SURVIVAL ODDS IMPROVED AFTER 2 TO 3 YEARS MARK??? |
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cgraves3rv 
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Joined: Jan 05 2008 Status: Offline Points: 55 |
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 Posted: Apr 09 2009 at 11:37am |
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Hi Tia,
I don't know your history but you mentioned you are having a problem getting approval for reconstruction. If you had a mastectomy, it's a federal law that your insurance company must approve your reconstruction. They can't quibble about it. If it's some other type of reconstruction, then I don't know... Good luck, Connie |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Apr 09 2009 at 11:47am |
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By any chance since it it is law do they pay 100%?
 I would love to get recon but can't afford the co-pays.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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cgraves3rv
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Posted: Apr 09 2009 at 12:19pm |
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I think you are always stuck with co-pays unless you cap out. I have been somewhat lucky in a bad way. DH is a 100% disabled vet so he gets all of his medical through VA. I get my medical through ChampVA. I have a low annual cap so since I started this nasty little cancer journey I have capped out pretty quickly each year. Especially since everything is so expensive. Check with American Cancer Society to see if they have any grants for something like reconstruction. Maybe some of the other groups do also. Also talk to your hospital to see if they would accept what insurance would pay. Some will do that. And also your doctor. Maybe someone else has an idea? Good luck and thank you for all your good wishes. Connie
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Apr 09 2009 at 12:48pm |
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Well you have some good ideas there, thanks! Yes I think they even raised our cap this year. Good grief you don't want so much to go on but once you get capped out you need to do whatever you need done then! |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Diamond2Wheels
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Joined: Nov 13 2008 Location: NY Status: Offline Points: 98 |
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Posted: Aug 05 2009 at 4:03am |
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Connie, Sharon and Nancy,
Thanks for the 411...its all good!
As far as the mets...well, I can't make a year without having it return. I've had 5 operations...the first doctor (that is what she calls herself) had given me a lumpectomy with lymphnode removal and LEFT ME OPEN! Yes, she did not sew me shut! HOW I FOUND OUT>>>I had phoned her to tell her that I am allergic to adhesive and my skin was bubbling underneath the clear tape.
She told me to get into the shower and remove it as gently as possible, (which I did just that)...and to my horrifying suprise looked down to see my breast had a hole in it and I was looking at the inside flesh of my breast!
I was mortified...and yes, I had a reoccurance immediately! (lawsuit #1) She was also cold to me when I had 104 temperature and asked me to come in at the END of her day! and if you know Long Island's 495 Expressway traffic....its like a parking lot...this isn't a good time to drive, period! I did drive myself...with quite a few stops along the way to pass out...sat in her waiting room asleep for hours and then they asked me to wake up and get n2 the room and put a gown on!
It took 4ever to walk...by hugging the walls to help me walk to the room, all the while her 'assistant' watched without helping me! and of course I couldn't change into a gown without passing out on a cold hard floor, so I didn't...
When she arrived in the room... she rolled her eyes at me and asked me to inhale after inspecting my drain-she said oh 10 days is enough..."inhale" so she could remove the drain under my arm! I begged her not to...she insisted since she claimed I would get an infection..argued with her about how feeding tubes are in people with no problem...and since I was still draining lots of fluid to please let it stay 3 more days...needless to say, I ended up n the hospital for 7 days with an infection because of this and because she gave me the wrong antibiotics!! Uggh.
NOW...a little FYI
All the Oncs on Long Island...(and I interviewed alot)...all claim the chemo I was givin in NYC was so much and so harsh they are suprised I was still alive! -------- And yes, I am terrified of returning to that deadly poision!
Here is the clincher...AGAIN, I have a reoccurance in the breast...this time it hurts alot...and all the time...it even looks like it wants to come out of my skin! It is by the surgical site and a new one by my nipple...(which one doctor took a biopsy there when I told him it was the implant getting pressured from my tumor and not to biopsy it...he insisted...but used the SAME implement he used to biopsy my surgical site! ) I have terrible luck eh?
Hense... My insurance company will not allow me to have the doctor of MY choice...the two other doctors on their list - one says remove it totally without reconstruction but he warned me I would look totally abnormal since I would be MAMED FOR LIFE and that I should find a good JOB with BETTER INSURANCE!!!
The other doctor on their list...wants to do a latisimus dorsi flap although...looking at his book...uggh! I was HORRIFIED at his surgery! These poor women were mamed for life with scars beyond belief! Some of them the muscle that was moved to the breast, burst out of their skin!!! The breast reconstruction was up near their clavical bone! Now there is another man who never paid any attention to the female body!
So, yes, I am in a panic...tried fighting my insurance company without any yes answers...
In my search for a good surgeon...I did find a wonderful surgeon with hands of gold...they call him the Mistro...his speciality=he reconstructs ears and hands which is, I am told, one of the hardest reconstructions to do. I want him...my insurance company said NO to me!!! What can I do????
I'm in terrible pain and quite frieghtened at this interval of my cancer. My breast is tight and I get twinges of pain along my day. I'm afraid.
Connie look into a 'Supplemental Needs Trust' since you can not afford the co-pays. I am starting one since I can not afford the co-pays either! Apparently, it is a legal document to open an account that all your expenses are taken out of...including your insurance premiums, co-pays and general expenses ie...gas, food, rent/mortgage, car insurance and it deducts this from the 'cap' of other help you can get from the government..ie food stamps, medicade/medicare, rent payment help and a bevy of other things...I'm on Long Island and the Nassau/Suffolk Law Services Committee are helping me set this up. Hope it helps you as I know that awful feeling of expenses when you NEED to see a doctor!
Peace and Hugs of Love
Tia
PS Sorry, I haven't been online = I have moved my residence. I'm in a very amazing, peaceful chalet of a home in the woods donated by a biker friend-I live alone by the beach with song birds and sunshine!...the topper as of recent- I have just met a gentle natured man who is also a biker who has a nature of a Buddah and after an informal introduction from a breast cancer survivor, has turned n2 an angel in my life, who in his arms, lost his mother to cancer!...I am so fortunate to be blessed in my time of need. Namu Myoho Renge Kyo! I have never given up on God. Edited by Diamond2Wheels - Aug 05 2009 at 4:29am |
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Tia-dx 2/14/2006
5/4/2010-L Mastectomy & Pectoral muscle removed & lymph nodes - had Gemzar, A/C, Taxotere, Navelbine, Xeloda, Doxil On PARP clinical trial at moment. |
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ChrissieD
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Joined: Dec 30 2008 Location: United States Status: Offline Points: 131 |
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Posted: Aug 05 2009 at 4:26am |
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Tia,
I am so sorry you are having to go through all of this. Shame on the doctors and nurses who have not shown you compassion! Good golly that is terrible.
As mentioned in an earlier post, it is federal law that you can get reconstruction. My surgeon told me it doesn't matter when you have it either. I am contemplating having tattooing and he said I did not have to have it now, I could decide 5 years from now to do it and it would be covered from my bi-lateral.
If you are considering having any kind of flap procedure you MUST go to a microvascular surgeon who is an expert at the type of procedure you want. This is critical to reduce the liklihood of failure. I would venture to guess the really good ones have folks in their offices who are used to writing to insurance companies on behalf of patients. Find a doctor you like, whose work you like, and have them contact the insurance company. If you are not a candidate for expanders/implants then I would think they would be able to make the case for you. Also, keep in mind you have the breast tissue removed and do the reconstruction later. While not ideal to have multiple surgeries if that would help you to feel better that may be a way to go. I would also encourage you to find a breast surgeon who is kind and compassionate and who thinks you could have a good cosmetic outcome.
Best of luck to you.
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Diamond2Wheels
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Joined: Nov 13 2008 Location: NY Status: Offline Points: 98 |
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Posted: Aug 05 2009 at 4:56am |
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ChrissieD
That was a help...I will ask them for a MicroVascular Surgeon then! Maybe then it'll be put into a category that will help me feel safe in surgery. And yes, I know it might be best now to remove the breast before reconstructive surgery but...
how odd I will lQQk with a 34C/D cup and zero on the other side...I love my cleavage and just so attached to those two bumps and my stupendious nipples! I know it sounds silly, but I was always proud of my breasts!
The 411 was helpful. I will let you know what the outcome is! xoxo
Peace and Hugs of Love,
Tia
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Tia-dx 2/14/2006
5/4/2010-L Mastectomy & Pectoral muscle removed & lymph nodes - had Gemzar, A/C, Taxotere, Navelbine, Xeloda, Doxil On PARP clinical trial at moment. |
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Diamond2Wheels
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Posted: Aug 05 2009 at 5:03am |
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Donna
When you make your flight...include me.
I could go for a spa during my recovery as well...
but that doesn't get rid of my ( Y ) big bertha butt!
teeheeeee
Tia
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Tia-dx 2/14/2006
5/4/2010-L Mastectomy & Pectoral muscle removed & lymph nodes - had Gemzar, A/C, Taxotere, Navelbine, Xeloda, Doxil On PARP clinical trial at moment. |
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