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Andrea Barnett Budin · 01-06-2016, 02:13 PM

So, Juls, a biopsy would obviously be necessary. They can say possible disease, possible cancer, but they surely need to confirm their suspicions.

I was able to get 2nd and 3rd radiologists to view my ev 8 wk scans back in the day and #2 and #3 disagreed with #1 -- none of them knowing the others existed or what their reports said. #2 and #3 decided they weren't looking at tumors but the dead remains of tumors. So if you can, get additional input. Mine came with onc #2 and onc #3 each independently asking me to see my scans and let their radiologists view them.

When I had June 2015 scans radiologist's report said suspicious of carcinoid tumor, which had been suggested by the previous scan which they compared 6/15 to.

Turns out without surg, which I declined, they did special ocreotide scan which would determine if what they saw was carcinoid and I passed the 4 hrs of scanning w/flying colors. NOT carcinoid, which I agitated about for a full year, till I got an oncological surgeon on board (an hr away, but worth the trip cause he's the only one who knew about this test). I thought my wonderful onc who knows everything would know about such a thing, but it was beyond his scope apparently.

Did you have the bone scan? Did you have an xray? Did you meet with onc surgeon to check bone?

What tx are you now on? You mentioned Xeloda, Biphosonate (to be determined) and Herceptin by injection.

Are you a part of the team who decides what the biphosonate will be?

Is anyone on this board familiar with Herceptin by injection?

I haven't heard of that before.

Did they biopsy yet?

Juls, please fill us in when you can. We are all thinking of you and hoping for your roller coaster ride to come to a stop, with conclusions. So much on your plate. Don't panic yet. Go with the tests and all the input you can muster so make a sane plan.

Hugs,
Andi

01-06-2016, 02:13 PM	#14
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: Need input! So, Juls, a biopsy would obviously be necessary. They can say possible disease, possible cancer, but they surely need to confirm their suspicions. I was able to get 2nd and 3rd radiologists to view my ev 8 wk scans back in the day and #2 and #3 disagreed with #1 -- none of them knowing the others existed or what their reports said. #2 and #3 decided they weren't looking at tumors but the dead remains of tumors. So if you can, get additional input. Mine came with onc #2 and onc #3 each independently asking me to see my scans and let their radiologists view them. When I had June 2015 scans radiologist's report said suspicious of carcinoid tumor, which had been suggested by the previous scan which they compared 6/15 to. Turns out without surg, which I declined, they did special ocreotide scan which would determine if what they saw was carcinoid and I passed the 4 hrs of scanning w/flying colors. NOT carcinoid, which I agitated about for a full year, till I got an oncological surgeon on board (an hr away, but worth the trip cause he's the only one who knew about this test). I thought my wonderful onc who knows everything would know about such a thing, but it was beyond his scope apparently. Did you have the bone scan? Did you have an xray? Did you meet with onc surgeon to check bone? What tx are you now on? You mentioned Xeloda, Biphosonate (to be determined) and Herceptin by injection. Are you a part of the team who decides what the biphosonate will be? Is anyone on this board familiar with Herceptin by injection? I haven't heard of that before. Did they biopsy yet? Juls, please fill us in when you can. We are all thinking of you and hoping for your roller coaster ride to come to a stop, with conclusions. So much on your plate. Don't panic yet. Go with the tests and all the input you can muster so make a sane plan. Hugs, 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...