Marianne Kelly didn’t know where to turn for help when she was diagnosed with a brain tumor almost 20 years ago.
It wasn’t so much a question of medical treatment. The doctors were more than capable of handling that part of the disease. It was everything else associated with battling cancer that overwhelmed her.
Where to find pants with an elastic waistband because steroids caused her tummy to double in size? What kind of makeup would cover the terrible acne she got from chemotherapy, but also not irritate the sensitive, red skin that resulted from radiation? Where to buy a wig and hat to cover up the hair loss caused by chemo?
“Clinically, I was doing well, but I was very depressed,” Kelly said. “I was feeling very ugly. The physicians were concentrating on healing the tumor, but they had no idea how to deal with issues like blotchy skin and how to apply makeup. There was such a void in that part of recovery for patients.”
Such concerns are no longer the case. There’s an enormous supply of cancer products and services these days, but there’s also a need for caution. Offering cookbooks and spas, dietary supplements and miracle juices, a huge industry has grown over the years to serve the needs of cancer patients and those coping with cancer in their lives.
Although no one knows exactly how large the cancer products and services industry is -- tens of billions of dollars annually, most likely -- experts say it will only continue to grow because cancer is the leading killer of Americans younger than 85.
About 1.4 million new cancer cases are expected to be diagnosed this year, according to the most recent figures from the National Cancer Institute, which also estimates that about 9.8 million Americans with a history of cancer were alive in January 2001. In terms of demographics, cancer survivors and patients -- some willing to try almost anything to get better and stay better -- represent a lucrative market, experts say.
“All cancer marketing needs to be looked at with a critical eye,” said Barbara Brenner, executive director of San Francisco-based Breast Cancer Action. “There’s so much out there now that people cannot separate the good, the bad and the indifferent. What most people are selling is a lot of hope.
“Every company that’s selling a product is trying to make money and people should not lose track of that,” Brenner added. “That’s not to say there aren’t good things out there, but there is a lot of bad out there too. We want people to think before they buy.”
There’s organic noni juice, purportedly full of cancer-fighting nutrients that kill cancer cells. There are instructional alternative home therapy videos selling for $99.99, which claim to heal incurable cancer at home.
Those with breast cancer can buy self-examination gloves that reduce friction against skin while allowing fingers to glide smoothly across the breast for $16.95. An Australian writer will send you an “Understanding Cancer” e-book for $1.45.
“We always ask people to consult their physician if they’re unsure of something,” said Carolina Hinestrosa, executive vice president of the National Breast Cancer Coalition in Washington, D.C. “They need to inform themselves, read up on everything they can find. Without question, people fear cancer. It seems to be so random. People will naturally want to do everything they can to avoid it, and that makes them vulnerable to all sorts of unsavory marketing ploys.”
Consumers should rely on the proverb “If it sounds too good to be true, it probably is,” suggested Ralph Moss, editor of a free weekly newsletter at www.cancerdecisions.com and director of the Moss Reports, which focuses on a variety of cancer types and situations.
Before buying anything, people should also consult various websites, including one run by the American Cancer Society, to read up on the disease, or consumerlab.com to check independent testing results on vitamins, supplements and nutrition products that make various health claims, Moss said.
Recovery is also a personal and individual process, Moss said. While one product might seem beneficial for one person, it might not help someone else.
“It’s a perennial problem,” Moss said. “As long as cancer has been around, you’ve got people preying on the cancer patients. There are people out there who are trying to help, but you’re also dealing with people who are quite desperate and willing to fork out $40 for something that might make them feel better. That’s the seedier side of the field.”
That was part of the reason Kelly started her own business, the Image Recovery Center, in 1993 to help patients shop for products and services in a comfortable setting.
Opening her first center in Union Memorial Hospital in Baltimore, Kelly offered cancer patients products such as nail polishes without formaldehyde, which is too harsh on thin nails; mouthwashes without alcohol, which could irritate skin; and prostheses and wigs.
Four years ago, she opened a center in the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins to sell makeup, offer hair and other cosmetology tips, and provide lingerie and bathing suits for breast cancer patients.
There’s now an Image Recovery Center at nine other U.S. hospitals.
“I just cringe when I see patients walking in with a bag full of things that are so inappropriate for them, like creams with alpha hydroxy, which can irritate sensitive skin,” said Kelly, 54, who lives in Ruxton, Md.
“We have a lot of patients who come in here saying that if they use a particular product, they won’t lose their hair. We tell them it’s not true. We tell them to consult their doctors, and we tell them to be aware that there are a lot of gimmicks out there.
“At such a difficult time in their life, they need some control,” Kelly added, “and that’s what we try to give them here at the center.”
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Research before you buy
Some helpful resources to use before purchasing products marketed to cancer patients:
American Cancer Society: The largest source of private, nonprofit cancer research funds in the United States, second only to the federal government in total dollars spent. www.cancer.org
OncoChat: Online peer support for cancer survivors, families and friends. www.oncochat.org
National Breast Cancer Coalition: Grass-roots advocacy effort in the fight against breast cancer. www.natlbcc.org
Cancer Decisions newsletter: Free cancer treatment and prevention information. www.cancerdecisions.com. Click on the link “Free Newsletter.”
ConsumerLab.com: Provides independent test results and information to help consumers and healthcare professionals evaluate health, wellness and nutrition products. www.consumerlab.com
From Baltimore Sun