Charleston Bound, part 2

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited June 2012

    Wow, 4 hours and 6 hours!  A six hour surgery and still out patient? 

    I guess I'll find out down the road what I will need.  I thought it was just Stage 1 and Stage 2 . . .

  • bdavis
    bdavis Member Posts: 6,201
    edited June 2012

    It is usually stage I and II, but sometimes you may want a tweak.. I am getting a stage IIb because I want it all to be perfect... my choice.

  • jacee
    jacee Member Posts: 1,384
    edited June 2012

    Pink Heart...my first stage 2, I had a big chunk of necrosis that had to be removed, and then needed a lot of fat added. I had about as much lipo as you can have. Asked for some sculpting in the pubic area. I think Dr. Massey is very thorough. Stage 2 B I had donor scar revision, tons more lipo, dog ears removed, more fat to the breast that had necrosis removed. Then she removed a possible skin cancer from my leg, and 9 moles on front and back and numerous skin tags. Also some loosening up of some scar tissue under my arm from initial mastectomy and axillary node disection. So, it wasn't huge like Stage 1 ( mine was 11 hrs), but just a lot of little things done. I had no problem getting released and then traveling home the next day.

  • jacee
    jacee Member Posts: 1,384
    edited June 2012

    I forgot...I also had both nipples reconstructed during Stage 2B.

  • LindaG47
    LindaG47 Member Posts: 400
    edited June 2012

    Hi Liz,  I am so happy to hear you are doing well.  I have thought about you many times and am so glad you posted.  What date are you scheduled in Oct?  I am also going in Oct.  I would love to see you again.  Who will be going with you this time?  I know your son went last time.  Is Charleston girl still around?  You sound like you are amazing and happy. Smile  That is great!  Hugs to you!

  • GointoCarolina
    GointoCarolina Member Posts: 753
    edited June 2012

    cascader, how are you doing? Has the redness resolved?Great that you had a pedicure and I think the mood is perfectly normal.This is an emotional time.Take care.

  • cascader
    cascader Member Posts: 599
    edited June 2012

    Hi Panda. Yes the redness is a bit better, lighter in color and not quite as sensitive. It does seem to get worse at night. The cause is my radiated skin, which has always given me problems. I am feeling pretty good, 3 weeks today. Had a bit of a down moment trying to visualize the end results, but better now, I trust in my doctor and the process. My husband gets back here tonight then I fly back home in Monday. 3 flights and then a 2 hr drive, 18 hours of travel door to door. I could be in Australia by then!! Guess that is what I get for living in the middle of nowhere. Looking forward to home but sad to be leaving my charleston bubble.

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited December 2012

    What's with the bunny tail? I have one, 8 weeks out of double mx and bilateral SGAP, wonderful Dr Kline and Craigie, but what's with the bunny tail? Do they fix it completely ?

    First time posting, but glad I found the site. I stayed 6 weeks in Charleston, had some issues related to my weight, but wanted to be there and glad I was. Stayed at the Hope Lodge, American cancer society - fantastic experience. East Cooper Regional Medical Center Best hospital and nurses ever!



    Catie

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited June 2012

    Lucky me, motion sickness even on swings, asked for patch before surgery - no nausea!!!! Had some on hand bc my hx of motion sickness, I'd ask if the doc to rx it before you go into surgery, put it on the night before!

  • Downey30
    Downey30 Member Posts: 337
    edited June 2012

    Hi gma10,   Yes, they do fix the bunny tail at Stage 2.  Mine was pretty big but some of it was swelling.  I guess it's from having the hip flaps taken creating the divots on each side.  No worries.

  • bdavis
    bdavis Member Posts: 6,201
    edited June 2012

    I have had stage II and still have a little puffiness back there... so I will see what they can do at stage IIb.

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited December 2012

    I have the divots too....do they fix that as well? I had a failed flap (4 days into it) but other flap is doing well. Will go back for a stage 1b I guess possibly a pap when I'm healed and lose some weight. Had wound opening bc of gravity on my back, donor site, but Dr got me back to East Cooper ( and on the magic mattress) two times!!!! When I've lost enough weight I'll go back and hopefully not have the complications. Fantastic drs, though. Was seeing them 2x a week, had two house calls while in Charleston when wound opened on donor site. Flap on my radiated side is fine, with a little eschar that is being packed to heal. Anyone have that problem or issue????



    Second time with bc, first was 18 years ago, had lumpecctomy, radiation and chemo. This time, other breast but did double mx.



    Could not give enough kudos to Drs Kline and Craigie and Baron - I'd travel around the world to go to them. Compassion, caring, availabilty, staff and just plain great Drs.



    Hope lodge was the best thing going for having to be there so long, they just kept extending my departure day to accommodate me. Next time, though I will go the rental of a VRBO condo and plan on a month, with 2 bedroom, 2 bath, as will be easier on caregiver to have own bed and bath.



    Thanks for info! Good to hear experience from others.



    Catie



    My husband said it best, I won't be going back until I forget the pain.

  • cascader
    cascader Member Posts: 599
    edited June 2012

    Gma10, I too have a bunny tail. Had a uni sgap 3 1/2 wks ago. Dr Kline said no problem fixing it at Stage 2 which I will have in December. I also opted to stay here longer, for one month, rented a place from vrbo, 2bdrm 2 bath 5 min from hosp. So glad I did, no complications really, but nice to see the docs twice a week for reassurance. I do have an area of pretty bad radiation damage under my breast and considering hyperbaric therapy. Anyone here do that??? Fly home to west coast

    on Monday, but can actually say I am now excited for stage 2.

    I am sorry for your complications , I hope you continue to heal , this is not an easy journey we are on but I am so thankful to have all of you!

  • bdavis
    bdavis Member Posts: 6,201
    edited July 2012

    Cascader, there is a woman on the 40 something thread "readingmama" who had hyperbaric treatments... PM her.

  • cascader
    cascader Member Posts: 599
    edited July 2012
  • GointoCarolina
    GointoCarolina Member Posts: 753
    edited July 2012

    Wow,cascader,it does not seem like it has been a month!Have a safe trip home.  gma10,in my phone consult with Dr.Kline he mentioned a special mattress they use for SGAP patients,is that the "magic mattress" you are talking about? I would love it if you would post more details about your surgery and recovery.I am scheduled for delayed bi SGAP in February,long time off,but have to change insurance.Many many thanks to those of you that post about your experiences!!!

  • cascader
    cascader Member Posts: 599
    edited July 2012

    Panda, I know , it really has gone by fast. I actually would like to stay.. The combination of being close to the docs for weekly reassurance and the thought of spending the summer on the beach at Isle of Palms is enticing! Ah, but yet the real world calls me back.

    Magic mattress? Nope, not me, but I was a uni so maybe that is why. I have one stop doc appt on the way to the airport tomorrow to pull last drain, clip suture markers , and a shot of blood thinner for the long trek home. If you want any details panda, give me a week or so to get settled at home then PM me and ask away!







  • Catie2013
    Catie2013 Member Posts: 1,023
    edited December 2012

    I am actually getting excited for my stage 1b and then my stage two, didn't think I'd get here mentally but so glad to ven think about it. I know everything happens for a reason, so figure this is the way it's supposed to go for me. The whole reason I didn't want implants, I'm that 1or 4% that things go haywire, I'm used to it so pretty much go with the flow.



    When I do go back again I'm not sure I will qualify for the Hope Lodge so will most likely do the VRBO thing, 5 minutes from the hospital sounds fantastic, too. Are you there alone or with a caregiver? The driving part would be hairy without a caregiver. I also plan on being there a month but hope I can do off season for a better rate.



    I am very pleased with the Drs. Fantastic service and care. Did you have the super mattress at East Cooper?



    Happy 4th of July



    Catie

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited December 2012

    The magic mattress is the most comfortable way to go for SGAP. I was hospitalized 3 times (not normal by any means, had a gravity problem and needed to go back for closing wound on donor site, too much fluid in my body) . Should not be an issue, so don't worry about that. But I say this because I had the mattress all three times and it makes laying in the hospital very pleasant.



    The staff at the hospital is so great, they knew me when I came back. Dr Baron did my double mastectomies, he is terrific and his credentials fantastic. This is my second go round with breast cancer, so if I was doing the big mx to prevent a 3rd, I wanted the best to take the old girls off. I feel he is the best.



    Dr. Kline was my PS, assisted by Dr Craigie. I can't say enough good things about them. I had a small vein issue on my new cancer side (go figure that the side that would be best is the old cancer radiated side but had good big veins). The surgery was longer than usual because of the small veins on the left and a few days later they had to go in and remove the left breast, extending my hospital stay to over a week.



    I got in at Hope Lodge (Also a Godsend) so went back to Hope Lodge and started recouping in SC. Loved the idea that I could go back to the Dr twice a week and if any problem arose they were as close as the phone. Hope Lodge in of itself was a great place to be, every time I started to feel sorry for myself, I'd look at people who had it much worse than me. Also gave me plenty of people to interact with as well as my caregiver to interact or just go to a different room instead of watching me sleep.



    I started my journey to SC on the 23rdnof April, surgery on the 25th. I can honestly say its like giving birth. You forget the pain or discomfort or angst and remember the promise of a new girl (or girls)(smile) . The meds they give you are more than adequate to make you comfortable and get to the healing place.



    Hope this helps??



    Catie

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited July 2012

    Cascaded, I thought I'd freak being home and no Dr visits in case something went haywire, but it is so goooooooood to be home! And they are available by phone and email. I email a photo of my wound to them on Sundays just to give me peace of mind.



    Glad you are on your way. Tell me how the flight goes, I'm only 6 hours away but might fly next time.



    Catie

  • cascader
    cascader Member Posts: 599
    edited July 2012

    Hi ladies, if you have an extended stay( month) at Sandoiper they have a car service that will take you to your doc appts, pharmacy etc. , if u are without a caregiver. I would not have wanted to drive , tho very easy to find your way around here, except for the nonstop road construction.

    The price is right at this place, dont think rates are seasonal here . Nothing special, but really perfect for what I needed. A couple of restaurants on the corner to walk to including Charleston cafe which had a great breakfast . Ok I am off to the beach for the last time. . And yes, I cannot believe I am saying this, but am excited for round 2!!

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited July 2012

    Did you give the VRBO number for the place you stayed at? Would be great for my upcoming whenever that will be.

  • GointoCarolina
    GointoCarolina Member Posts: 753
    edited July 2012

    cascader, you know I will have plenty of questions for you....but I will give you a chance to get settled in at home before I bombard you!You can PM me when you are ready.I am glad you are looking forward to Stage 2,means you are feeling pretty good.I do want to ask,how long before you were allowed to stay alone?And are you flying home alone? That is great info about the car service,the cost of taxis is outrageous. Caitie,did you plan to stay for a month or was it because you had complications? I am thinking it sounds like a good idea to stay a bit longer,so I may try to work that out.And one more question,how long did you have hip drains?

  • Bogie
    Bogie Member Posts: 286
    edited July 2012

    For those of you from Chicago who went to Dr. Massey, wondering if anyone saw Dr. Song. My insurance would only cover Univ of Chi and Dr. Massey was not covered. I would love to hear your experience with tram flap or diep flap. I have tissue expanders in that have failed twice, I am done. I then went for another opinion and he wants to take abdominal tissue. I'm scared to death...please reassure me!



    I will also be in Charleston in a few weeks, hotel recommendations near James island or not to far from there..



    Thank you brave sisters!

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited July 2012

    Still have hip drains but probably only bc of complications. I only planned on about 7 to 10 days but complications made me stay. And so glad I was able to. I felt secure knowing the dr was only a short phone call away. Next time I'll rent for a month and wing it witha supplemental hotel if need be. Hoping won't have complications like before. A fluke.



    I had 4 caregivers plus my hubby a couple times. But it all worked out.



    How long do we wear the hospital bra???



    Happy 4th

  • cascader
    cascader Member Posts: 599
    edited July 2012

    Ughg, still traveling going on 13 hrs now. One more flight then a 2hr drive. Cannot wait to sleep in my own bed! Ended up getting a wheelchair and so glad I did , I am sore. I got my hip drain removed this morn 3 1/2 weeks, so I am officially drain free! Happy that I did not have to travel with them. Panda, I would not have wanted to be alone the first 10 days or so, I was getting around fine but was a little shaky showering and it was nice to have the help with meals, laundry etc. I was alone for 5 days after that and managed well, but a little stir crazy.

    Gma10, dr Kline had me stop wearing my bra because of irritated radiated skin so I think it is different for everyone. I will cOntinue to go braless until stage 2 , unless of course the outfit requires one. I am a B cup tho, so it is a little easier. Hoping my recon side will drop a little. Well, just one more hour to wait for this last flight , makes me rethink living where I do! Good night all!

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited July 2012

    Cacader-

    Glad to hear you are drain free, and almost home!

    I'm curious that you mentioned that your radiated skin is irritated?  This is probably a stupid question, but didn't you have your radiated skin/breast removed and replaced with flaps?

  • AnneW
    AnneW Member Posts: 4,050
    edited July 2012

    Bogie, I'm not from Chicago, but I'm sure jeskachi will chime in here soon. Please don't do a tram flap. Hold out for fat transfer, not muscle. I've seen so many women now 5-10 years out of tram, and they have no belly support so their backs are miserable. I'm trying to help them through Pilates, but it's a tough go.

    Do your homework about the two procedures. Talk, see pictures, find out about complications, early and late. And travel if you think that's right for you. Dr. Marga isn't in network for much of anyone. But if your out of network is doable, then use her. It will mean a trip to NOLA usually. She doesn't do Stage 1 in Chicago.

    Best of luck. I know this is a daunting thought. Give her a call or see when she's coming for another symposium. Check her wbsite www.drmarga.com.

  • cascader
    cascader Member Posts: 599
    edited July 2012

    Yay, finally home and wonderful to sleep in my own bed again. Came home to lots of planted pots of beautiful flowers on my deck and by my front door. I have the best friends ever!

    Pinkheart, no stupid questions here, anything goes. You are correct that most of the radiated skin was replaced by a flap ( I am a uni) but I have always had redness and sensitivity below the breast, kind of where a bra band would be. It seems to not have liked this additional trauma so is a little cause for concern. Dr Kline has suggested that I may benefit from hyperbaric oxygen treatments. He believes that it would really improve my stage 2 results. I will look into this and decide if it is something I should do.

    Question: can they make me a little bigger/ fuller with fat grafting at stage 2 or is it mainly just reshaping?

  • Bogie
    Bogie Member Posts: 286
    edited July 2012

    Anne, when you say fat grafting is that the Diep?



    I had a consult with Dr. Song out of university of Chicago he does 3 per week and 700 total. I do have some truncal lymphadema so I'm thinking if this will an issue. So much to research. Thank you...any abdominal donor site scares me!

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