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Old 10-18-2007, 11:30 AM   #43
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Talking Back to the nitty gritty

OK - here is where I had trouble with the study Marcia posted and the NCCN's guidelines NOT meshing. The study is from 1999 and the referenced guidelines are from 2000.

Here is the study's conclusion:
In conclusion, tumor markers are useful tools for the early diagnosis of metastases, being the first sign of recurrence in 69.5% of patients with relapse (76.3% in patients with metastases).

Did not anyone on the guidelines committee at the NCCN READ that study?? Here is where I get to say DUH! Do these numbers not have any meaning in forming GUIDELINES for taking markers?

My diagnosis was in 2000 - AFTER the study was published. My med onc is highly informed and told me then he would be looking at tumor markers since I had an aggressive form of the disease. I was fine with that, as I already had friends who were then in stage IV and knew I was a high risk Stage II patient. I learned early on to look the beast in the eye (with little or no support, I might add).

Maybe one study was not enough for the NCCN to change a guideline, but it is useful if our doctors are aware of the outcomes of these studies and apply the theories of the STUDIES rather than any "one size fits all" guideline.

Just as we are WAY past the "give everyone with BC the same scorched earth drugs," any thoughtful oncologist is WAY past using the same national guidelines for ALL his patients. Fortunately for me, my onc was THINKING of me as an individual patient in 2000, rather than just another hash mark in a statistic.

The BENEFIT to me is that I am alive to be responding to this thread. As well as one more "hash mark" to the good of early surveillance.
__________________
"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.
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