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StephN · 02-21-2007, 11:36 AM

This is why we love you Sherry - you have so much common sense!

I too can be on the confrontational side - gently, of course. But when I have a question, I ask it!

Getting the chart notes is the best way. Just have to point to that section and ask for a BETTER explanation. Like "is this a reason not to check for nodes in my clavicle area??"

Chelee, is there a clinic or hospital DIRECTOR who will take your case seriously, as you deserve? No "mushrooms" allowed here! No kidding - just get hold of the person who is the top over your med onc and ask for a meeting or phone conference. Fax the person the part in the notes you want to address, plus report that you have not had the kind of exams you KNOW are the norm for followup.

If you get NO satisfaction, tell them you will find treatment elsewhere.

P.S. Do you have a surgeon who is following your scar areas? Most good surgeons want to see you at least 2 or 3 times during the first year after your surgery.

02-21-2007, 11:36 AM	#4
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	This is why we love you Sherry - you have so much common sense! I too can be on the confrontational side - gently, of course. But when I have a question, I ask it! Getting the chart notes is the best way. Just have to point to that section and ask for a BETTER explanation. Like "is this a reason not to check for nodes in my clavicle area??" Chelee, is there a clinic or hospital DIRECTOR who will take your case seriously, as you deserve? No "mushrooms" allowed here! No kidding - just get hold of the person who is the top over your med onc and ask for a meeting or phone conference. Fax the person the part in the notes you want to address, plus report that you have not had the kind of exams you KNOW are the norm for followup. If you get NO satisfaction, tell them you will find treatment elsewhere. P.S. Do you have a surgeon who is following your scar areas? Most good surgeons want to see you at least 2 or 3 times during the first year after your surgery. __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.