CROWN POINT | If you type "appendix cancer" into Google, Carolyn Langlie-Lesnik's website is the top search result.
That's no accident. Since the Crown Point woman, now 51, was diagnosed with appendix cancer in 2001, she has become a self-taught expert on the rare cancer and is working to make sure others with a similar diagnosis can get their questions answered easier than she did, and she had the advantage of being a nurse.
Langlie-Lesnik was told she had cancer after stomach pains led to the removal of her appendix. She was floored when a Chicago surgeon told her not to even bother coming into the office for a consultation. She was told nothing could be done for her.
She went online to further research her diagnosis and discovered there was almost no information about this particular cancer, although she did come across the Memorial Sloan-Kettering Cancer Center in New York, which offered a 28 percent success rate for her type of cancer.
"Twenty-eight percent survival rate is better than zero," said Langlie-Lesnik, whose daughters were 10 and 11 at the time and the thought of "abandoning" them if she died broke her heart.
Her treatments were successful, and after three years of being cancer free, Langlie-Lesnik went back online to see if information about the cancer had improved.
"I think I had read every bit of medical literature on the subject," she said. "I thought, 'How do you let people know about this?'"
She took a class at Merrillville High School on Web design and bought software on eBay. In 2005, she created her website, www.appendix-cancer.com, and two years ago, she created a nonprofit called the Appendix Cancer Connection, for those who are diagnosed.
"I did it because it needed to be done," she said.
Dr. Raymond Viele, a veterinarian based in Fennville, Mich., recently underwent surgery for appendiceal cancer. He said when he was told of his diagnosis, "the news hit me like a tidal wave."
"Carolyn's website was the first one that I visited, and it was a godsend," he said in an e-mail. "It gave me hope, it gave me direction"
Now Langlie-Lesnik has been involved with the American Association for Cancer Research's Cancer Disparities Conference and participated in the "Heat it to Beat It" walk, a walk to raise money for the use of heated intraperitoneal chemotherapy. She's on the board of the American Society for Peritoneal Surface Malignancies, and has been to Washington, D.C. twice and San Diego related to her cancer work.
"It's kinda become my life's purpose," she said.
Down the road, she'd like to create a hotline, and a brochure about the disease for the medical community, but for now she enjoys celebrating the things she thought she might miss. In December she traveled to Ball State University to visit her daughter as she turned 21, a milestone she feared she would miss.
"I'm very blessed," she said.