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sunbearz View Drop Down
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    Posted: Nov 15 2008 at 6:46pm
 Hi everyone, Just found out my BC tissue was misdignosed 10 years ago.I was not triple neg ,But triple pos.5 years of the wrong Chemo.I have a great Dr who thought something was wrong and retested the tissue with another lab.
Cant tell you what this has done to me mentally.Im just spreading the word,that if something isnt working, get that second opinion or move to another lab.
 Jill
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2008 at 4:57am

Jill, I can see how you might have many, many mixed emotions.  I imagine this news is going to invoke confusion of this site, as well.  You were the exception that we all strived to be - a triple negative that was still here ten years after diagnosis, five years after mets.  So now, it looks like the reason for your long term survival is at least partly attributed to your wrong dx.

On the other hand, you've had so much chemo that you might have avoided and stayed stable on AI's.  So, try to look at the positive - you have all those other drugs available now, plus herceptin, and you can expect to live for a long, long time without chemo.  This is wonderful news.
Try not to  be angry about all the chemo you had and possibly didn't need.  No, I take it back.  I'd be pissed (but I'd still be relieved to be hormone positive).
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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sunbearz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2008 at 5:41am
 Thanks Brenda,I guess one way to look at it, is I was able to survive with the mets growing ,over all these years,.It didnt kill me yet.Hope its not too late.
  Jill
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2008 at 6:20am
No Jill it isn't too late! 
 
Thank you for warning the forum members and I can't even imagine what you are thinking or feeling right now but yes you are here and doing well, that is the main thing.
 
I wonder if this would fit into the thread we had recently regarding asking for the FISH test in the beginning?  Do you know if you had the FISH test done?
 
Big hug at ya,
Stage 2 2003
Stage 1 2007
BRCA 1+
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sunbearz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2008 at 1:24pm
 Pam, I dont know what FISH is.My world has been turned upside down.Would appreciate the info.
It just kills me to think any others who are having Chemo after Chemo and its just not working.Mistakes are made.This is a big one.Unbelievable.
Jill
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2008 at 1:42pm
Jill,
 
I would be pissed....really pissed. This is the hugest mistake ever, and for it to go on so long undetected is unforgiveable on the part of the medical profession. I have 3 links on the FISh test that Pam had posted. Sorry I can't read them to you, as I would imagine you probably cannot concentrate on anything at this point.
 
Here they are sweetie....maybe it will be a swim with the manatee in the not too distant future.Wink
 
Many many hugs and much love,
Nancy
 
 
 
 
 
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2008 at 1:59pm
Oh, Jill...another one of those moments where there are just no words!

I can't imagine.

Ditto Brenda's comment on how positive it must be that you now have tx available that had been ruled out before.

And, please consider yourself a lifetime honorary tn for the purpose of this board, don't abandon us! Check in often and let us know how everything is going.

Very best, Donna


Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07
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sunbearz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2008 at 4:23pm
 Pam,Donna, Nancy, thank you so much.I would be honored to be here.I lived the life, did the Chemos, and as I saw others getting better.I wasnt.
Believe me TNBC is my life.Thats all Ive ever known.It feels like a adoption thing. Ive been handed over to another side I know nothing about.
After 10 yrs ,I have to switch gears.How do you throw away the old Teddy bear you have hugged and cried with.Thats what you all are to me.
Im still in a fog.I thank you all so much for the support
   Jill
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Galina2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 23 2008 at 7:13am
Dear Jill. I have worked in "FISH" lab for a year, before going on to "greaner" pastures (how fool of me!). Simply said, it is a fabulous genetic testing, gives all sorts of diagnosis about the missing and dislocating genes, lenghth of "telomerase", the end part of the genes responsible for longetivity/health.
That's great they kept the tissue, so they could re-test! i always thought it is "better" to be ES/PR+ and be able to get tamoxifen. So GO GIRL!!! Tha't better than to be blind and stay the TNBC course!!!!
Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Nov 23 2008 at 7:27am
Throw that triple negative teddy bear into the fire with reckless abandon!

Go get a new "Whew Hoo for Healing" bear.

XOXO

Donna
Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Nov 26 2008 at 4:17pm
 Thanks guys,how thoughtful and caring all of you are.Im doing great except for all the side effects of all the Chemo Ive had.Will the Mets go away. I dont know.
Im still in a fog and dont trust any Lab test.I cant burn the Teddy Bear yet Donna, Not until Im sure no other TNBC lady doesnt have to go through this.I have a mission.
I have a attorney.Statue of limitation is 7 years.Im 10.Its going to be a battle.
Just want everyone to know- My Story.It could be yours.
Have a great Thanksgiving and I will keep you updated.
   Jill
 Thanksgiving%20Dinner%202%20 





Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
Back to Top
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Nov 26 2008 at 4:24pm
Hey there Jill,
 
I would think that the 7 years is from when you discovered that the lab was wrong!! Which is just a few weeks ago!!!
 
How the hell would you go after them if you didn't even know they did your tests wrong? I think that we have an attorney or two or three on the site here. Maybe they will chime in here? I think Nancy Jane is an attorney.
 
Good to hear from you sweetie, and do keep us updated. You too have a great Thanksgiving!
 
Where are you getting these cute emoticons? I loved the one you put on a post to Caryn.Wink
Love and hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 27 2008 at 2:15pm
Hi Jill, it is soo good to hear from you girl.Star
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Nov 28 2008 at 5:32pm
 Kisses Nancy, I hear you.Its a stupid Fl Statute. If I can find a loophole, I will.Gosh, I was just fighting to get through Chemos for others, now its a Law.Whatever the cause is, Ill do it.Im just one person this happened to,but Im hearing from others who have had the same diag and Chemos and are wondering like I did.Any help would be appreciated.
 Jill
Nancy,Smiley central.Its free but be carefull . You will get hooked.





Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
Back to Top
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Post Options Post Options   Thanks (0) Thanks(0)   Quote pinklemonade Quote  Post ReplyReply Direct Link To This Post Posted: Jan 19 2009 at 3:48am
I too had a lab mistake - a biopsy that came back B9 and then four months later it was positive for canSer and had grown into two large tumors (1.2c and 2.2c) and lymph node mets (11/19). It happens and it is a HUGE drag! I know how you are feeling AND it is obvious you are a fighter as you went so long without knowing. Good for you. And good for you that you are on the right track now!
Pink
dx 6/07, stage 1, T1, N0, ACx4,double masectomy, BRCA neg
dx 11/08, stage III, chest wall, 11/19 nodes +, radical left chest masectomy, C/Tx4, 30 rads
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sunbearz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2009 at 4:18pm
 Pink, It is sad to discover an error.And then to think was it an error or was the second test an error.Im just waiting , but am getting better.I will get an attorney.Just have to make sure Im up and ready for a fight and all the legal stuff.Im just thankful Im better.Hang in there.No matter what anyone goes through, its worth it.
Jill Thumbs%20Up 





Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
Back to Top
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