I am glad to see the subject of “Watchful Waiting”, or “Active Surveillance as we call it now, being discussed more often as an option for men diagnosed with prostate cancer. I also think it’s good that more guys are pursuing AS rather than jumping into (or being prodded into) invasive treatments. It used to be that some guys who chose to wait and monitor their PC were branded as cowards. Unfortunately, some of this still goes on.
Our very own Darryl Mitteldorf of Malecare, the charitable organization that sponsors this blog, was interviewed at length for the article below, which appeared in the WSJ the other day. (“Watchful Waiting’ for Prostate Cancer Gains Traction”, by Melinda Beck, Wall Street Journal, April 18, 2009.)
Great job. Dear husband loved the quote about micturation.
Here are some excerpts:
“One evening a week for more than 10 years, a group of 15 to 25 men have met in a conference room in New York to talk about their prostate cancer. In the beginning, most of them swapped stories about their surgery or radiation, says Darryl Mitteldorf, a social worker who runs the group. Now, he says, more than half are doing “watchful waiting” — just monitoring their cancer to see if it grows.
“Some come in newly diagnosed and frightened, and they learn from the other guys that the word ‘cancer’ doesn’t necessarily mean it’s life-threatening,” Mr. Mitteldorf says.
“About 185,000 men are diagnosed with prostate cancer every year in the U.S. Experts say most of them have such slow-growing tumors that they would likely die of something else long before their cancer causes problems. Yet some prostate cancers do turn lethal, killing about 27,000 U.S. men each year. It’s difficult to tell which men have which kinds of tumors.
“So patients face a tough decision: Should they treat what may be a harmless cancer with surgery or radiation — and run a high risk of impotence or incontinence? Or should they wait to see whether the cancer spreads and hope they can catch it while it’s still treatable?
“In the past, only about 10% of men have opted to just watch their disease. But with prostate cancers being found at ever earlier stages, more men are weighing the trade-offs carefully. ‘Doctors genuinely believe they are extending lives,’ says Mr. Mitteldorf. ‘But from a guy’s point of view, it may not be worth it to add five months to their life in the 95th year if they’ve been peeing in their pants for a decade.’
“Doctors say the best candidates for watchful waiting are men whose levels of prostate-specific antigen, or PSA, are below 10, whose Gleason scores (a measure of abnormal cells seen in a biopsy) are below 7, and whose cancers can’t be felt on a digital-rectal exam.
“It can take a lot of courage to live with untreated cancer. When Stephen Alston, an information-systems professional, was diagnosed with it in 2005, at age 48, every new sensation he felt gave him ‘visions of being eaten up by cancer,’ he says. But his cancer was small and low-grade, so he decided against surgery. He now has his PSA level checked every three months; a digital-rectal exam and a Doppler ultrasound scan every six months; and an MRI every year. ‘I’m comfortable with my approach, and I recommend it to others,’ he says.
“Some patients say they have trouble finding a doctor who will agree to supervise such a regime. Peter Scardino, chief of urology at Memorial Sloan-Kettering Cancer Center in New York City, says doctors often urge patients to have surgery ‘not because they think you have a more aggressive cancer, but because they can’t be sure you don’t.’ He says he has removed some prostates only to find a much more extensive tumor than expected and thought, ‘Thank God we operated.’
“Even so, Dr. Scardino believes that many more men could safely monitor their cancers. He’s running a clinical trial studying watchful-waiting patients at Memorial Sloan-Kettering. Similar studies are going on at Johns Hopkins University Medical Center in Baltimore and M.D. Anderson’s prostate clinic in Houston.
“For those facing the decision, a support group can provide a useful sounding board. Mr. Mitteldorf says the group he runs, part of the national organization called Malecare, operates much like a ‘neural network,’ with members pooling their knowledge. While some men learn that their cancer is comparatively low-grade and that the consequences of surgery might be worse, for others the group provides a reality check. ‘They’ll say, ‘You had 12 [biopsy samples] out of 12 positive for cancer — that’s really serious,’ he says.
“Indeed, for some men, watchful waiting is a euphemism for denial or indecision. Some don’t tell their wives or children about their diagnosis, and some neglect their own health to put a higher priority on their families. Tom Hall ignored his rising PSA for two years because his wife was dying of breast cancer. ‘I have two kids, and I didn’t think they could take the stress,” he says. Then he joined a clinical trial at the National Cancer Institute that is monitoring prostate cancer with MRI imaging. ‘The MRI gave me confidence to do the watchful waiting.’ he says. ‘I’m very comfortable now. My kids can tell I’m being very straight with them. I can show them the results.’
“For some men, the diagnosis serves as a wake-up call to make healthy changes in their lives. ‘I used to eat a lot of red meat and dairy. No more!’ says Dick Allen, a retired helicopter mechanic in Anchorage, Alaska. He opted out of robotic surgery last fall to try exercise and a radical dietary shift first. He has lost 30 pounds and cut his PSA to 4 from 8.2. ‘I realize I’m somewhat out on a limb, but I think the limb is fairly solid, he says.
“Studies show that getting adequate vitamin D can help slow the progress of cancer, along with eating a Mediterranean diet, getting exercise and reducing stress.
“Of course, a diagnosis of prostate cancer itself is stressful. But many men who have opted for watchful waiting say that knowledge is power — and that monitoring their cancer is far more reassuring than ignoring it.’
“Guys, don’t wait to have it checked out,’ says Mr. Hall. “I know it’s the last thing you want to do, but do it. If you come in early, you still have a chance to see how aggressive it is, and you still have lots of choices.”