HER2 Support Group Forums - View Single Post - No more visits to Onc- is this right?

Andrea Barnett Budin · 09-13-2012, 10:52 AM

I thoroughly agree with Dr. Flori! I saw my onc ev 3 mnths and finally graduated to ev 6 mnths. STILL -- I had comprehensive bld work done ev 3 mnths until, practically forever! That is how I (yes "I") caught my metastasis. My liver enzymes were slightly elevated. Nothing to worry about, my oncs said. 3 mnths later, same dialogue. What could be causing that? Could be from anything, from the statin you take for example. I wouldn't worry about it, I was told, it was very, very slightly elevated. 3 mnths later -- same scene.

I asked for a sono. Which they decided could be substantiated (to the insur co). Which led to the CT, which led to the biopsy. Tumors throughout my liver. Yes, I felt fine. No symptoms but for my very very slightly elevated liver enzymes. Red flag!

We need to live our lives joyfully and with positivity, but it just makes sense to keep an eye out...

Plus, you need to feel free to actually have a conversation with your docs, to feel they are listening, hearing you, responding with thoughtfulness. When you feel rushed, things slide and little things get missed. Oncology is about details, as I see it. Heck, Life is about the details!

Andi

09-13-2012, 10:52 AM	#7
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	Emma emma... I thoroughly agree with Dr. Flori! I saw my onc ev 3 mnths and finally graduated to ev 6 mnths. STILL -- I had comprehensive bld work done ev 3 mnths until, practically forever! That is how I (yes "I") caught my metastasis. My liver enzymes were slightly elevated. Nothing to worry about, my oncs said. 3 mnths later, same dialogue. What could be causing that? Could be from anything, from the statin you take for example. I wouldn't worry about it, I was told, it was very, very slightly elevated. 3 mnths later -- same scene. I asked for a sono. Which they decided could be substantiated (to the insur co). Which led to the CT, which led to the biopsy. Tumors throughout my liver. Yes, I felt fine. No symptoms but for my very very slightly elevated liver enzymes. Red flag! We need to live our lives joyfully and with positivity, but it just makes sense to keep an eye out... Plus, you need to feel free to actually have a conversation with your docs, to feel they are listening, hearing you, responding with thoughtfulness. When you feel rushed, things slide and little things get missed. Oncology is about details, as I see it. Heck, Life is about the details! 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...