Cancer information on the Web, from comfort to cold facts

NEW YORK — "Whatever you do, don't go on the Web."

That was the advice from a young family friend who'd survived malignant eye and kidney tumors when I told him I had been diagnosed with endometrial cancer.

His implication: He couldn't dodge surgery, but the Web and its dismal statistics were wholly avoidable.

I heeded the advice for about a month.

It was SuperBowl Sunday, and I was too tired to join my husband at a party. Until that night, I had eaten sensibly despite being on a drug that's an appetite stimulant.

There were just a few things I wanted to check, so I Googled away.

By the time my husband came home, my mind was humming with cancer trivia, possibly true, possibly false: Smoking or taking the pill could have protected me! This could spread to my brain! I had eaten every morsel of cheese and chocolate in the apartment.

Information

American Society of Clinical Oncology: www.pwlc.org

National Cancer Institute: www.cancer.gov/clinicaltrials

A breast cancer specialist's site: www.breastcancer.org

Duke: http://cancer.duke.edu/pated/pfrcnews

National Cancer Institute: http://cis.nci.nih.gov/fact/8_1.htm

U. of Michigan: www.cancer.med.umich.edu
/share/shahum.htm

After I calmed down, I tried to take a reporterly approach to online cancer research.

Here's what I found:

• Even rock-hard facts may not bring calm. There is no evidence, on the Web or elsewhere, that my cancer has environmental causes. My family is getting the soil from the vegetable garden tested anyway.

• Material aimed at the pros only increased my anxiety. The patient information on the National Cancer Institute's Web site was helpful; the "health professionals" version gave me a new list of worries.

• Don't surf for cancer information when you're feeling rotten, since what you find is unlikely to improve your mood. Likewise, don't surf at work.

You may find, as I did, that the Web can't answer some of your most important questions. That may be because you're reading a useless Web site, or it may be because there is no answer.

Take a standard question: Will this kill me? Your oncologist will likely give you a five-year survival rate, but it's human to want more detail. The problem is that every cancer patient is different. As a 36-year-old with a cancer that usually hits women much older, I'm a statistical freak.

I was reeling after what I read on www.PDRhealth.com (PDR stands for Physicians' Desk Reference): "It is true that the 5-year survival rate is nearly 8 out of 10 for women treated before the cancer has had a chance to spread beyond the uterus. Nevertheless, 1 in 4 women who have endometrial cancer eventually die from it."

What it doesn't say is whether the one in four women who die have cancer that has spread beyond their uterus. It doesn't tell you how old they are, or how long they live after the cancer is diagnosed.

By contrast, the American Cancer Society, at www.cancer.org, describes the different stages of the disease, with the information that more than three-fourths of patients are either in Stage I or Stage II. It gives the five-year survival rate by stage. Not surprisingly, the outlook is good for women with cancer in the first or second stage and grim for the few women diagnosed with Stage IV cancer.

A good place to find the most useful sites is the Duke University Comprehensive Cancer Center's site. (Go to the April 2005 newsletter.) One of its useful links is to www.quackwatch.org, which reviews alternative treatments from a skeptical and scientific point of view.

The Web is great for tips on living with cancer. The National Cancer Institute has the best list I've found of cancer support groups.

I'm not getting radiation, but if you are, www.cancer.org has easy-to-eat, high-calorie recipes. It also has a link to www.lookgoodfeelbetter.org, a free program where cancer patients receive tips on skin care, nail care, hair loss and makeup, plus a free makeup kit.

I loved www.Mayoclinic.com's interview with plainspoken Dr. Edward T. Creagan, who advises patients to bring someone with them to doctors' appointments. (My tip: Bring a notebook, too.) He goes a step further, as only someone who's seen many people in dire straits can, adding: "Choose someone you like."

On the topic of second opinions, he advises not to waste time getting six or seven opinions. "It doesn't make sense to spend time and money hoping to find a more pleasing diagnosis or treatment when the news is bad," he says.

Another excellent point he makes is that patients should ask their doctors what treatment will accomplish.

"For example, the doctor's statement that treatment will increase survival by 50 percent sounds great," he said. "But if 50 percent means increasing life from eight weeks to 12 weeks, and those remaining weeks are spent vomiting and battling nausea, weakness and fatigue, maybe you haven't gained much."

If all this is just too grim, go to the humor section of the University of Michigan's Comprehensive Cancer Center's site. It's uneven, but more amusing than not.

Emily Hollenberg writes on the site, "If you walk through the airport without your wig and in your bathrobe, people will give you money. The best airport, according to my sources, is San Francisco."

Also check out www.cancerlynx.com/cancerhumor.html and read what Sharon Robbins was wearing when she was stopped by a traffic cop in Jupiter, Fla.

You may find, as I have, that the best cancer information on the Web is that which validates what you already know.

If I'm feeling a little down and a little puffy, I type the name of my medication into Google, then I type "weight gain."

There are 10,300 hits.

There is comfort to be found on the Web.