NOLA in September?
Comments
-
I was off the boards for a day and can't believe how many posts I have to read!
Betsy - I'm glad that you're feeling well. I wished I had pain balls when I woke up after stage 2. Dr. D must be very kind. I hope that you lose some drains tomorrow!
Rosemary - It's good to see you back here. I was trying to remember if you had your non-diep side lifted or had fat injections during stage 1. I'm sure that you'll get evened out at stage 2!
All the BRCA posts are interesting. My PGM and 3 of her 4 sisters had BC, my dad & 2 brothers had prostate ca and my brother was diagnosed with prostate ca at age 50 just months before I was diagnosed wiith BC. I had the Ashkanazi panel done and since my insurance denied the rest, it wasn't run. Argh. I had signed the papers saying I would pay for it. Didn't change my treatment BMX and tubo-oophorectomy but for my kids, I still want to have the complete test with BART and maybe Cowdan too. I had a breast hamartoma & cowdan can be associated with those. I figured that I would wait a few years because new mutations may be found.
0 -
ugh . . . Well, when I went to see my local PS last week so he could check my incisions and the spot where I had an infected stitch that he pulled a few weeks ago, (and admire Dr D's work, which he did), he said - what's that? - pointing to the bulge under my arm. I said "I don't know, but I am going to have Dr. D excise it". ( I had already sent some pics and spoken with Jeanine a few weeks ago). He (local PS - very good and very supportive) said - "Well I think it is axillary breast tissue. You should have it checked out first". So . . . I had my yearly appt at my GYN today and I asked him - "What is this?". He said, "Oh, probably breast tissue". !!!!!!!!!!! So I called my breast surgeon here, and bullied her office staff into giving me an appt on Thursday morning. They originally offered me Dec 8th. Uh no. Not that close to my surgery. So anyway, I will see her on Thursday and have her ultrasound it and see what else she has to say. And then if it is breast tissue, I will call NOLA and see if they have to have the breast surgeon remove it, or if Dr D can do it. Part of that is dependent on what the surgeon says on Thursday. I am not too thrilled about seeing her. First because of the snarky remark she made before I had my DIEP done, and second, because I saw her in April and also a couple of other times prior to that when it was causing me some minor pain, and she said nothing about it possibly being breast tissue. And I didn't even think of that as a possibility! I guess I feel that if I have been walking around with this excess breast tissue since I had the bilateral mx 4 years ago, what the hell is that all about??! I did so many other things to minimize my risk of recurrence, and then this?! I know that it is not possible to get all the breast tissue out, and that there will always be a small amount remaining near the chest wall or skin or whatever, but this is an obvious bump!! This is on my non-cancerous side, so that is good, anyway, but I had both breasts removed for a reason! (By this surgeon) I am still hoping that is not what it is, but I may not know until they actually remove it. And even then, odds are there will not be any cancer in it. But still!!! What a shock! I know there was another lady on here a few pages back, or on another one of the DIEP forums, and she was going through something similar. What a pain in the butt. Anyway, hope it doesn't mean much of a difference in the actual surgery time, the recovery, and whether I will need a drain or not. Fingers crossed. Anyway. Thats the mystery tissue . . .
0 -
Cider, I didn't realize there was so much variation in scar placement. Wonder if it's one of those Dr.S vs Dr.D vs Dr.M things, or if it has to do with our anatomy? My DIEP scar is 4 inches below my new(and old) belly button, and I have no vertical incision and no hard spot! From watching the Beth Israel DIEP video, it looks like your belly button doesn't actually get moved... An incision is made around it and just the skin gets rearranged ( pulled down), and a new " hole" cut in your skin for it to peek out of. (Sorry, Dana. I'm sure this just totally gave you the heebie-jeebies).
0 -
Amy.. I remember the island of breast tissue post.. she had used Dr Lagarde for her MX... you had your MX elsewhere, right? I know Dr D said he has reconstructed women who already had their MX and maybe had implants, and has seen significant breast tissue and has the BS here remove it. I have a bulge of "fat" there too, and Dr D says its swelling or fat that slips back as you sleep... so it may be breast tissue or it may be fat.. Just today I said I wanted it gone, and I know he lipo'd there (i can feel the bruising) but it is still puffy.
My ab scar is at pubic line and just above my cesarian scar.. I didn't have a lot of fat in abs so it also sort of dictates location... and I did have that knot, but I think it is gone now... next time I am naked I will feel for it.
0 -
Thanks for the info, Betsy. I am hoping that if they decide it is breast tissue, and I am fairly certain that it is (in retrospect of course), that they can get Dr LeGarde in to remove it properly, and that scheduling is not an issue. I am 4 weeks away from surgery, so it is coming down to the wire.
My scar (ab) is pretty low also - just above pubic hair- and no vertical incision. No hard spot either from what I can tell . . .
Jerusha - kudos for watching the video! You are brave! And have a stronger stomach than I do!
0 -
OK Jerusha, I just got out my ruler. From bottom of belly button to DIEP incision is about 2 1/2 inches. My vertical incision is about 3/4 inch. With myofacial release my DIEP incision moved up about 1 inch. After surgery the scar was smack on my hip bone; now it's above my hip bone. When I got my blue markings, the top line went below my then belly button. I had LOTS of loose skin below my belly button from pregnancy. I understand how the actual belly button stays intact and the skin is pulled down. That gets me to another topic that I don't understand: how that skin can pull down! It's one of my questions for my Dec visit. It's been a while since I watched that video. I must watch again!
OK. In my effort to find a drawing to post I found this page: http://www.microsurgeon.org/diep This briefly explains how the skin is able to be pulled down. It's also a nice explaination of the surgery I hadn't read before (like the patient body positions). In my case, the upper incision was placed below my umbilicus.
Woo! I can't wait to find out what will be done at stage 2. I must get working on posting pics to timtam's site.
0 -
I think they cut a football shape just above belly button (I saw my photo of my open belly) and it was eye or football shape.. then I think they grab all the fat (even above belly button) and stretch the skin down to lower (pubic) line... as they pull down the shade of skin, they cut a new hole for the belly button and stitch it in place.. BUT Dr D said the hard knot just above ab scar was part of the original belly button. Maybe if you have lots of ab fat, you are less likely to get the knot... the leaner you are the less wiggle room they have... just my guess.
0 -
Ooooh. Nice website Cider! I can't believe your incisions moved so much when you got "unstuck". I had myofascial release done on adhesions and scar tissue in my axilla and upper chest and it certainly felt like things were moving and stretching. (Felt great). Interesting to have an actual marker, and see your scar move!
0 -
Betsy, lots of ab fat here!! And HOW did you get to see a photo of your open belly??
Jerusha, it sort of freaked me out to have the scar right on top of my hip bone. When I was not fat, my hip bones stuck out a lot (even when I wasn't skinny). I always liked feeling my hip bones and having the incision stuck there was sort of distressing. Sometimes when I sleep on my belly, my hands are on my hip bones; I see my daughters sleep this way, too. So there is sort of a comfort factor there, I guess. I'm glad to have my hip bones back!
0 -
Betsy, glad you are back in #208!!! I liked that room....
Amy, there was someone else here with an "island" of breast tissue in the armpit area that showed up on breast MRI I think. How can they be sure what it is? Can they determine it is absolutely breast tissue before removing it?
0 -
Paula.. when they were photographing me pre-blue marker and post blue marker, they had all my pics on the computer screen, many of which I had emailed them this past summer, but as was looking over Jeanine's shoulder, I saw the one they took with my belly wide open... and I asked if that was my open belly and she said yes.. I guess they document everything.
Beverly.. Jamie Dean (tall pregnant nurse) remembered that I like 208, so thats what I got...
Island of breast tissue... can't remember who it is.. but I can look it up cuz we were PM'ing... She said she had Dr Lagarde as her BS, which I asked because I had Stolier and said very clearly to take it all... breast tissue, fat all of it.. I think the pockets of "fat" under armpits is fat and swelling. I asked in August what it was and Dr D said that as we lay on our backs, the fat sort of migrates back.. so that may be some of it, and swelling could be the rest. I think it is common... and yesterday before surgery I asked for it to be gone and it is tender, so I think he lipo'd there.. and now is just swollen.
0 -
Amy that is so interesting, as someone else just posted about the island of breast tissue. I'd never heard of it before. I hope things come together for you without much stress.
0 -
Hi all--So, I'm having my double mastectomy on Jan. 4th by Dr. Stollier and then hip flap by Drs. Dellacroce and Dr. Sullivan. (Is it possible to be added to your list above?) I'm sure you get this question all the time, but I'm wondering what I need to pack as well as what I need at home for when I get back to LA. (I'm sure someone has suggested this before, but perhaps a word document that lists the answers to these basic questions could be created so you very generous ladies don't have to repeat what you've probably said so many times before?) I have no idea if that's technologically possible--just a thought.
So far I know I should pack some loose-fitting tops (that button down), as well as some stretchy yoga-type pants. What else do I need? I'm also trying to get my place ready at home...any thoughts are most appreciated! Best, Debbie
0 -
Hi Debbie.. NOLA gives you many things including shampoo, girdles, compression bra, drain pouch etc...
What you need might include:
Also, when home, I had trouble reaching for towels that were too high or plates etc.. so maybe get things you will need often at a good height... Plan to have meals delivered by friends, because you have a 10lbs weight restriction so even boiling a pot of water for pasta is too heavy.tooth paste, brush, floss throat drops (get very sore from tube) oversized undies - to go over girdle oversized button down shirts slippers body wash, shampoo,conditioner (travel sizes), lotion, face cream (for hotel) blistex - they provide this as well slip on shoes/flip flops phone (charged) ipad (charged) ipod / charger books, magazines and puzzle books tanks or wife beaters constipation meds - colace yoga pants laptop and charger cell phone numbers etc for family 0 -
Hi Debbie.. NOLA gives you many things including shampoo, girdles, compression bra, drain pouch etc...
What you need might include:
- toothpaste, brush, floss
- throat drops (for sore throat from tube)
- oversized undies - to go over girdle
- oversized button down shirts, or just loose shirts
- hoodies (if weather appropriate)
- pjs (night gown) and light robe (they provide a big robe)
- body wash, shampoo,conditioner (travel sizes), lotion, face cream (for hotel)
- slippers
- slip-on shoes or flip flops
- blistex - they provide this as well
- phone and charger
- lap top and charger
- ipod and charger
- books, magazines and puzzle books
- tank tops
- yoga pants
- constipation meds (colace for after discharge)
- phone numbers of family and friends
Also to prepare for your return home: I would put things that are high up to a reachable location (towels, plates etc) as reaching can be difficult AND plan to have dinners delivered.. you will have a 10lbs weight limit, and even boiling water for pasta is too heavy
0 -
That's a great list, I know for stage 1 I took way too much. For stage 2 I took half the clothes and still didn't wear some of it. I lived in tank tops and yoga pants over my girdle, and a zip up hoodie or pj's. I had a tank top nightgown type thing that I wore most of the time. The flip flops were great and slippers as well.
0 -
And some things can be seasonal... hoodies in January is good... but not this week... temps are up at 80 degrees.. I found also that I didn't need button down tops, but liked wearing just loose tops. I also used the drain pouch they provide to sleep in, but used an over the shoulder bag (the bag the Qball comes in) to hold my drains.. it worked great. And I forgot to add pjs... I like wearing my soft pj "dress" rather than a hospital gown.. My pj is like a knee length sleeveless dress.. I will add pjs above.
0 -
I was there in November once so I know, and you're right the hoodie was more for leaving the center, going to the airport etc... Also it had pockets for the drains. The other tip I like to pass on is for showering. The hospital will give you what is called a kangaroo pouch for the drains. They work great, I used my extra one only for showering. They gave me a piece of rubber tubing to put around my neck but it was such a pain. So I would just unbotton the pouch and swap it out for showering, then hang it up to dry in the bathroom. Much easier for me I found.
0 -
Well, things are finally coming together! Dec 5 th will be here in notime! I would like to know if I can see photos mentioned TimTam? Thanks! Kathy
0 -
send a PM to TimTam and tell her you'd like access to the photo gallery... she will hook you up.
0 -
Wow...what a great list...Thanks! One question though...a sore throat from what tube? I don't really know the particulars of what to expect from the operation I suppose in that regard. Anything else medically to prepare for immediately before or after the surgery? Thanks!
0 -
Breathing tube used during surgery. I think most people have issues with constipation. I know I had a really dry mouth and drank tons of water and was glad I packed my Chapstick. My stage 1 was a year ago so it's hard to remember all the things. You will be sore but I didnt find it too bad, have 4 surgical drains most likely. When those come out varies on the individual. Have you ever had any experience with the drains? They are called a j pouch I believe, you can look them up on google. I did my best after stage 1 to walk as upright as I could so not to stay hunched over. The feeling for me after DIEP because mine was delayed, almost felt like after having a baby when the milk comes in. The new breasts seemed heavy, especially when getting out of bed. That will settle down S your body adjusts. As for going home, I too had a recliner and slept in that at first. I had my Mom with me for a week, I probably would of been fine on my own but I'm a single Mom. So as others have said the 10lb lifting restriction makes it a little hard to get things done like laundry, taking out the garbage, etc... I think that is lifted after 4 weeks??? I started sleeping in my bed with lots of pillows after a couple weeks. I will think of more I'm sure but feel free to PM me any questions you have! You're going to do awesome and love it there as well as the results!
0 -
Just some other stuff for after you come home. I stocked up on a lot of stuff, basic cooking supplies, freezer meals, toilet paper and paper towels, pet food, and whatever things you may need for the couple weeks or so after you return home.
0 -
Hi Debbie, I believe we have the same oncologist and I think he gave you my contact info, so feel free to contact me anytime! I also took Hibiclens and always washed with it the two showers prior to surgery, a pen for recording drain output on the forms that will be provided, and a neck lanyard for the drains while in the shower. The weather changes quickly (last week was really cool, and I've been there in January when it got down to 26 degrees) so plan for that possibility. I'll be there the 10-12th, so we may run into each other!
I think some gals end up with a scar from the old belly button because they don't have as much skin to pull down. If you have enough so that it can be pulled past where the horizontal incision is, there won't be a vertical line or hard area. Because Dr. D pulled me down tighter last year but there wasn't enough skin to pull everything down below the incision line, I have a scar from the old belly button midway between the new one and the horizontal ab scar. It has a bit of hardness below it. He revised it for me a couple of months later and it was just a tiny thin line, but we moved our business about 10 days later and I wrecked it by carrying heavy boxes around.
0 -
Hey, Dragonfly!! Sorry to hear you're so unhappy with your nips -- I, for one, wouldn't be surprised if you returned to see what Dr. S could do for ya. I know how much you love NOLA! My Stage 2b is less than one month away. I'm looking forward to the tweaking and the tats. Christmastime in the Quarters also has me excited. How's the new job and home?
0 -
Amy - I am sorry you are having to worry about possible breast tissue! My first thought was maybe a pocket of edema - especially if it is something that was not there initially after your surgery. It will be nice to have it looked at and imaged so that you have an idea of what is going on. Hang in there.
Dragon - so nice to see you on here!
Debbie - You are going to do great! The ladies above have given you a pretty comprehensive list. I am going to add Smooth Move Tea for the constipation issues. It actually works pretty well and tastes decent. Also, if you really back up - glycerin suppositories work wonders (sorry if TMI!!!). I loved having hoodies after my surgeries - but I had the short sleeve ones. They hide drains well and since they were short sleeved - I was able to use them when the temp was a little cooler or a little on the warmer side. I think they were a great option. Also loved having flip flops - even prefer them over slippers - unless you have the kind that you can really just slide your feet into - because chances are you may not be able to reach down very well initially!
... seems like I am forgetting something...
... Oh, yes, the drains - they are called Jackson Pratt drains - and like Dragon said - if you haven't experienced them yet, you could google them! 0 -
Oh, yes, and Debbie - I will also be in NOLA that first week of January. Would love to meet up with you if you feel up to it. I am really not nearly as crabby in person as I am on the boards... I think most (I hope) people that have met me in person would say I'm okay!
Which, by the way, for anyone that I have been especially crabby to - I am trying to fix that. It seems I have been perpetually pissed off for about... oh, the last year or two... nope, that is not it, I can narrow it down to about a month after my hysterectomy. Anyway, I am sorry! I am working on it - taking some anger management in the form of martial arts and directing my issues & negative energy toward a sparing partner, a kick boxing bag and "Bob". Hoping it works, because the crabby me is not very much fun and I am tired of it!!!
0 -
Cider 8: I too noticed that my DIEP scar is on my hip bone. I also always had my bones protruding out even when I do gain weight. It is freaky. I was wondering what happened to them and thought "how could it be moved?" What did you do? Don't tell me you redid the entier ab scar? I would love to have my hips back but not sure if I'm willing to redo the entire thing.
I don't have a vertical incision on my scar but I do have the knot. I did not have much ab fat but had enough for a unilateral. Most fat is on hips.
Nordy and SandyinParadise: The last day I'll be in NOLA is January 9th with a follow up at the Center @ 2:15 p.m. Would love to meet you all in person. Hope I'll be up to it. I don't know how you all start moving about so quickly. I didn't do much after stage I. Hoping I can do more after Stage 2.
Does anyone know if it's o.k. to workout and do aerobics after Stage I; I'm 9 weeks post op. My reconstructed side was a bit sore several hours after doing the elliptical for 25 minutes. Just want to make sure I'm not jeoporadizing my flap.
0 -
Surfagirl, I had Stage 1 about 6 months ago. So I have not had my ab scar redone. What I did was start physical therapy about 5 weeks post op for my lack of range of motion from the BMX. She took care of my whole body, which meant she did some scar release. Until I went to her I had no idea how much it took to soften up the scar, the myofascial release. I can't really describe it (google it), but she got it 'unstuck,' so I don't feel like it's a huge rope pressed against me. And I guess unsticking it moved it up some. You might want to try to find a physical therapist who has experience with breast surgery and myofascial release.
If I recall correctly, you can resume workouts 6 weeks post op. At this point you would not be jeopardizing your flap; I think it's revascularized by now. Your body is still recovering from the trauma and you also need to be aware of lymphedema. Hopefully someone else can give better detail than I can. But your flap is OK now.
You go, Nordy, with re-directing that anger! Sometimes I feel like I could knock down my oak tree with a baseball bat. Before chemo, that is.
0
