DIEP 2013

Wow, so many stories! I'm thinking of Robyn, especially. I'll soon be in her shoes, er.... slippers.



Liefie, I hear ya. I've had these TE's for 16 months and can't imagine wanting anything tight around my ribs ever again.



My preop appt. today was great. I love my PS's PA. She answered all my questions and concerns, took lots of notes and I feel I'll have a good advocate for my comfort and care in the OR. With lymphedema, nausea from pain meds, small airway, chronic neck pain, there was a lot to discuss. I feel reassured that there will be four people working on me, up and below, not counting nurses and anesthesiologist. They try for a low incision so hoping I don't get fangs!



Then we moved on to the CT appt. They were running late. Then they had to get the CT supervisor to put my IV in because I have to have it in my foot (thanks, lymphedema). He spent a long time searching for a vein, inserted the needle and I practically jumped off the chair in pain. I've had them before but this was the worst. My vein started spasming and I finally said, through tears, "try another vein!" He found a better one by my ankle on the opposite foot. Now I am bruised and sore and will be having trouble wearing shoes or flip flops (or zoris or THONGS!) but, wait, it gets better. I had the CT and lay there afterward for a really long time. The tech-whatever comes to me with a sad face. "It was too quick," she says. When you have a foot IV apparently it can throw off the CT because the injectable dye travels differently from your foot. They didn't get the CT of my belly!! She mentioned something about so many lymph nodes being missing, too. Evidently the radiologist is asking my PS if he can do a Doppler ultrasound instead and he is quite excited about it. At least there is no IV involved. Hello, full bladder. I have lots of fun things planned between now and the 18th and I don't want to give any of them up for this ultrasound! I have been tearing up all afternoon. I feel traumatized.

Oh my goodness Jeannie, that sounds like torture! Doppler ultrasound sounds way better - hopefully it will not impact too much on your planned activities - good luck to you!

I have spent the majority of my evening reading DIEP 2012 thread.  Very interesting.  They started out talking about things we never touched on here, like being wrapped during delayed DIEP's for lymphedema, and for the first time ever on this thread I read about a women who had 3 failed flap surgeries.  Kind of scared me, but she had clotting problems.  Don't now why they kept trying.  Also, the talk a lot about blood thinners, and aspirin therapy after surgery.  I will probably finish up the thread tomorrow, but what is interesting is all of those women have moved on.  Didn't recognize any of the names.  It's sad to think we will all go through this together, and then probably lose touch when we get on with our lives away from cancer, and surgery.  I know that is a good thing, but it also made me sad.

I guess we are here to go through it, gather knowledge, support each other, and then pay it forward to the next gals that pass through. 

Bailey, there was an interesting story I read about a woman with the same kind, and type of lymphedema you have.  She spoke of how her NOLA doc informed her that when they transfer the fat from your tummy to your chest, lymph nodes come with it, and a lot of times it helps a lot with the lymphedema.  This woman ended up seeing a big difference.  I think you have a wait and see good thing that might happen to you!

Jeannie - my CT scan did not show any useable veins.  The scan was the day before surgery, so I didn't know anything about it until the morning of.  My surgeon pulled out a small handheld portable ultrasound device, gelled up my abdomen and began searching.  It took her about 10 seconds to find the first good vein, then a second, a third and a fourth.  She told me that sometimes the machine gets the reading on the arterial flow instead of the venous flow and nothing shows up.

Re the Lympahdema - there is a special technique that only a few docs are trained to do in which lymphnodes are transferred from one part of the body to another and intentionally reattached.  My doc is one.  She is a lymphadema specialist.   She has had amazing successes.  

Goldie - the biggest challenge sometimes is just too much information from reading the boards.  BDavis once said that the women who have no issues are on the boards for a year or so and then go back to their lives.  The ones with challenges tend to hang around, as they rightly should.  Flap failures really are rare when preformed by a well trained doc who does the procedure frequently (at least 1x/week).  My doc is a compression gal.  She wants us in really good compression for quite a while.  She also gives us heparin in the hospital and then we switch to lovenox for 7 days when we get home.  Both are blood thinners.  Yes, i have learned to self-inject.  Thankfully it is a very tiny needle.  My 1st Stage was in November.  When I think about that time now, it is pretty hazy.  Sure there was pain.  A very tight tummy.  The bent over walk.  The drains.  But then there was the day about 6 weeks after the surgery when I suddenly realized that the iron bra was gone, really gone.  That made it all worthwhile.

Goldie, since I started this recon journey I have had many surgeries and actually had a flap failure due to a hematoma that was not able to save the flap after considerable trying by my Drs. I am now going in for my stage 2b next Thursday.



The reason I say this is to answer your question, concern, about feeling good again. After the first several ops (all within a 6 week period) I thought I'd just go without one breast, be a one breasted/flap and one flat/unreconstructed breast lady! I HATED thinking of any more surgery. Got really mad at DH when he asked the PS when I could try something else.



The tincture of time and the recuperation of my body made me feel better than I felt before recon. I didn't want to go through it again though until I somehow knew that if I felt this good THEN, that I could do yet another new method to get another chance at a flap. I made the appointments and I won't say I didn't fret over it, I did, but somehow time swept me away on my path of fixing me and it was done!!!! Successfully - after giving my body the time it needed to be healthier. Now, 2 operations later - I know my body. I know that I go through some discomfort up until 5-8 weeks but after that it just gets better and better and I feel so much better than I have for many years.



My particular journey had me losing weight, dropping several sizes, and having DH tell me he thought I was beautiful (now we were at a wedding and he WAS drinking both his and my champagne - however I didn't feel beautiful before). But most importantly to this message - I didn't give up on my plan to have TWO gloobs/foobs/flaps and not implants. I knew if I did it once, I could do it again (with lots of prayers), and each time when I do feel good I'm feeling better than before!



I also had the bathing suit try in, and I liked how I look in it!!! Amazing! And the gloobs are MINE!! If I gain weight, they gain weight, if I lose weight, well guess what - they lose too - soft, supple and ME!!!



I've never had the iron bra - don't think is want it for long at all!



There are so many advantages to the DIEP. In Drs who do all sorts of free flaps (as does my PS) the DIEP is the first, SGAP if you are not a candidate for DIEP , etc.



My PS also has you do rads first then a waiting period.



Hope this emparts the message I was going for - that your first decision to do the DIEP is totally a doable and good thing to continue on to do despite any time commitment to do it.



Big hugs



Catie

lhw- awesome links!! I am going to print them out and use them, my PS told me I could do some mild stretches but didn't give specifics like the book shows. I am going to bring a copy to my next appt- that would be a great thing to hand out to patients!

Lhw - Fabulous! Thank you so much for posting those exercises - I just read through them and I'm going to start stretching. I'm almost three weeks post -op and don't have a plan.



I find it strange that I got kicked out of the hospital with a small (too small!) container of Percocet, and no follow up except for my one-month post-op appointment. I spent months preparing for this surgery, and the only post surgery info I got was 'Don't lift anything over 10 lbs'



I had more physio and follow up after my lumpectomy! So this info is much appreciated.



Janet

Sweetpickle -

Why is this? Someone earlier mentioned that there's no standardized after care for DIEP because it is relatively new - and so far - every PS is different. Mine for instance, doesn't encourage compression garments of any kind - and as I am starting to look a lot  like Sponge Bob Square Pants sister - I want something that will give me back my curve.

I've asked a lot of questions, and the general answer is - 'it's normal' & 'your body needs time to adjust'.  The loosey-goosey talk on its own isn't the problem, it the lack of specifics, coupled with a one month wait time for a post -op appt that has me flummoxed. Anyway, I got an appointment for two-weeks post-op just to make sure that everything was on track. And it was. But now I think I may have an infection. There's a coin sized area along the belly incision that is painful, and red (Canadian coins are big). So I may be going back in today to have it checked out.

I read the pamphlet posted by lhw - and there's even a section on how to get out of bed properly. That's news to me! And it's sure nice to have some guidelines. I know logically that I can't do it the way I would like to - but I just developed a series of turns, pushes, and pulls that worked. In the hospital the bed made it super easy, but any adjustment in bed at home is still an issue.

Ahhhh - that's today's rant. Sorry.

Also, I had to take my dog into the vet this morning cus he's having tummy issues. I swear they might be sympathy pains. A month following my lumpectomies, he had to to have four lumps removed (all benign), so we recovered together. 

Robin - I hope you are calm comfortable and relaxed

I also found it weird that I was given no exercises after DIEP, but was given lots after MX. Even phoned my PS to enquire about exercises, and was expressly told NO exercises for a while. 6 weeks out I saw a physio last week who gave me exercises. My arm and shoulder are already moving much better, although the stretches overhead that I have to hold for a minute at a time are quite ouchy still. Just have to grin and bear it, because I want full ROM, and nothing less.

As for moving on, there are threads on here for people who want to stay in touch afterwards. Or we could always start our own thread in a few months, calling it 'DIEP 2013 Veterans' or something, where we could check in from time to time. I do feel a connection to all of you on here who have gone/are going through the same thing, who have inspired me, and are still doing so.

Damiana, that is great news about the lymphedema!!!!   Hope it stays away!!!  Ihw, thank you for the exercises. 

Catie, sorry you went through all that, and thanks for sharing. It means a lot.  I am so happy for you.  I know I seem to be freting a lot as my surgery gets closer, and I appreciate all words of encouragement.  I am a worrier from way back, and I just can't shut it off, but I am hoping that going into this with my eyes completely open is better than the way I went into my bmx, ignorant. I want to make better choices this time around. 

Ihw, sorry you were having so much discomfort, and I am really glad the exercises are helping you.  Thanks for sharing them.

Saw my PS this morning and she was impressed with all of my questions. Again it looks like everyone has their own preferences. She wants me off of letrozole (femara) for one week prior and two weeks post, stool softener for a few days prior. She says abdominal binder for 6 weeks post- four weeks full time and two weeks when active. She says I can swim 2 weeks after provided there are no problems and all is healing well. My surgery is on a Monday and she said I will be home by the weekend with 2-4 drains. I can shower as soon as I am able to be up long enough and just a cotton, front closing bra for after surgery.

This is really happening and I am super excited!

Bailey, I know what you mean about exercise before surgery.  After my bmx my yoga came in handy in the hospital.  Instead of the nurses having to roll me to get underneath me I would do a bridge pose.  They liked that.  As a matter of fact, that exercise is in the pamphlet Ihw posted.  The majority of those exercises are taken from Yoga. 

Mamalou- I am but its getting much better as of this week. Hard to look at for sure.

Wow fifteeen pounds lost in two weeks? Sign me up! :-)

Fifteen pounds in two weeks, IMHO, is eleven pounds too many.  For me, anything more than a couple of pounds a week are just hiding behind me, waiting for me to eat one M&M, and >POP< there they are again. Fast off...fast back on!

Mammalou, what was your PT for after mx and rads?  Was it your shoulder?  Both my sister and I have had shoulder issues related to BC treatment, and apparently it's pretty common.  So I have to ask...is it all better now?  Did the year of PT take care of it?