NOLA in September?
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Betsy, I might have missed the answer, but if you do need a mini-flap (fingers crossed you don't), where will he get it from? Is it a similar procedure but just smaller flap? Let me know when you have your consult - we may go down for a holiday in October. Never thought I would love NOLA so much! And for me, it's not even about partying!
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I am trying to go down the weekend of the Breastoration fundraiser and have my consult that Monday, but don't know the date yet...
And about where to get this flap (if need be) is a great question. They assure me there is always a place, but I fear it is latiismus or thigh (of which I don't have a lot of fat anymore (thanks to lipo).. but I do have lat fat and upper hip fat, so maybe there?? That is why I am consulting.. Perhaps a good amount of fat grafting would do it... ?
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Hi Ladies,
Just finished my last AC treatment today. WOOHOO!! I wore my green undies and my lucky frog necklace.
I couldn't do it last Wednesday because I had bronchitis and was running a temp.
Now, on to Taxol for 12 weeks + Herceptin for a year.
How many of you experienced neuropathy on Taxol? I am just curious. I love to knit and would hate for it to be permanent and impede my knitting.
E--I had a double mastecomy and reconstruction in February of this year, then had to go back to NOLA in March because I had open sores on each breast (not common, but it does happen). Then we waited four weeks for that to heal before I began chemo. I will also need to do radiation therapy.
Hope everyone is doing well!
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Caitlin- Congrats! Step by step. BTW husband and I will be in Appleton for an ultimate frisby tournament this weekend.
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Caitlin, I had some neuropathy in my feet but not my hands. It disappeared sometime after treatment, but I can't remember when. So glad you are done with AC!! BTW, my period started coming back last month, so 7 months after chemo.
I graduated from physical therapy today! I did get some trigger injections in some stubborn muscles that loosened me up really well. I got to take a look at my X-rays from a year ago when I first started. I could see how my ribs were twisted, lower back was swayed, and parts of spine were tilted/curved. This had nothing to do with BC treatment, but I did get started after mastectomy caused me pain. I feel like a new woman! my posture is wonderful now and I'm quite flexible.0 -
I had a bilateral MRI today (my request to monitor things) and Dr Stolier has already called to tell me everything looks normal!!!! Yay!!!
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Hallelujah Betsy! (again) (c:
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Great news, Betsy
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Insurance denied the testing I was to have in Nola as well as the one here. Gearing up for a fight despite that I am exhausted. Anyone know a goo attorney that is dying to work pro bono???
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That would be "good" attorney!
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What was the testing for?? If I may ask.
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Betsy -- great news on the MRI. I'm finishing up Herceptin in 5 weeks, and get a PET scan in 3 weeks, but I don't know what followup will be after that. After recon, do they do the MRI differently? For my initial diagnostic MRI last year, it was face down, breasts through the table, stabilized with plastic panels. Do you go in lying face up now? I didn't know I was claustrophobic but nearly lost it in that machine -- had to come out, get composed, and go back in again. Next time -- Ativan!
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It was face down, same as the one I had before any surgery... I did talk for a bit with the radiologist to explain what had changed since then.. and she was a little worried about fat necrosis lighting up the MRI.. she said that she might have to give me a mammo just to determine what is fat necrosis and compare, but apparently it was not necessary. I did tell her to look at the skin, chest wall and nodes and everything else is fat. She also wanted to know which was my hip and which was my ab... not sure if they look different.
Most doctors told me that all I should get are exams, but that didn't sit well with me, and the RO I didn't hire told me I should get MRIs... after I turned down radiation and went with MX instead.
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Anybody hear from GMP300?
May 16 - GMP300 - Lat Flap, staying at Hope Lodge.
May 18 - Besa - 2B revision at SCSH
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GMP posted yesterday I think saying she was getting hip flaps after her consult with Dr D.
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GMP had her surgery today. I haven't heard from her. I know her mom is with her. I have her number but don't want to disturb her today. Hopefully she'll post something tomorrow! I THINK she actually ended up with a hip flap but I'm on drugs so I may be imagining things.
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Betsy, you bring up a good point. I will want to talk to the radiologist before I have my MRI (which will not be until September). Usually I just see the technician, and then get the results from my doctor. But I guess I should warn the radiologist that things will look a tad different this time around . . .
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Betsy, do you know if they could see your necrosis? I think it's great Dr Stolier called you so quickly. Love him! You must feel some relief getting that concern off your mind. Interestingly enough I do not feel compelled to request an MRI. Maybe because I'm sick of medical appointments??!
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Had my friend not been diagnosed with a recurrance, I may have let it go for a while before making the request, but I just NEEDED it. And no, they didn't tell me, but I assume Dr Stolier will have the report, so I may ask him... the report also went to my local BS and MO... I can't wait for that conversation.. he will feel I went behind his back I am sure. He is a wee bit arrogant.
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Betsy - it was for a lymphoscintography to check the flow prior to deciding on surgery... But insurance has just skipped ahead and basically said They will not pay for surgery, so they are not going to pay to even see if I am a good candidate or not. I will be fighting it... But I don't know how much fight I have left in me. I have been dealing with these same people for the last 3 years and I have had to fight them on nearly everything.
Even this feisty gal gets tired after a while. Anyway, my medical onc who was on board has basically abandoned ship, saying there is nothing more he can do (I think he maybe could help more, but does not want to as that would take a lot of energy!) - and so I am left alone to fight these guys. i only get two shots at appeals, so right now I am gathering information. And I don't sleep as it is!!! Grrrrrrrr. My husband said to call the hospital in nola and see if I can work out a cash pay. So, I guess I will try that too. I sometimes wonder why we all have insurance. I just read an article that talked about what a mess it is... more so since the reform laws were passed and how it is projected to get much, much worse. I do know with our insurance, having the HSA has significantly decreased the amounts going into the insurance pool (they are self funded) and so they have really tightened their reins on what they are willing to preauthorize. I had a feeling things would get nuts and am now SO very glad I pushed for my reconstruction when I did. At least there is that silver lining in there!0 -
You know.. I have great insurance and they have paid for everything, but I know that can change at any point, and was a determining factor for me when choosing to go with BMX and recon over just radiation... My BS had said all along if I later chose to have the MX, I could, but a little voice in my head said "what if I no longer have NOLA coverage." As it is, I am going back to NOLA in 2013, and am assuming my coverage will remain the same as it is now... bad to assume, but I can't make all of my decisions based on insurance. I wish you luck in collecting info and fighting the insurance company... It does seem a pro bono lawyer would be helpful to have. Or maybe a more sympathetic oncologist. Is there nothing the NOLA docs can do to submit info for you?? Who would be performing this test? Maybe they can right on your behalf?
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Great news, Betsy!! Know that feeling of relief!!
Nordy -- draw as much strength as you can from all of us. My insurance company is nickel-diming the Center and have flat out refused to pay for some things (Assistant Surgeon). Cappy Taylor sounds like she positively LOVES a good insurance fight! I get scared when I get a copy of the bills from the Center with the statements, but so far I owe $0. The Center is continuing to work with the insurance company and they seem quite matter-of-fact about it all. Now I need to see if 2b will be covered at all. Want to see the end of this journey, soon.
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One drain gone and one to go! I tried to stop taking the pain meds yesterday but turned out to be too soon, but otherwise it seems to be going well. I managed almost two hours of band practice last night before I faded out. I think I'll be fine to play a show a week from Sunday.
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Just returned from San Antonio this week so I had not read this thread in over a week. It took a lot of reading to catch up!
Chelle, my tummy is also a little messed up from my oopherectomy. I have what I call a rabbit's foot on my left side. Probably only I notice it but it used to be flat! So, would be nice to fix that eventually. I am working right up until my surgery date. I am getting nervous and am thankful to have work to take my mind off of it but hope that I will have enough time to get ready!
Besa, will be thinking of you tomorrow! Hope everything goes great!
Betsy, Yeah on the clean MRI!
Caitlin - Congrats on finishing the AC treatment. I experienced some neuropathy in the ends of my fingers and toes during Taxol treatment. It didn't stop me from doing anything and went away after treatment was finished. I noticed it most in the tips of my fingers when I was washing my hands - weird feeling.
I plan to purchase some smooth move tea to take to NOLA. I looked in the tea section at the grocery but didn't see any. Is it in the pharmacy section or do I need to special order it?
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Eva, sounds like you are getting better quickly. Good to hear!
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Hi ksue ... I just added you to the FB flap group.
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Woohoo! I just got a call from NOLA that my insurance is covering everything and I will only have to pay out-of-network out-of-pocket and the deductible! How can having a mastectomy & reconstruction feel like winning the lottery? I'm waiting to hear back to schedule, but they had room for me in early June as of yesterday. Yikes!
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lastar- Congratulations!
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Betsy what is the FB flap group? YAY on the MRI results
KSue, my last day is next Friday (week from tomorrow), but now I wish I would have taken a few extra days beforehand to get things in order. My work has noticed that I haven't been myself and have been on the phone a lot with NOLA, doctors here, LOA people etc. They said they understand & it's ok, I just feel bad. I just can't seem to concentrate when I am here. But, everything is in order with all my tests, gate passes for my son, wheelchair assistance for me.
Congrats lastar!!
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KSue, I found smooth move tea in the health foods aisle, near the supplements.
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