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.