HER2 Support Group Forums - View Single Post

Andrea Barnett Budin · 10-31-2015, 04:26 PM

That's unfortunate. Guess I'm lucky that my constant queries, which I started out (in '95 and '98) apologizing for but marched forward nicely anyway -- I was told that I was doing just what I should be doing. Asking questions. I had my lists with me.

Here, if I get a doc who says I don't need to know that, I am gone. That's the last time I go to him or her. Doesn't happen often at all, but it's a deal breaker.

I've been collecting my every report (blood, CT, whatever, including from my 2013 surgery was so in depth I was blown away) for 20 yrs. I have folders full.

It was ME who discovered my metastasis in '98. I compared my bld results ea x to the last and the one before that.

I noted a rising of my liver enzymes. Doc said not to worry. 3 mnths later, same discussion. What could be causing that? Anything. Your cholesterol medication. It's a very slight rise. But I was consistent in all my #s over the yrs and this was odd.

I asked for an ultrasound. Doc agreed he could ask for it based on the information (insurance companies are so fussy). The sonogram led to a CT scan cause they couldn't be certain of what they were looking at. Right. They KNEW. The CT scan led to a liver biopsy -- which was HER2+ bc throughout the liver!

My tumor markers were still normal. Didn't rise for mnths after. I caught it right off but it took 6 mnths to get any action, and that was b/c I asked for it. It just came out of my mouth!

Nurses are always telling me, Don't apologize, it's good that you ask. Mistakes happen. And they do. People are human. We are not perfect. Errors occur all the time. We must be proactive and watch out for ourselves, Juls, and all who are reading this. Please. You owe that to yourself.

Sending with love,
Andi

10-31-2015, 04:26 PM	#23
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	Re: The power of words That's unfortunate. Guess I'm lucky that my constant queries, which I started out (in '95 and '98) apologizing for but marched forward nicely anyway -- I was told that I was doing just what I should be doing. Asking questions. I had my lists with me. Here, if I get a doc who says I don't need to know that, I am gone. That's the last time I go to him or her. Doesn't happen often at all, but it's a deal breaker. I've been collecting my every report (blood, CT, whatever, including from my 2013 surgery was so in depth I was blown away) for 20 yrs. I have folders full. It was ME who discovered my metastasis in '98. I compared my bld results ea x to the last and the one before that. I noted a rising of my liver enzymes. Doc said not to worry. 3 mnths later, same discussion. What could be causing that? Anything. Your cholesterol medication. It's a very slight rise. But I was consistent in all my #s over the yrs and this was odd. I asked for an ultrasound. Doc agreed he could ask for it based on the information (insurance companies are so fussy). The sonogram led to a CT scan cause they couldn't be certain of what they were looking at. Right. They KNEW. The CT scan led to a liver biopsy -- which was HER2+ bc throughout the liver! My tumor markers were still normal. Didn't rise for mnths after. I caught it right off but it took 6 mnths to get any action, and that was b/c I asked for it. It just came out of my mouth! Nurses are always telling me, Don't apologize, it's good that you ask. Mistakes happen. And they do. People are human. We are not perfect. Errors occur all the time. We must be proactive and watch out for ourselves, Juls, and all who are reading this. Please. You owe that to yourself. Sending 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...