The National Comprehensive Cancer Network, a not-for-profit alliance including some of America’s most respected cancer centers – Sloan-Kettering, Dana-Farber, M.D. Anderson, Fred Hutchinson et. al. – offers a comprehensive guide to breast cancer treatment in downloadable, PDF form.
This incredibly detailed NCCN Guidelines for Patients™, which includes the most up-to-date information on surgery, chemo, radiation, and more, is available free to the public.
If you’re facing breast cancer treatment, will this guide help you make informed decisions?
If you’ve been through treatment, and are dealing with the lasting side effects we all encounter as a postscript to active treatment – will the NCCN guide help you cope?
The introduction to the guide states, “The National Comprehensive Cancer Network® (NCCN™) aims to provide… state-of-the-art cancer treatment information in easy-to-understand language. The NCCN Guidelines… are meant to help you when you talk with your doctor about treatment options that are best for you.”
Sounds good, right? Let’s take a closer look.
If you’re a woman newly diagnosed with breast cancer, your head is whirling. Not only are you struggling to absorb the fact that you have a potentially life-threatening disease; you’re trying to quickly get up to speed for your first appointment with your new cancer doctor.
What are the most important questions you should ask your oncologist? For that matter, what’s an oncologist? Even a glossary of common breast cancer terms would be useful at this point, wouldn’t it?
The NCCN guide offers advice on topics for your initial doctor visit, as well as a comprehensive cancer vocabulary list.
Both are fairly understandable; I’d prefer the language were more basic, and that the authors didn’t assume a certain level of understanding of the disease going in. But with a bit of study, you’ll find both of these sections useable.
The guide also breaks breast cancer down into specific types, stages, and other aspects of diagnosis, information you’ll find in your pathology report. The authors then take a decision-tree approach to treatment guidelines.
For example, if you have IDC and your tumor is smaller than 2cm and the cancer is hormone receptive and was found in 1-3 lymph nodes – what are the current guidelines for treatment?
Unfortunately, the guide again is a bit too technical; a bit too advanced for a woman just beginning to study cancer, and emotionally not equipped to put a lot of time and brainpower into absorbing new and somewhat complicated information.
Instead of clear guidance on using stage, hormone receptivity, and lymph node involvement to find treatment guidelines, the guide directs you to a page headed “Locoregional treatment of clinical stage I, IIA, or IIB disease or T3, N1, M0.”
If you’ve read and absorbed our Guide to Understanding Your Pathology Report, you could probably interpret this heading and find the information you’re looking for.
But for a cancer newbie? Not so easy.
Now, how about if you’re a survivor dealing with lasting side effects? Maybe you’re taking an aromatase inhibitor, and are experiencing hair loss; or you’re wondering about that pain in your ribs, 3 years after finishing radiation.
Should you download the NCCN guide?
If you want to double check your treatment regimen against current recommendations; or if you want to ensure that your oncologist is performing recommended follow-up tests, yes.
But for help dealing with the physical challenges of life after cancer treatment? Probably not.
I hand it to the authors of this guide: it’s jam-packed with information about breast cancer treatment. If and when you feel comfortable navigating language like this – “Complete planned chemotherapy regimen course if not completed preoperatively plus endocrine treatment if ER-positive and/or PR-positive (sequential chemotherapy followed by endocrine therapy)” – you’ll find the guide invaluable.
Until then – HealthCentral is here for you, plain and simple.
Published On: June 12, 2011