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Andrea Barnett Budin · 11-03-2007, 05:50 PM

Susan,

I am late to this thread, but so enraged I had to add my thoughts! What can I say? As a Stage 4 metastatic invasive lobular HER2+ bc person I didn't have to read my charts. I read the FACTS in books, on line, and freaked myself out. Then I gathered myself up, told my husband (the attorney/prove it in a scientific lab or don't bother me guy) he could read the books if he wanted, and I plopped them on his nightstand.

I began reading books on spirituality, gathering info on getting in touch with my spirit and consciously chose to IGNORE THE STATS. Boy did I have a poor prognosis. One onc told me that what I had was inoperable and incurable. He had known me 3 yrs and had 3 dghtrs and was obviously devastated by the news he had to relate. He said I would be on longterm chemotherapy for the rest of my life. That was August '98. Herceptin came out of clinical trials and was fast-tracked to be available to all met bc patients Sept. 28, 1998! I have been on it since '98 and I have defied the odds.

My post is not all about ME. It is about HOPE. About understanding that you are more than a statistic and you have a mind that can guide you through this ordeal and help you to survive and thrive.

Another onc parsed my *sentence* another way. Ok, he said. Inoperable. That's good. You'll do better without surgery. Because you'd still have to have chemotherapy and this way you'll be stronger to fight back. Incurable. Cancer is not yet curable. They're working on it. (He's in research 4 out of 5 days a wk.) But cancer can be controlled. It is a chronic condition. When you have a flare up we can treat it. When one thing doesn't work we can use a bunch of other drugs to knock it out and down. And as for you will be on longterm chemotherapy for the rest of your life -- don't think the worst. There are *kinder gentler* chemos out there. He didn't even mean Herceptin as at that time there was a LOTTERY SYSTEM to get it if you weren't in a clinical trial. Women who needed it and were given 3 mnths to live were all tossed in to a hat and if they WON that drawing -- they lived!

So I'm hoping, Susan that you will not take your onc's sadly antiquated view of HER2 and its one time terrible stats personally. You have the power to consciously choose to heal and be well and live a long, long time!

Sent with love,
Andi

11-03-2007, 05:50 PM	#33
Andrea Barnett Budin Senior Member Join Date: Oct 2005 Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW... Posts: 1,904	You Are Not A Statistic! Susan, I am late to this thread, but so enraged I had to add my thoughts! What can I say? As a Stage 4 metastatic invasive lobular HER2+ bc person I didn't have to read my charts. I read the FACTS in books, on line, and freaked myself out. Then I gathered myself up, told my husband (the attorney/prove it in a scientific lab or don't bother me guy) he could read the books if he wanted, and I plopped them on his nightstand. I began reading books on spirituality, gathering info on getting in touch with my spirit and consciously chose to IGNORE THE STATS. Boy did I have a poor prognosis. One onc told me that what I had was inoperable and incurable. He had known me 3 yrs and had 3 dghtrs and was obviously devastated by the news he had to relate. He said I would be on longterm chemotherapy for the rest of my life. That was August '98. Herceptin came out of clinical trials and was fast-tracked to be available to all met bc patients Sept. 28, 1998! I have been on it since '98 and I have defied the odds. My post is not all about ME. It is about HOPE. About understanding that you are more than a statistic and you have a mind that can guide you through this ordeal and help you to survive and thrive. Another onc parsed my sentence another way. Ok, he said. Inoperable. That's good. You'll do better without surgery. Because you'd still have to have chemotherapy and this way you'll be stronger to fight back. Incurable. Cancer is not yet curable. They're working on it. (He's in research 4 out of 5 days a wk.) But cancer can be controlled. It is a chronic condition. When you have a flare up we can treat it. When one thing doesn't work we can use a bunch of other drugs to knock it out and down. And as for you will be on longterm chemotherapy for the rest of your life -- don't think the worst. There are kinder gentler chemos out there. He didn't even mean Herceptin as at that time there was a LOTTERY SYSTEM to get it if you weren't in a clinical trial. Women who needed it and were given 3 mnths to live were all tossed in to a hat and if they WON that drawing -- they lived! So I'm hoping, Susan that you will not take your onc's sadly antiquated view of HER2 and its one time terrible stats personally. You have the power to consciously choose to heal and be well and live a long, long time! Sent with love, Andi __________________ Andi BB '95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive... '98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!) + good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either... Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...