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After cancer diagnosis, what comes next?

By Elizabeth Cohen
CNN Medical Correspondent
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Diagnosed with cancer
STORY HIGHLIGHTS
  • In the U.S., 1.4 million people will learn they have cancer this year
  • A multitude of online resources exist for cancer patients
  • Resources go from how to choose a doctor to how to read a pathology report

ATLANTA, Georgia (CNN) -- One minute, Dr. Bernadine Healy was a perfectly healthy woman, in bed with her husband watching the Oscar De La Hoya fight on HBO. A few hours later, she was diagnosed with a malignant brain tumor.

"It's horrible, it's shocking," Healy says of her diagnosis nine years ago. "It takes awhile to digest what's happening."

Once over the initial shock, Healy, former director of the National Institutes of Health, went to work, combing the latest literature and talking to experts about the best treatments.

In the United States this year, 1.4 million people will learn they have cancer, as Sen. Edward Kennedy did this week. Most of them don't have Healy's expertise, nor do they have her contacts with renowned physicians. So here's a guide for where to go in the days and weeks following a cancer diagnosis:

1. Get basic information about your cancer

If you're like most people, you're clueless about cancer. Then all of a sudden, it's the most important issue in your life. To get the basics, click on your cancer type in this A to Z directory by the National Cancer Institute. Memorial Sloan-Kettering Cancer Center also has an easy-to-use guide with basic information, as does the Mayo Clinic (click on the "find it fast" orange box on the left).

2. Pick a doctor

Now that you know a bit about your illness, you can search for a doctor. The American Society of Clinical Oncology has a searchable database of cancer doctors, known as oncologists. The American College of Surgeons has a list of surgeons.

Get tips on choosing a doctor from ASCO, the Memorial Sloan-Kettering Cancer Center and the National Cancer Institute. The NCI also has a list of designated cancer centers across the country.

  • Lance Armstrong Foundation: Cancer advocacy
  • American Cancer Society: Resources
  • American Society of Clinical Oncology: Cancer physicians
  • In Depth: Empowered Patient
  • One of the first things your doctor will do is grade and stage the tumor. These ratings give an indication for how severe and fast-growing the cancer is. Click here for an explanation of staging, and here for an explanation of tumor grading.

    The National Comprehensive Cancer Network, an alliance of 21 leading cancer centers, has guidelines for treating many common types of cancer -- you can compare them with your doctor's treatment plan for you.

    Once you start treatment, this online form can help you keep track of your treatment plan. This form from the American Cancer Society helps you track side effects and share the information with your doctor. Empowered Patient: Watch details of how to find reliable cancer information

    3. Learn how to read your lab reports

    Pathology reports have all sorts of valuable information, including how large the tumor is and whether it's spread. You don't have to be a doctor to learn how to read them. ASCO has some tips, and so does cancerguide.org, a nonprofit online information service founded by a cancer patient.

    Having a cancer dictionary by your side will help. Here's one from the NCI, and another from the American Association for Cancer Research.

    Visualizing where the cancer is inside your body can help, too. Click here for illustrations of various cancer sites.

    4. Find alternative medicine for cancer

    Many cancer patients want to know about herbs, supplements and other alternative approaches to fighting cancer, but doctors didn't learn much about those in medical school.

    To find out more on your own, go to alternative medicine guides from the M.D. Anderson Cancer Center, Memorial Sloan-Kettering, the NCI and the .National Center for Alternative and Complementary Medicine at the NIH.

    There's also a lot of bad information out there on alternative medicine, especially from people who are trying to make a buck off cancer patients. Breastcancer.org, a nonprofit educational group, has tips for figuring out whether an alternative medicine practitioner is reputable.

    5. Find support groups

    There are countless support groups for cancer patients. Here's a state by state listing of groups associated with the Wellness Community, a nonprofit cancer support organization. NCI has a list of support groups organized by cancer type. ASCO also can help you find a support group.

    If you prefer an online group, go to the sites for the Association of Cancer Online Resources, CancerCare, or the Wellness Community.

    If you still can't find a support group for your particular cancer type, check out ASCO's list of cancer communities -- everything from Adenoid Cystic Carcinoma Organization International to Waldenström's Macroglobulinemia.

    6. Find clinical trials

    At some point in your cancer treatment, you may decide to join a study of a new therapy. The NCI, ASCO and the Coalition of Cancer Cooperative Groups have guides for finding clinical trials. They also have questions you should ask before becoming involved in these medical experiments.

    7. Figure out how to pay for all this

    If your insurance isn't perfect (or if you don't have insurance at all) there are programs to help, such as CancerCare Assist. Click here if you have leukemia or lymphoma and need financial help, and click here for financial assistance with bone marrow and stem cell transplants.

    Even if you have great insurance, you might still need help traveling to get the care you need. Click here and scroll way down for programs that help pay for travel for cancer patients.

    Click here and here if you need help paying for medications.

    Finally, if your insurance company is giving you a hard time, you can consult the Patient Advocate Foundation. Here's a guide to understanding insurance terms and issues.

    While these Web resources are excellent, there are some pitfalls to watch out for in your search. "At some point, what these sites are going to give you is a closed loop," Healy says. "You're going to feel like you're reading the same thing over and over again."

    Health Library

    In that case, you can do what she did: Go to the National Library of Medicine and look through original scientific articles. It might not be easy, but you can learn how to read these studies. The National Library of Medicine's site is called PubMed, and here's a tutorial to learn how to use the site and read studies.

    While you're looking for information, don't forget
    Web sites that can inspire you. Shelley Lewis, author of "Five Lessons I Didn't Learn from Breast Cancer (And One Big One I Did)" recommends Kris Carr's Crazy Sexy Cancer blog and Jeanne Sather's The Assertive Cancer Patient.

    Lewis warns it's easy to get overwhelmed on the Internet. "Do your research one step at a time," she advises. "If you're looking for a surgeon, go to those sites. You'll have time to learn about radiation and chemo options later on."

    CNN Medical News senior producer Jennifer Pifer and associate archive coordinator Sarah Edwards contributed to this report.

     
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