' s to keep me as sedated as possible the first 48 so I wouldn't know it and they agreed and did. I also brought my chillow (as seen on tv) to keep my head cool which helped. I take Celexa for hot flashes since chemopause and that helped too. I know I snuck a couple of ice chips and let them melt on my wrists a couple of times (oops). It's doable.



I love that you are having a party for yourself with your support group. I did the same when I finished my year of Herceptin and the weekend before my DIEP. Both were really wonderful parties. You will enjoy it I am sure.



As far as my hospital experience I had a very, very good experience (and I am clearly a control freak). Nurses were great and responsive....there was one that I didn't care for from a personality standpoint but she was also the one that knocked herself out to figure out what my correct pain/nausea control concoction was.....So I ended up loving her a lot.



I went home late on the 5th day and was ready.



My most useful things at home are my shower chair, my wedge pillow for bed and my long handled reacher (oh.....and the DH and children, of course).



Hang in there Janet!