HER2 Support Group Forums - View Single Post - Routine marker testing and recurrence... worth it?

StephN · 10-28-2007, 02:06 PM

Hi everyone -
Should anyone wish to read further on this subject ...

In scanning once again this thread I saw the words "decision tree" someplace and now can't find it. These words triggered something deep in my memory and I went in search.

BTW - before I get into that, I want to mention that the NCCN is having a conference in La Jolla on Nov. 7:
http://www.fhcrc.org/patient/treatme...hKind=clinical

In which they will take up the subject of Guidelines Overview and Update on Quality Initiatives. That item is first on their agenda.

Ok, back to the original thought. When I was diagnosed I recall going over some treatment guidelines with one of my practicioners. Hunted in my folder of early info gathered at DX and found "Breast Cancer Treatment Guidelines for patients" Version III, June 2000, a 51 page booklet. A joint publication of the American Cancer Society and and the NCCN. There are chapters with Decision Trees for every stage of BC. AS well as "Follow-up/Recurrent Cancer."

Each passage which pertained to my original diagnosis is marked. When it came to the Decision Tree I found my stage, my pathology and the general treatment options (they were very general). In the "follow-up" section the info is scant and basic as to how many exams per year, length of time between mammograms and what to do if you are on Tamoxifen. Got much more specific as to work-up for a suspected recurrence, bone pains, etc.

These decision trees are basically OUTLINES of how to proceed for various types of BC. In the version I have there was nothing about what NOT to do for followup.

I know this is "old" information, but the fact that it was SO GENERAL is what I want to point out. At that time it seems to be left up to the oncologists to decide what was best for any particular patient, and may be why so many of our doctors STILL are not in lock step with whatever guidelines have come out in the meantime.

In explaining my particular "scary" diagnosis to my family and friends, I found this booklet very helpful as it was succinct and had easy to follow visuals for each stage. I had to flesh it out with specifics of my own treatments, but the "why" was there in black and white.

I don't find these trees on the NCCN site, but you have to be a member to have access to it all.

10-28-2007, 02:06 PM	#92
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Ah Ha - decision tree Hi everyone - Should anyone wish to read further on this subject ... In scanning once again this thread I saw the words "decision tree" someplace and now can't find it. These words triggered something deep in my memory and I went in search. BTW - before I get into that, I want to mention that the NCCN is having a conference in La Jolla on Nov. 7: http://www.fhcrc.org/patient/treatme...hKind=clinical In which they will take up the subject of Guidelines Overview and Update on Quality Initiatives. That item is first on their agenda. Ok, back to the original thought. When I was diagnosed I recall going over some treatment guidelines with one of my practicioners. Hunted in my folder of early info gathered at DX and found "Breast Cancer Treatment Guidelines for patients" Version III, June 2000, a 51 page booklet. A joint publication of the American Cancer Society and and the NCCN. There are chapters with Decision Trees for every stage of BC. AS well as "Follow-up/Recurrent Cancer." Each passage which pertained to my original diagnosis is marked. When it came to the Decision Tree I found my stage, my pathology and the general treatment options (they were very general). In the "follow-up" section the info is scant and basic as to how many exams per year, length of time between mammograms and what to do if you are on Tamoxifen. Got much more specific as to work-up for a suspected recurrence, bone pains, etc. These decision trees are basically OUTLINES of how to proceed for various types of BC. In the version I have there was nothing about what NOT to do for followup. I know this is "old" information, but the fact that it was SO GENERAL is what I want to point out. At that time it seems to be left up to the oncologists to decide what was best for any particular patient, and may be why so many of our doctors STILL are not in lock step with whatever guidelines have come out in the meantime. In explaining my particular "scary" diagnosis to my family and friends, I found this booklet very helpful as it was succinct and had easy to follow visuals for each stage. I had to flesh it out with specifics of my own treatments, but the "why" was there in black and white. I don't find these trees on the NCCN site, but you have to be a member to have access to it all. __________________ "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.