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Andrea Barnett Budin · 10-17-2007, 03:57 PM

Hi Pink!

Good question. Here's my experience. I have never had a PET. My oncs said it wasn't necessary for me. I have CT scans (chest/abd/pelv) w and w/o contrast. Began ev 8 wks. After a yr, moved to ev 3 mnths. Begged for ev 4 mnths (as I get diarrhea for 3 days after scans from the drink), and they reluctantly agreed. Now I have been graduated to ev 6 mnths! Wow! This is all AFTER MET. After initial dx I was told to do nothing. I wasn't comfortable w/that, but that was the standard protocol as of '95. Maybe still...

Am going for a brain MRI tmrrw. Any prayers are welcome... I'm scheduled at 8:50AM (EST) if you happen to have a free moment. I am feeling good that my brain is normal. Well, normalish... I don't believe I have ever been *normal*. Brain -- different body part. W and w/o contrast. Last yr insur co wouldn't approve with. Said IF they see something suspicious then they will cover my having ANOTHER MRI *WITH* contrast. Report came back, no evidence of met disease, BUT it is very difficult to see anything without contrast. Don't you just love that? My onc said to just let it go... This yr -- approved. Diff day, diff numbskull on the other end. Sorry. Don't mean to be disrespectful. Some are intelligent after all. But they are clerks of a sort, not medical professionals making decisions for me. Making $$$$$ financial decisions to save as much $$$$$ as possible. That's their business. Not a good system.

Have had bone scan. Would rather have MRI of breast vs mammog (even digital). Would rather have sono w/mammog but they only do that if they find something suspicious most places I know.

When Paul was collapsing and passing out this past summer they did CT brain scan first (less $$$). Then, unsatisfied, did brain MRI, for more definitive answers.

My understanding of a PET is that it is more definitive. Hope this is helpful to your question...

Andi

10-17-2007, 03:57 PM	#2
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	Testing... 1, 2, 3, 4.... Hi Pink! Good question. Here's my experience. I have never had a PET. My oncs said it wasn't necessary for me. I have CT scans (chest/abd/pelv) w and w/o contrast. Began ev 8 wks. After a yr, moved to ev 3 mnths. Begged for ev 4 mnths (as I get diarrhea for 3 days after scans from the drink), and they reluctantly agreed. Now I have been graduated to ev 6 mnths! Wow! This is all AFTER MET. After initial dx I was told to do nothing. I wasn't comfortable w/that, but that was the standard protocol as of '95. Maybe still... Am going for a brain MRI tmrrw. Any prayers are welcome... I'm scheduled at 8:50AM (EST) if you happen to have a free moment. I am feeling good that my brain is normal. Well, normalish... I don't believe I have ever been normal. Brain -- different body part. W and w/o contrast. Last yr insur co wouldn't approve with. Said IF they see something suspicious then they will cover my having ANOTHER MRI WITH contrast. Report came back, no evidence of met disease, BUT it is very difficult to see anything without contrast. Don't you just love that? My onc said to just let it go... This yr -- approved. Diff day, diff numbskull on the other end. Sorry. Don't mean to be disrespectful. Some are intelligent after all. But they are clerks of a sort, not medical professionals making decisions for me. Making $$$$$ financial decisions to save as much $$$$$ as possible. That's their business. Not a good system. Have had bone scan. Would rather have MRI of breast vs mammog (even digital). Would rather have sono w/mammog but they only do that if they find something suspicious most places I know. When Paul was collapsing and passing out this past summer they did CT brain scan first (less $$$). Then, unsatisfied, did brain MRI, for more definitive answers. My understanding of a PET is that it is more definitive. Hope this is helpful to your question... 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...