Cancer survivors gather for support

Cancer survivor Kathy Sladky of Green Bay lost vision in her left eye, walks with limited mobility and, as a result of surgery, has a metal plate in the back of her head. If that "soft spot" is bumped, she would see stars.

But none of that stops her from walking, driving, and living by her own terms

"I look at life a lot differently," said the 39-year-old woman who has dealt with von Hippel-Lindau disease, a rare form of cancer that causes abnormal growths of tumors throughout the body.

At age 20, in 1985, she was diagnosed with cancer after a neurologist discovered a tumor "the size of a golf ball." (See Is VHL Cancer? below)

"I had almost died from it," she said.

It was the first of seven surgeries Sladky would endure over the next 20 years.

Sladky was one of nearly 1,000 attendees at a cancer survivors celebration event Tuesday, June 7, at Lambeau Field in Green Bay - a day sponsored by St. Vincent Hospital in partnership with the Green Bay Packers.

From individuals who have been cancer-free to those still undergoing treatment, hundreds gathered in honor of National Cancer Survivors' Day, an annual event celebrated in more than 750 cities throughout the United States and Canada.

In the state, lung cancer is the leading cause of cancer deaths in males and females, according to the American Cancer Society. Prostate cancer is the most frequently diagnosed cancer among Wisconsin men, and breast cancer continues to be the leading cause of cancer diagnosed in Wisconsin women. More than 75 percent of all cancers are diagnosed in people 55 and older.

For many cancer survivors, the love and continuous support from family members have helped them beat the odds.

Curtis Johnson finds motivation in his granddaughter Abby, his daughter Sara, and his dog, he said.
"She (Abby) had a lot to do with his getting better. Now that he's not going through treatments, he's starting to get his strength back," said daughter Sara Gerharz.

Sladky has turned to her faith in God for guidance. "I've been accepting things the way they are. This is what God dealt me and I'll do the best I can and accept it," she said.

Earl Steinbrecher credits his wife, Beth, for keeping an eye out for him for the past 20 years through his instances of melanoma cancer and prostate cancer.

"Any time one hears cancer, it's devastating. But, you have to be strong and stand by your spouse," Beth Steinbrecher said.

Many survivors said the idea of cancer never occurred to them until they personally acquired it.
Sometimes, it comes without warning, said Greg Cooley, a radiation oncologist at St. Vincent Hospital.

"Most times you don't have symptoms from these cancers until they're more advanced. It's important to catch these when they're asymptomatic," Cooley said.

For Georgia Burr, who wore a shirt that read, "Dear Cancer, I win you lose," one doctor's visit has made all the difference. With two operations and radiation for seven weeks, she has been "cancer free for three years now."

"Don't put off your mammogram or physical. I was going to put it off, but I might have been too late," she said.

Editor's Note: Is VHL Cancer?

Von Hippel-Lindau is known as a familial cancer syndrome. The simple definition of cancer is "cell growth out of control." Using that definition, all the tumors of VHL are cancer.

Some doctors do not consider a tumor to be "cancer" unless it has at least the potential to metastasize, or spread to other tissues. Using this definition, the VHL tumors of the eye, brain, and spinal cord tumors are not cancer, but VHL tumors of the kidney and pancreas are cancer because the larger tumors can metastasize. On rare occasions, the adrenal tumors (pheochromocytomas) have been seen to metastasize as well. People who have a diagnosis of VHL have a screening protocol that is essentially an "early warning" system that allows them to be watchful, and hopefully diagnose any kidney or pancreatic tumors at early stages so that they can be monitored and dealt with before they spread.

Some of the other tumors of VHL have cells that, under the microscope, are cancer cells, and are sometimes diagnosed as cancer even though they do not spread. The endolymphatic sac tumor (ELST), for example, sometimes comes back with a pathology report of "low grade adenocarcinoma with low metastatic potential." From studying these tumors over many years, we have learned that they almost never spread to other tissues. Nonetheless, an ELST can be "locally invasive" meaning that it can tunnel into nearby bone and tissue, so it needs to be controlled to preserve hearing and balance. (See Alex's story)

Cystadenomas of the epididymis have sometimes been misdiagnosed as more dangerous tumors, but we now know from watching their "natural history" that they do not metastasize. If your doctors seem to be more concerned about the metastatic potential of a tumor of VHL than the Handbook would seem to indicate, please be sure to get a second opinion before any proposed surgery, radiation, or chemotherapy. Their advice may be exactly correct, or it might be more than necessary.

As printed in the VHL Family Forum 13:2, August/September 2005. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.