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Rare cancer patient finds support
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Tom Lamb, of Boardman, center, traveled to California for a fundraiser to benefit Lea Allen, 28, left. Lamb, Allen and Kana Yang, right, all have epithelioid sarcoma and met one another through an online support group.
BOARDMAN
Tom Lamb is among 400 people nationwide with epithelioid sarcoma cancer.
Unfortunately, none of the other 399 people live in the Mahoning Valley.
When Tom, 50, of Boardman, was diagnosed in 2006, he and his wife, Lori, searched online for more information. In addition to medical websites, they also found an online support group through Yahoo!.
The bonds formed with the 48 group members, who are cancer survivors and caregivers, are tight, Tom said.
So tight, in fact, that Tom and Lori traveled to California last month for a fundraiser for Lea Allen, 28, of Rocklin, Calif., who also has epithelioid sarcoma.
“It was like we knew each other for 20 years. The trust level was incredible,” Tom said of meeting Allen.
Online support groups are growing in popularity, especially with the prevalence of Facebook and Twitter, said Al Stabilito, Northeast Ohio public relations director of the American Cancer Society.
“There’s nothing like being able to chat with someone else that’s had that type of cancer and gone through the same type of thing,” he said.
The American Cancer Society has a Cancer Survivors Network available online at http://csn.cancer.org/
Epithelioid sarcoma usually starts as a painless slow-growing mass, but it often spreads among lymphatic channels and can damage other parts of the body, Tom said.
Usually, epithelioid sarcoma cancer is misdiagnosed or unnoticed, Tom said, and he credits his local physician, Dr. Daniel Ricchiuti, for recommending that he go to Pittsburgh for more tests.
“It’s a rare cancer. There’s no cookie-cutter treatment,” he said, noting that the 10-year survival rate is less than 10 percent.
And Tom said that often there’s not good news waiting online.
“A lot of times, we’re looking for help, asking ‘What worked for you?’” he said.
The fundraiser in California was the first time Tom and Lori met other support-group members in person.
“There are hundreds of other ways to spend the money,” Lori said. “We don’t do things on a whim, and this was such a gratifying and rewarding experience.”
Tom and Lori said another member of the Yahoo! support group who lives California came to the fundraiser.
Just last year, Tom thought he was cancer-free. He gave the survivor speech at Relay for Life of Boardman. A week later, a scan showed that the cancer had returned.
Tom’s family and friends, many of whom know him from his job at the township road department, had a fundraiser in September.
“I knew how well the fundraiser made me feel, and that’s why I wanted to go to Lea’s fundraiser,” Tom said.
Now, he has finished his treatment for the second time, flown to California and will have his post- treatment scan March 1.
His motto, inscribed at the end of every support-group post, is “Keep the faith.”
“It’s not a religious thing. It’s about having confidence in your doctors and your treatment and yourself,” he said.