Prostate cancer decision-making on treatment: Would you cut off your left foot?

Paul VanDevelder, a middle-aged journalist and father, learned five years ago that his PSA (prostate specific antigen) test showed a sudden spike in his PSA level, making him feel panicked. A doctor friend calmed him and had him learn a lot more. Paul learned that for 88% of men with elevated PSAs, the results were a false positive.

The prominent Dartmouth Medical School researcher, Dr. H. Gilbert Welch, explains the odd truth: "The presumption often is that anyone who has had cancer detected has survived because of the test, but that's not true. In fact, and I hate to say this, in screen-detected breast and prostate cancer, survivors are more likely to have been overdiagnosed than actually helped by the test." Indeed, the U.S. Preventive Services Task Force formally recommended in October 2011 that doctors stop using the PSA blood test to screen healthy men for prostate cancer.

Paul will get retested in a year, and will think carefully before any prostate surgery. He explains his decision this way to his urologist: "If your doctor told you that an asymptomatic, non-life-threatening tumor was growing on the instep of your left foot, would you cut your foot off?"

Advice to men with elevated PSA levels: Think carefully before deciding on prostate surgery.

Read about another journalist's decision on prostate cancer. Thanks to Paul for sharing his story in today's Los Angeles Times, where the full article can be found.

I've done a lot: A prostate cancer patient's choice

Thirty years ago Forbes Hill of Brooklyn learned he had prostate cancer. At age 50, with a young wife and a fear of the common side effects of treatment—incontinence and impotence---he chose what oncologists call "watchful waiting." For 12 years, Forbes was fine. Then in 1990 his PSA count, a measure of cancer activity, began to rise, and he had radiation therapy. That dropped the count to near zero. In 2000, with the count up again, he chose hormone therapy, which worked for a while.

Three years ago, with his PSA level going through the roof, he learned that the cancer had spread to his bones and liver. It was time for chemotherapy, which Forbes said he knew could not cure him but might slow the cancer's progress and prolong his life.

His oncologist was candid but not very specific. His doctor told him that with advanced metastatic hormone-resistant like his, 90 percent of patients die within five years no matter what the doctors do, and about 10 percent survive six or more years.

"I took that kind of hard," said Forbes, an associate professor of media studies at Queens College. "I always thought I would live to 90, but I guess now I won't."

He just started radiation to the brain, perhaps with infusions of an experimental drug afterward. "I'll try chemo for six months, but if it gets too uncomfortable and inconvenient….,” he said, trailing off. "Having lived 80 years, I've done a lot. I don't have a reason to think I've been badly treated by life."

Forbes seems ready for a time when treating his cancer is no longer the right approach, replaced instead by a focus on preparing for the end of his life.

But doctors who have studied patients like Forbes say that often they do not know when to say enough is enough. In a desperate effort to live a month, a week, even a day longer, they choose to continue costly, toxic treatments and deny themselves and their families the comfort care that hospice can provide.

Advice: Make your own choice. Live life on your own terms.

Read another story about a cancer patient’s attitudes toward the illness.

Thanks to Jane Brody for the source article in the Aug. 18 issue of the New York Times.

My wife made the appointment for me: PSA test and prostate cancer prevention

Adam’s story:

My name is Adam. I’ve been diagnosed with prostate cancer at the age of 45.

There is NO cancer in my family. I had absolutely no symptoms.

In May of 2007 after some blood work from my annual physical a red flag occurred. My PSA jumped from 1.0 to 3.5 over a 2-year period. PSA (Prostate Specific Antigen) is a test that screens your levels of protein in the prostate gland to se if there is danger of cancer. The rise in my PSA led me to see a urologist who had my prostate gland biopsied. It was this test that showed I have a very aggressive cancer (Gleason 9) growing inside me. The Gleason score of 9 basically said I had the most extreme form of growing cancer and the prognosis is NOT good.

This PSA test has been approved by the FDA to be tested for men over the age of 50 unless there IS cancer in the family. For some strange reason, my internist runs the test for every man over the age of 40. HE probably saved my life. Why??? Because I was tested early and often. Most people who get a Gleason score of 9 or 10 in their 40s do not have a good chance of surviving more than 5 years. The reason is that the cancer is growing so fast that it is likely spread to other parts of the body. Because I was tested, it looks like my cancer was caught early enough so that my prognosis is better than most with a Gleason 9 in their 40s.

The irony of this is that my wife made the appointment for me. You know you get wrapped up with work, family and life. Never seemed able to make the time. I just kept coming up with excuses. Thank God she made this appointment! Don’t be like me!

Adam’s advice to middle-aged men: Make sure you get your annual check-ups and make sure your doctor tests for PSA. They are already taking blood for other tests; they can do a PSA too.

Maybe this exam will save your life or a family member or friend. It most likely saved mine.

Read another story of how a wife saved her husband.