After prostate cancer, there are many paths to getting back in the game

In 1994, Carl Frankel wanted his primary doctor to check his PSA level. This involves getting a blood sample and noting the level of prostate specific antigen, a marker that can indicate if further testing in needed.

His doctor at the time told him the test was unreliable and he didn't believe in it. So Frankel, an attorney in Pittsburgh, didn't push the issue. Two years later, he made sure he got the blood test. And his PSA level was far above the normal range.

He underwent a biopsy of his prostate gland. The result: Cancer in both lobes. His urologist outlined three options: a prostatectomy (the surgical removal of his prostate), radiation therapy directed at the site of the cancer, or "watch and wait," said Frankel.

He was without a clear course of treatment. He had to make a decision, and in order to do that, he needed to do some research.

Frankel's story is not unique. According to a study published in the August issue of the Journal of Clinical Oncology, there are currently no standard treatment protocols for early-stage prostate cancer.

In other words, where a man lives and who his doctor is often decides his treatment. And then there's the recent news that checking for prostate cancer over the age of 75 is not recommended by the U.S. Preventative Services Task Force.

While prostate cancer can seem to be a conundrum -- it's generally a slow growing cancer yet it is the second leading cause of cancer death for American men -- the bottom line is not related to news: men need to know about it and its treatment options in order to make informed decisions about their own health. Carl Frankel is now 73. He is doing well. He has his PSA checked every month. His motto: "You've got to follow-up."

After considering his options, he's undergone a prostatectomy, external beam radiation and hormone therapy since his diagnosis. He chose the surgery first, for if it failed, he could proceed to radiation.

He weighed the pros and cons -- removing the prostate removes the source of the cancer. It is often considered the gold-standard of treatment. However, it is major surgery with a definite recovery period that can be difficult. And there are risks of erectile dysfunction and incontinence. For Frankel, surgery wasn't enough. Less than a year later he underwent radiation therapy because his PSA was rising again. But again this treatment wasn't successful for long.

"The next step was hormone therapy, but I wanted to put it off as long as possible," said Frankel, due to the common side effects (usually bone weakening, loss of muscle mass and hot flashes, among others).

So he looked into a clinical trial, and was accepted. Many clinical trials leave the participant unsure of whether he is getting placebo (no treatment) or the new drug. In this one, Frankel was assured he would be getting the treatment.

However, his PSA didn't drop. So he started hormone therapy in 2004. The therapy he avoided for its possible side effects ended up giving him a side effect he didn't mind too much -- "I grew my hair back," he said. Yet, he attributes this lack of negative side effects to his efforts to find an oncology specialist. "He didn't prescribe one-size-fits-all drugs," said Frankel.

He is now on estrogen patches. A healthy diet of "very little red meat" and mostly chicken, fish and pasta, as well as exercise, play a big part in Frankel's life, too. He does cardiowork outs, weight training, and is only hindered by "an old basketball injury" and "arthritis in his knee," he said.

His message to men: Know your PSA. Make it a priority. He said men have to "become informed and take an active part in the decision making process."

Fred Mills agrees. The 65-year old health care executive from San Antonio, Texas, went to five different medical facilities in order to do "massive amounts of research" after hearing his diagnosis. His prostate cancer was found during a routine physical 11 years ago. Like Frankel, Mills found the Internet a great tool. "The UsToo database has a wealth of information," he said.

And like Frankel, he also had a prostatectomy, needed radiation afterwards, as his PSA began to rise 18 months later, and then had hormone therapy. Today his PSA is "still undetectable" as it has been for the past year now. He exercises every day. "Men can't be afraid to talk about it (prostate cancer)," said Mills. "They need to get checked and know their PSA."

Some prostate cancer responds to one therapy alone. Robert Fidoten of Pittsburgh is an 80-year-old who was diagnosed in 1997. He'd been keeping track of his PSA and during a prostate cancer screening, saw that his PSA was elevated from the previous year's value.

After a biopsy, he was presented with seven different options after talking to his regular doctor, a radiation oncologist and a medical oncologist. "It was not immediately clear what treatment was best," he said. He decided to go with external beam radiation. For seven weeks, five days a week, underwent treatment.

Now he has his PSA checked three times a year and it is stable and low. This recently retired professor of information sciences exercises at the fitness center every week and still works with his personal trainer as he has for the past 17 years. "Get tested, get informed," he said. "Insist with your doctor to get PSA testing done at age 40."

Dr. E. David Crawford said men at higher risk should be checked at 35. Dr. Crawford is professor of surgery, radiation oncology and urology at the University of Colorado and he is director of the Comprehensive Cancer Center in Denver.

The best course, he suggests, if a man has an elevated PSA, is to seek treatment at a "multi-disciplinary clinic," where a variety of specialties involved with prostate cancer treatments are available, such as radiology, oncology, urology. New treatments, such as cryosurgery, or freezing of the cancer cells, and radiation seeds, which are implanted in the patient, are "options for a lot of men," Dr. Crawford said. The robotic-assisted prostatectomy allows for precise surgical maneuvers around tissue and nerve and also usually results in decreased blood loss due to smaller incisions.

For men who are dealing with prostate cancer, in the midst of treatments or newly diagnosed and looking at the future, know there is a lot of support available. Whether you choose to wait and watch your PSA level, or robotic prostatectomy, there are men who've been to these places and are willing to talk about it.