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NOLA in September?

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  • celtic_antique
    celtic_antique Member Posts: 351
    edited July 2011

    Amy --

    I live south of Buffalo in Fredonia, so I had my biopsy, mastectomy and tissue expander put in at Roswell. I cannot say ehough good about them. The extra mile they go for care leaves so much to be desired at other cancer centers, and I have visited, for consultation, quite a few. I am so sorry that your friend is going thru chemo, but heartened that she has you for a friend. She will manage better knowing there is someone there (physically or "connected") and have a supportive treatment at Roswell.

    Am still waiting to hear from NO, but, unlike many women on this board, I have time. Of course, I would like to know that I'm on the books, but also know that so many with active cancer need the doctors more. I am simply looking at reconstruction.

    How many here had surgeons (cancer and plastic) PUSH you towards implants. I had that sung to me so repetitively but center after center, doctor after doctor, even after I had laid out my research and reasoning as to why this was not a good plan for me. For others, absolutely, but not me. Like they were deaf. I so clung to the universal axiom about our choices, but felt, time and time again, that I was being pushed to a choice that was not mine, but theirs!

    Betsy, I think you have much wisdom in wanting to stay close to care until your temps resolve! It is a sign of something, and the helpless feeling if it spikes while you are traveling or once you have gotten home isn't worth another day or two of superb medical care, IMHO.

    I cannot have a DIEP because I had, vainly a few years ago, a tummy tuck, but I sure can relate to the healing issues. I wasn't prepared for how serious a surgery it really was and the difficulty of healing. I now know the TRUE meaning of 'core'! My empathy extends to all of you recovering ... take your time, take it slow and easy and heal at your pace. It DOES get better! And you have new breasts that are all you so that was/is worth the discomfort that will fade, for sure! Envious!

    My thanks to all of you for being here. I had been lurking for ages, haven't a support network here (family lives more than 500 miles away and daughter recently moved to CA!), so I am pretty much going it alone. Had just gotten my daughter thru a year of triple neg treatments when I had my diagnosis ... and I lost my 95 year old mother 5 days later. She was my rock and foundation, and she lived a long, wonderful yet hard life. I now write her long letters like I did when she was alive to let out the 'stuff' inside. I know she is with me, though I had not told her of my diagnosis.

    I seem to be rambling this morning! Sorry ... healing thoughts to all of you, thanks for listening, and keep your fingers crossed for me that NOLA is in my immediate future!

    Maggie

  • lesliet
    lesliet Member Posts: 44
    edited July 2011

    Kathryn - I'm sorry your having problems where is your hematoma? and do you have a reg breast  Dr..? When I got a fluid build up from lymph node or lack, my Breast Dr. went in and drained it. and has me gently rub downward motion in shower everydayall the way to the hip. now i have the large lumps on my hip bone from drains and the build up. But after they drained under my armpit and side breast  arm went down  because fluid had nowhere it go. so check with you breast Dr. 

  • JustLaura
    JustLaura Member Posts: 213
    edited July 2011

    Amy - I'm sorry to hear about your friend. She is SO lucky to have you for a friend and it is so nice that you were able to spend so much time there. What a huge help to her that is I'm sure. It is somewhat comforting with bc to personally know others and meet more (on this forum) that also have bc. To have a rare cancer and go through treatment would be lonely and I'm sure scary when you don't have anyone to bounce things off of. Have you read the book 'Crazy Sexy Cancer Tips' by Kris Carr (the ONLY 'cancer' book I received from friends that I am reading and would recommend). I am only halfway through it - but it is a very refreshing look at cancer. Kris has a very rare form of cancer too (300 - 400 diagnosed annually in the world) and speaks to that often with some tips to make it not seem so lonely. Just a thought. Your friend may get something from it.

    I'm also glad to hear about your tummy. Sorry not glad to hear you have it too - but I'm glad to hear it is normal. Everyone had always said how flat their tummy was after surgery. I (probably erroneously) think of my tummy as going from below my breasts to above my pubic hair. That is not flat now. Above my incision is puffy, very puffy. I am expecting that if it is swelling that it is gone by Stage 2 (in Oct for me) or if it is fat Dr D will suck it out for me. But until then I have to deal with this 'misshapen' tummy and try to fit clothes on it!! Plus it is SO tight stll.

    Also good to hear about the belly button. My dr basically said it did not look infected just draining fluid (but cultured it any way but it will be Thur or Fri before I get the results from that) and that there weren't any sutures in it!! I don't know what I'm feeling in there that is poking but now that I know it is not sutures I will spend more time trying to get it out! I'm hoping at 10 weeks out that mine will be ok too.

    Betsy - I hope that fever breaks today and you can work on getting better and get out of there. Maybe you won't be at the Hope Lodge at all - you will go from the hospital straight home. I don't think that would be bad at all. That hospital is SO clean and nice. I thought our hotel room at Homewood was so dirty in comparison (but just a normal hotel room) and I had to be a clean freak to make sure everything that touched me (or really my incisions) was clean. It wasn't easy there - but in SCSH it is a piece of cake. 

  • JustLaura
    JustLaura Member Posts: 213
    edited July 2011
    Maggie - I hope that you hear very soon. That waiting is the pits!!
  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    I think (at this moment) that since I only had hip flaps that I may forgo the optional tummy tuck in November and just get lipo... I don't have a big tummy bulge, but more love handle issues and muffin top, but will discuss with dr d on Thursday.

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    And Laura... My plan is hope lodge from discharge til Friday morning... Then my husband flies in and we are off to homewood suites til Monday... No way to stay at scsh for another 6 days... I will hope for cleanliness.

  • JustLaura
    JustLaura Member Posts: 213
    edited July 2011

    I didn't realize that you were staying that many days. You are right no way to stay in SCSH for all of that time. Homewood wasn't dirty (at all) just not as clean as the hospital. And the nursing staff was not nearly as responsive. ;)

     Take care I hope that fever is gone! 

  • bdavis
    bdavis Member Posts: 3,192
    edited July 2011

    No fever yet today so fingers are crossed.

  • celtic_antique
    celtic_antique Member Posts: 351
    edited July 2011

    This news bulletin just in!! Liz phoned and Drs. Sullivan and Dellacroce have agreed to take my case!! Date TDB, but Liz says she will call back later this afternoon. It took me a while to quit bawling ... I can actually breathe right now. Hadn't realized how long I had been holding it all in! Thanks for all of the words of encouragement. Am SO glad to have found you all ...

  • Dragonfly1976
    Dragonfly1976 Member Posts: 1,552
    edited July 2011

    That's excellent news!!! You're going to be so happy with the center and the results :)<3

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2011

    Betsy, I would skip plication (stitching tummy muscles together - aka tummy tuck) if I had to do it over again. I like your plan to just do lipo. I have no bulge really and it is a huge honkin deal, unless you really need it. A whole lot to go through for very little benefit, if you ask me. Unless you really have a tummy sticking way out. My take. Ask Dr. D. I get he'll say the same thing. Others may feel differently, but this is my take.

  • celtic_antique
    celtic_antique Member Posts: 351
    edited July 2011

    Just heard ... August 23rd. Anyone going to be there then? Comboned consult then surgery. At long last! What a day ... I will sleep well tonight!

  • djfrro
    djfrro Member Posts: 55
    edited July 2011

    Betsy, I hope your doing better and have spent the day fever free.  that really sucks.

    I got all my drains pulled today and am headed home tomorrow, I need to figure out when I can come back for phase 2

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2011

    Celtic, I will add you to the list, stage 1, what docs? do you know if DIEP or GAP or stacked? Just fill me in and I will add.

    DJ - Yay for no more drains!  

  • JustLaura
    JustLaura Member Posts: 213
    edited July 2011

    Yeah Celtic I'm so glad that the waiting is over and you are excited with the news!

  • kaitsmom
    kaitsmom Member Posts: 251
    edited July 2011

    Thanks, all, for your supportive comments about my friend.  I will definitely look into the book that was mentioned and see about sending it to her.  Apparently her cancer is so rare that most oncs will maybe see 1 or 2 cases in their entire career!!  It was hard to leave her today but I hope to go back up after my stage 2.  louis13, bless your heart! In my 20s or 30s, I wish!!  I am 53!!  And I feel every year of it most days!  I guess my pic must be pretty flattering after all!  I do feel lucky to have good skin, and a youthful attitude!  I was diagnosed 4 years ago at age 49, a couple of weeks after my birthday.  I have thought about delaying my surgery by a month or so, but I really want to try to be done by the end of the year, primarily for insurance purposes, but also because I really want to close the whole reconstruction portion of this journey.  I worry that if I delay this part, and then for any reason had to go back for more stage 2, (a stage 2b), , or heaven forbid, I had any problemsI would run into a new year, and new deductibles, out of pockets, etc.  So I will just forge ahead, I think.  I can understand how you must feel, especially after just finishing chemo.  I had my implants put in 6 weeks after chemo.  I did ok but it was a bit nerve-wracking - it felt so soon.

    Maggie, I am so sorry you are going it alone with your treatment.It sounds like you have been through so much with your daughter, and then losing your mother.  The women on here have been my biggest support as I am going through reconstructing my reconstruction (!), I only wish I would have found this board when I was diagnosed.  I think you are very brave and wise to stick to your guns about what you want and not be swayed.  Many docs here in the Raleigh area are big on the implants, since I think it is much easier for them and certainly much quicker.  I'm sure the implants work well for many but did not for me.  Anyway, you must be so thrilled with the news.  I wish I was going to be there in NOLA in August to cheer you on, but your online support group will be here! 

    Laura - thanks for your kind words.  I am glad I could be there, and she is someone I am proud to call my friend.

    Betsy, yay for a day with no fever!  Maybe tomorrow will be the day!!!

    Spring - Dr D actually did tell me that plication was a lot to go through for not a big benefit, in many cases.  When I had my stage 1 in May, he said he did not think I would get a whole lot of benefit from plication, and I have pretty much ruled it out. (Wonder if he meant "No, that is just plain fat there - plication will not help that mess"?? haha)  This recovery has been tough enough for me, I cannot imagine going through an even longer recovery in stage 2 by adding that.

    Yay, dj, drain free!  Isn't it a relief?!  Freedom!!!  

  • kathrynla
    kathrynla Member Posts: 406
    edited July 2011

    Hi. Still haven't caught up at all. Flew into LA from NY today (very delayed) and leave tomorrow for Mammoth.  I hope to have some time there (and a good internet connection) so I can read what's going on.

    Meanwhile, my friend who I was hoping would go to NOLA (she had a consult while I was there for stage 2 and loved them) met with her local oncologist.  Like everyone she is less than eager to see her patient travel halfway across the country for a breast reconstruction. So she is sending her to Dr. Anderson at City of Hope for a consult. The onc thinks he does hip flaps. My friend is just having one breast reconstructed after chemo and rads. The oncologist is worried that there will be complications with the radiated breast. Since I didn't have this done can anyone give me insight into this. I know NOLA works on lots of radiated breasts. Should she have a greater concern? Is she more likely to have complications?  I would love to get some answers to pass onto her (or maybe get her to read this thread!)  Any insight would be helpful. Thanks!

  • nowords
    nowords Member Posts: 70
    edited July 2011

    I had neo adjuvant chemo, then mx, then rads. I had delayed uni stacked DIEP 8 weeks ago and have not had any issues. I was 18 months or so out from rads. Dr. Massey in NOLA did my surgery. I think maybe if you know you will have DIEP...they may put an expander in prior to radiation. Has your friend already had treatment?

  • kathrynla
    kathrynla Member Posts: 406
    edited July 2011

    Thanks nowords. My friend finished rads about 2 months ago, and chemo about 4 or 5 months ago.  She is going to do a unilateral (and tweaks on the other breast) with a hip flap.  She does have an expander in right now.

  • Jerusha
    Jerusha Member Posts: 339
    edited July 2011

    JustLaura, I am 11 weeks out from Extended DIEP and my tummy is still disconcertingly poofy, tight,and sore inside and out. It does start out better in the morning, and get worse as the day goes on, but I am frankly uncomfortable most of the time. Poofiness is belly-button downward, not above. No flat tummy here. I really look just the way I did when it was full of fat, but I know it's not fat; they don't leave any behind. I need to schedule my stage 2 in October, sandwiched between Parents Weekend at college and Thanksgiving, ( yes, my life will still revolve around my girls...) but I am afraid that if they poke that lipo cannula into my belly there may be a VOLCANIC EXPLOSION! And I can hardly bear the thought of any more swelling post-op...

    Like you, it is some comfort to me to know that others are in the same boat, at least that it is normal, to some extent, but sorry that anyone is having this persistent problem. Certainly hope that yours resolves at a faster rate.

    I know, Spring....how many months????

  • Del11
    Del11 Member Posts: 398
    edited July 2011

    Jerusha:  what is an Extended DIEP?

  • Springtime
    Springtime Member Posts: 3,372
    edited July 2011

    Kathryn, natural tissue recons are recommended for radiated breasts. NOLA is ideal. Other options involve muscles like Lat or Tram. I hope your freind gets over the initial local doc shock (we all go through this) and goes to NOLA!!!

    Hi Amy!!! We should do lunch sometime once you're home and recovered from the travel. All: Amy does actually really look 31-32 in person. I've met her! :) Nordy looks even younger, I've met her too! Nordy looks like a kid and Amy looks like her big sister. There. I said it!!!

  • celtic_antique
    celtic_antique Member Posts: 351
    edited July 2011

    Dr. D will take the lead. Not sure yet, but most likely a GAP as I have had a tummy tuck in the past and that usually messes up the insides for DIEPs. Waiting for my packet with all the details. Liz called me 7:30 PM last night! The lady puts in long hours and I will have to make it a point to meet her when I get to NOLA for sure!

  • Soccermom4force
    Soccermom4force Member Posts: 311
    edited July 2011

    Celtic Antique,

    YAYYY! So happy for you! I have followed your queries to Dr D and was so hoping he'd agree to take your case :))



    I had (delayed) stacked DIEP with small implants in 2008 and was a challenging case. I am very happy with my results and hope the same for you!
    Yes! Liz is truly dedicated to her profession and is a lovely lovely woman :)

    Warmly,

    Marcia

  • cider8
    cider8 Member Posts: 472
    edited July 2011

    I lost my long post I just wrote!  Blargh!

    Celtic, congrats on your date!  I'm so glad you joined us.  I've found this thread to be essential on my journey.

    DJ, congrat on being drain free!  Your recovery sounds likes it going smoothly.

    Amy, you are so good to your friend.  Thanks for sharing.  She's got my prayers.  I've decided agains plication at this point.  I think my belly problem is fat at this point!  I've got time from chemo to stage 2 to try to shed some fat.  I won't be able to fit in a 2b this year if it comes to that.   

    Laura, I've got the bloated belly above my incision.  I was hoping it's from chemo!  I had/have a lot of belly fat--the better to build some breasts!  PT has helped me overall, but she really loosened up the belly scar to help me feel comfortable.  I sleep on my belly now.  I'm halfway through chemo now, so it's about time for me to schedule stage 2.  I sort of dread another surgery, the recovery, the bloating, etc.  But it needs to be done!  I feel so strange right now: bald, bloated, weak, dog eared hips and my cancer side breast needs work desperately!  

    Sandy, it sounds like your Breastoration work and travels went very well.  

    One question for DIEP ladies:  was your DIEP incision above or below your belly button?  Mine was just below, so I have this short little vertical scar along my DIEP incision where my original belly button was.  A lot of DIEP markings I came across have the DIEP incision marked just above the belly button.  Just curious.  My babies stretched out my belly below my belly button, so I had plenty of extra tissue below the belly button.  So much so that Dr S just lit up in delight over it!

  • JustLaura
    JustLaura Member Posts: 213
    edited July 2011

    Thanks Jerusha and Cider - we all seem to have the same belly composition. I didn't realize that they take all of the fat out so I guess this is just swelling so that there is not much I can do about it. As Jerusha said it is pretty good in the morning when I wake up but one of the first things I do every day is walk my dogs 2 miles. By the end of that it is tight TIGHT and stays that way all day. I have gotten used to it - but it would be nice to be able to wear normal clothes again and not be so 'misshapen'. I hope I don't have to wait until my Stage 2 in Oct since it will be pants weather in CO before that I have yet to get into anything with a waist band, only pull skirts and dresses for me!

    I am hoping to start PT soon and maybe it will help me somewhat. When did you all start? I am 6 weeks out from surgery and since I can 'restart normal activity' now I'm assuming it is time for PT too. Is that right? 

    Cider I never realized that is my 'former' belly button - but of course it is!! I wondered what that vertical part of the scar was right in the middle!

    My incision was below my belly button right above the pubic area. 

  • louis13
    louis13 Member Posts: 195
    edited July 2011

    getting little panicked about some things need to order..have got to do something about bedding...recliner is really not an option where i live, so am looking at this sort of bed pillow support arrangement..ie, kind of like heavy duty foam wedges, one for back, one for under knees, one to support mid section..so you can take apart and move elsewhere...is that going to work???? 

  • Del11
    Del11 Member Posts: 398
    edited July 2011

    just go to Target and buy a stack of cheap pillows (and cheap pillowcases). You can pile them up however you need them.

  • Jerusha
    Jerusha Member Posts: 339
    edited July 2011

    Louis, I had one of those set-ups that I bought before my MX surgery last year. I have liked it for daytime-- lying around on the bed, but have never really liked it for sleeping. I found it a bit too hard, and too restrictive. Initially my nest of pillows was at ELEVEN!!! ( Could barely even see my husband . Haha). I have gradually cut down, and now am down to about half! This was a perfect arrangement and I did not feel that I needed a recliner. Pillows behind your head and back to keep you semi-upright, on either side to support your arms and keep you from rolling to the side, and one or two under your knees to keep you flexed....That plus some vicodin and I was pretty content !!!!

    I stayed at Homewood after my surgery and between the 2 beds, there were 8 or 10 pillows already there. So, I'd go with pillows as my first choice in purchases....LOTS.

  • cider8
    cider8 Member Posts: 472
    edited July 2011

    Laura, they don't take out any fat at stage1 other than what they harvest.  So all that above the incision line is still the fat you started with!  I don't quite understand how the belly heals from stage 1.  My understanding is that the fat from above is lifted and pulled down?? to meet the bottom.  And then it feels like the DIEP incision scar tissue gets stuck to the fascia that doesn't have any fat to keep it even.  I also think that the docs work on the scar tissue at stage 2 as well.

    I started PT just under 5 weeks.  I highly recommend finding someone who has worked on post-mastectomy patients.  I love my PT!!  Going through chemo, she's just been working on soft tissue, but that's been a lot of work; old stuff and new stuff.  Stretching exercises for me at home.  She talked about the ideal timeframe to work on releasing the scar tissue, as it also continues to form, but I can't remember what she said exactly.  I think releasing before 6 months, but it continues to form for about 18 months.  After 18 months it's harder to make changes, but it can be done.  I think scar tissue is easier to break down as it's forming.  Next week we'll see how my strength is to see if we can start adding strengthening exercises yet.  

    I found this just now:

    General Timeline for Healing & Scar Tissue FormationWeeks 1-2 - The body begins healing and is working to close the woundWeeks 3-6 - The body throws down an incredible mass of scar tissue.  During this time-frame, you may actually feel stiffer than during the first two weeks.  Morning stiffness is common.  "Bad days" outnumber the good.  Exercising within surgical precautions is critical during this stage, although at times you may not feel as if you are accomplishing much since the scar tightens up quickly again after exercise.Week 6-8- scar tissue formation begins to slow.Week 8 - The injured area suddenly begins to feel just a bit betterWeek 12 - Definite improvement noted.  Scar begins to soften and become more supple.Months 4-6 - Swelling goes down significantly and motion improvesMonth 6+ - The body is now breaking down scar tissue faster than it is laying it down (although scar will continue to form for over a year).  You now begin to forget about the injury or surgery except for the infrequent bad day.

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