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Old 07-17-2010, 12:31 PM   #1
to_survivor
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Red face Question?? Recurrance of IBC

Was wondering if anyone can tell me what the likely hood of IBC coming back after 6 years? Mine was her2 strong and everything else negative.
I did chemo, mastectomy, radiation, and a year of herceptin. They just did a biopsy and I will not know until Wednesday.
I have not had much luck finding the recurrence rate. Any help would be greatly appreciated. Thanks, to_survivor
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Old 07-17-2010, 12:52 PM   #2
Midwest Alice
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Re: Question?? Recurrance of IBC

Great on your 6 years! I don't know the answer, but I remember reading something that if IBC doesn't come back in 5 or 6 years .....then it isn't coming back. I don't think they know for sure. Good luck on your biopsy, praying for a good report.
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
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Old 07-17-2010, 01:10 PM   #3
to_survivor
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Re: Question?? Recurrance of IBC

Alice,
Thank you for your kind words. We will see come Wednesday.
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Old 07-17-2010, 05:35 PM   #4
atee
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Re: Question?? Recurrance of IBC

I don't think there are any 'stats' on years out from IBC. But one thing is for sure. Six years ago they didn't have the knowledge or the IBC specific clinics and doctors that there are now. Houston, Philly, Boston and Seattle to pick from, plus the advantage today that your doctor has to confer with IBC specialist that were not around 6 years ago. I will light a candle that it's nothing, but know you have a ton more options now than then.
Let us know.....
Patti
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Old 07-18-2010, 08:20 AM   #5
to_survivor
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Re: Question?? Recurrance of IBC

Thanks so much Patti.
I will let you what I find out. I will check into the doctors. Take Care
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Old 07-18-2010, 10:37 AM   #6
atee
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Re: Question?? Recurrance of IBC

I just re-read my message which really didn't tell you squat. Sorry.

Boston/Dana Farber: Dr. Beth Overmoyer oversees the IBC clinic
Houston/MD Anderson: Dr. Tom Buchholz heads the clinic
PA/Fox Chase: Dr. Cristofanilli now in charge of his second clinic
Seattle/Seattle Cancer Care Alliance: Dr. Lupe Salazar (not IBC specific but soon we all hope.)

You might want to listen to some of our radio podcasts of what's going on the treatment and new science of IBC. You can find it on our Foundation website:
www.eraseibc.com

Patti Bradfield, President
The Inflammatory Breast Cancer Foundation
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