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.”
I am 60 years old and am scheduled to have prostate surgery May 27,2009,I am totally not sure if I am doing the right thing,My psa is 4.3,gleason score 6,with only 27% in one biopsy.People expect you to have surgery without evening knowing the side effects and think you are crazy for not having the surgery,My wife is supportive of what every I do,we still have an relative active sex life,I would like to wait but have not found a doctor that agree with this approach(I have only talked to surgeons)I wish some one would comment to me.
I’m sorry I did not see the comment you left on my blog until today. I suggest you consider *postponing* the radical prostatectomy until you are totally comfortable with your choice. There is no rush to do this procedure. Please do not have surgery just because of peer pressure or because you have a date set for the procedure.
Surgery has it’s place in PC treatment, but it is common knowledge that there is an epidemic of “overtreatment” of PC, mainly by surgeons. You DON’T want to end up as one of those statistics. Doctors routinely underplay the potential side effects of RP.
Please write to me and I will try to help you find a doctor who can give you a second opinion – or third or fourth. You may be a candidate for active surveillance or radiation. I mention in my post, “Straight Talk for the Newly Diagnosed” a step-by-step procedure that newly diagnosed PC patients should follow in choosing a course of action. The content is not from me but from Johns Hopkins.
Did you know that something like 60% of men over sixty have some prostate cancer in their bodies (found at autopsy)? I strongly suggest that you look into Active Surveillance and other, less invasive treatments.
I was diagnosed with prostate cancer May 2008 at age 54. PSA 1.92. Gleason 6.
I opted with much resistance from family and physicians to do active surveillance. PSA tests every 3 months and a needle biopsy every year.
I just had my biopsy. 7 of 12 positive cores. One of which was gleason 7. I have decided to have the surgery.
Was I wrong to wait? I don’t know. I’m scared now. Has my cancer gotten worse? The physicians don’t know. Maybe they just found what was there a year ago.
Even knowing what I know now, I still feel that it was a reasonable risk to wait.
Breast cancer and Ovarian Cancer institute provides information source on Genetically Based Cancer, cancer organizations, researchers, governments and those diagnosed to improve outcomes in breast and ovarian cancer.
Thanks for sharing this resource with us.
Dear husband and I think your decision was entirely reasonable. And you seem to have the right perspective on things. AS is NOT an easy way out, as some people think. As one person involved with PC put it: We are fighting 2 battles, one against prostate cancer and the other against *anxiety*.
Good luck on your sugery.
Improved molecular diagnostic tools will be the game-changer that everyone is looking. Our research at Cornell is encouraging in illustrating gene fusion and the prediction of aggressive tumors. Better diagnostic tools will help with focused therapies and targeting those prostate cancer patients who will benefit from surgery (robotic or not), radiation, etc.
Furthermore, I think we live in a culture where we feel the need to “do something.” We’re definitely seeing the effects of this mentality in the rising cost of healthcare.
Just found out I got PC PSA 4.2 Gleason 4.8 my PSA has been slightly elevated the past 3 yrs.The last 2 digitals showed no enlargement. had biopsy last month. I talk to doctor July 8th to give me my options. I’m going to try watchful waiting ,get dopler etc. Any treatment will have to be done at VA hospital and that scares me more than the cancer.
The questions you asked are more appropriately put to a doctor. Do re-check your Gleason score: 4.8 does not sound right. I suggest you don’t fixate on any one treatment until you’ve spoken to a few doctors. (See my post, “Straight Talk for the Newly Diagnosed”.) Also have your biopsy slides reviewed by an expert.
Re: the VA — I don’t think you should be scared because of one screw-up (VA Hosp. in Philly gave men with PC wrong radiation treatment). Many “pundits” have said that VA hospitals provide better care than most private hospitals. They do certain tests at the VA hosps, for example, that most private doctors don’t do. I am talking about the ultra-sensitive PSA test. I will ask a friend who is a vet who knows about these issues what he thinks of the care at the VA Hospitals.
How was your appointment today?
Leah, thanks for your post
I will let you know after 2:00. I will ask about the ultra sensitive PSA and the 4.8 Gleason. The VA? don’t forget the 10 people who contracted hepititis B or C during colonoscopies because of dirty equipment. But it could happen anywhere. Now I’m off to find your post(straight talk)
My psa was 4.8 down from 5.6 the year before. Doc said of the 6 needles on the right side 70% were positive for cancer . The left side was fine. My gleason was 3+3=6. He sugested surgery. I have appointment with radiation. I want to have my slides looked at by someone else and take it slow
You seem to be doing the right things. Do get an expert at Johns Hopkins or MSK (Sloan Kettering) to review your biopsy slides. Based on what you’ve told me I don’t know whether you are a candidate for watchful waiting. Surgery might make sense in this case. *But of course I am not a doctors*, so I suggest you confer with a number of doctors and get their opinions about your case and only then embark on a course of action.
If you want to talk some more email me offline @ firstname.lastname@example.org
I can do everything, change diet, exercise but the stress is unbearable. I feel just like Mr. Alston did vision of cancer eating me up!I’m having my slides sent to Jon Epstein MD at John Hopkins. Unless They suggest otherwise I’m going to have surgery. I talk to radiation Doc in 2 days.Maybe they can explain my Gleason score a little better.I don’t understand a guy with 1 needle at 2% can have a 6 and me with 70% on something can be a 6
Mr. Paddock please keep us informed .
All of you are in my prayers.
PSA was 3.6 – doubled in three years. Return PSA 4.1 Biopsy 3 out of 12 were cancerous, but only 10% Gleason score 6. I waited 2 months before returning to doctor and subsequent PSA was 2.8 I am 56 and want to do watchful waiting, but doctor [surgeon] keeps insisting surgery is my best option. Concerned about waiting “too long.” Where would I go for 2nd opinion?
I am a bit pressed for time but will do my best. Even though I am not a doctor, from what I’ve read I don’t think you will be harmed by taking some extra time to make the decision that’s best for you. But you did not mention your Gleason score and so I’m missing part of the picture. I can’t recommend a specific doctor for a second opinion, but it’s not a bad idea to have a look at Castle Connolly’s book, “America’s Top Doctors for Cancer”. You can purchase it online or find it at your local library. If you have not had your *biopsy slides* reviewed by a pathologist who is an expert in prostate cancer, you absolutely must do this. Look at my post here, “Don’t Skip That Second Opinion” for a list of specialists.
In the on-line PC patient community, the go-to guy for info on active surveillance (AS) is Terry Herbert, an absolute gem of a man who also runs the yananow.net (You Are Not Alone) website, which provides information and support for men with PC. Hundreds of men have posted their own stories on this site, and some have also agreed to “mentor” others. You can also e-mail Terry through the social network, “New Prostate Cancer Infolink” (prostatecancerinfolink.net), of which he is a member. The way this works is that you first have to add the person as a “friend” I will also give you Terry Herbert’s personal e-mail address, but please use it judiciously. It is: ghenesh_49@OPTUSNET.COM.AU. You can also join the AS forum at the PC Infolink social network and ask a question there.
I have to make it very clear that Terry Herbert IS DEFINITELY BIASED in favor of active surveillance, but he is a good source of info anyway (he can usually back up what he says) and is respected in the online PC patient community.
There was also a fantastic editorial on the PC infolink News Blog recently (9/1/09) about active surveillance written by the very knowledgeable Mike Scott. Check it out at prostatecancerinfolink.net (front page). It is called, “Is the Pendulum Finally Swinging?”