Whether you've just been diagnosed or you're in the middle of an aggressive treatment, there's often a lot of confusion and uncertainty, and a lot to remember. Often you feel like you're playing your own treatment by ear, loyally doing the doctor's bidding at each appointment.

There's a way to eliminate some of that uncertainty.

In 1995, the National Comprehensive Cancer Network (NCCN) established diagnostic, treatment, and supportive care guidelines for the management of virtually every cancer. These guidelines, developed as algorithms, are used by oncologists at all 21 NCCN member institutions and their affiliates (see below); rigorously created and constantly updated, they provide a diagnostic and treatment roadmap for the doctors and health professionals treating their patients suffering from cancer.

While they're written for doctors, the rest of us do have access.

1 Go to this page at the National Comprehensive Cancer Network.

2 Scroll to the bottom. Under the header Accessing the NCCN Guidelines it says "When you visit this page of NCCN.org …" click on that hyperlink.

3 Read the user agreement, if you agree, click 'accept' and 'submit.'

4 On the page you go to, click on either 'Non-Hodgkin Lymphoma' or 'Hodgkin Disease/Lymphoma' and it'll open into a large PDF file, which you can download and save to your computer.

The NCCN's member institutions include most of the top cancer hospitals in the US:
- City of Hope Comprehensive Cancer Center, Los Angeles, CA
- Dana-Farber/Brigham and Women's Cancer Center | Massachusetts General Hospital Cancer Center, Boston, MA
- Duke Comprehensive Cancer Center, Durham, NC
- Fox Chase Cancer Center, Philadelphia, PA
- Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT
- Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, Seattle, WA
- The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD
- Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL
- Memorial Sloan-Kettering Cancer Center, New York, NY
- H. Lee Moffitt Cancer Center & Research Institute, Tampa, FL
- The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute, Columbus, OH
- Roswell Park Cancer Institute, Buffalo, NY
- Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, MO
- St. Jude Children's Research Hospital/University of Tennessee Cancer Institute, Memphis, TN
- Stanford Comprehensive Cancer Center, Stanford, CA
- University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL
- UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA
- University of Michigan Comprehensive Cancer Center, Ann Arbor, MI
- UNMC Eppley Cancer Center at The Nebraska Medical Center, Omaha, NE
- The University of Texas M. D. Anderson Cancer Center, Houston, TX
- Vanderbilt-Ingram Cancer Center, Nashville, TN

The Arizona Republic, among other outlets, is reporting on genetic research coming out of U.C. Berkeley and Phoenix-based Translational Genomics Research Institute.

The scientists claim they've found a gene variant that comes close to doubling the risk for developing follicular lymphoma (FL).

Published online in the science journal Nature Genetics, the conclusion was reached after examination of over 3,000 HIV-free DNA samples (since FL occurs in about one in ten HIV patients, future studies may involve HIV-positive patients) and looking for the single-letter difference among 3-billion based pairs of the human genome.

They found the mutation in the STG gene, also known as C6orf15.

What does this mean for people with FL right now? Not much. What does it mean for future generations? That their FL could be diagnosed earlier than it is now, and that certain drugs could be developed that could tackle the disease before it gets a chance to develop.

Either way, it's all a long ways off.

With their 2009 rankings coming out soon, here's US News & World Report's 2008 ranking of the best cancer hospitals in the US, which includes 170 hospitals nationwide, the top 20 of which are below:

1 University of Texas MD Anderson Cancer Center, Houston TX
2 Memorial Sloan-Kettering Cancer Center, New York NY
3 Johns Hopkins Hospital, Baltimore MD
4 Mayo Clinic, Rochester MN
5 Dana-Farber Cancer Institute, Boston MA
6 University of Washington Medical Center, Seattle WA
7 Massachusetts General Hospital, Boston MA
8 University of California, San Francisco Medical Center, San Francisco CA
9 Stanford Hospital and Clinics, Stanford CA
10 Ronald Reagan UCLA Medical Center , Los Angeles CA
11 Duke University Medical Center, Durham NC
12 Hospital of the University of Pennsylvania, Philadelphia PA
13 Cleveland Clinic, Cleveland OH
14 Vanderbilt University Medical Center, Nashville TN
15 Fox Chase Cancer Center, Philadelphia PA
16 H. Lee Moffitt Cancer Center and Research Institute, Tampa FL
17 University of Michigan Hospitals and Health Centers, Ann Arbor MI
18 University of Chicago Medical Center, Chicago IL
19 Ohio State University James Cancer Hospital, Columbus OH
20 University of Alabama Hospital at Birmingham, Birmingham AL

We've all seen the commercials for the Cancer Treatment Centers of America; not one of them—Eastern Regional Medical Center in in Philadelphia, PA; Midwestern Regional Medical Center in Zion, IL; Southwestern Regional Medical Center in Tulsa, OK; and Western Medical Center in
Goodyear, AZ—is even mentioned by US News & World Report.

I wonder why this is.

Mike Celizic, a contributing sports columnist for NBCsports.com and journalist for Todayshow.com and msnbc.com, was recently diagnosed with T-cell lymphoma, and in response he's done what you might expect of a journalist—he's reporting on it, in the form of a compelling blog titled "Adventures in Cancerland"

Celizic (at right, pic courtesy msnbc.com) is not new to cancer—in 1997 he beat prostate cancer following surgery. But as he admits, he hadn't seen his doctor since then.

"Yes, I know that’s stupid," he writes. "But it’s also the way it is. You can change it in your own life, and I recommend that you do. And I’ll deal with it in my life without beating myself up over things I can’t change."

He's getting ready to start chemotherapy on July 20, and has written two very readable (and highly informative) blog entries thus far. If interested, check them out.

Adventures in Cancerland, Part 1: The Diagnosis

Adventures in Cancerland, Part 2: Lust for Life

You may have noticed some links at this site for SupportGroups.com, a fast-growing collection of support communities at one site.

The site is owned and operated by the same company that owns and operates lymphomainfo.net. It has been established as the central support group destination for several reputable health-oriented sites in their Deep Health Network, including:

MyAddiction.com
PeanutAllergy.com
CyberRecovery.net
ConceivingConcepts.com
EatingDisordersOnline.com

The groups relevant to this site at SupportGroups.com are support groups dedicated to Hodgkin's Lymphoma and support groups dedicated to non-Hodgkin's lymphoma.

You can build your own profile, throw out questions to an active and supportive community, even start an online lymphoma journal. Keep coming to lymphomainfo.net for its broad database of informative articles, intelligent blogs (*wink*), and other resources, but check out supportgroups.com to find a compassionate ear, or to help someone else who needs one.