Last Father’s Day, Sen. John Kerry and the radio host Don Imus teamed up to write an op-ed in the Boston Globe urging more African-American men to be screened for prostate cancer.  Something about this didn’t sit right with me.  First, there was the issue of Don Imus, who allegedly made some racist remarks on air, being the standard bearer for this campaign.  (I confess I sometimes listen to Imus, and I don’t think he’s dumb enough to be a racist — just has a big mouth.)  More important, I thought this campaign didn’t go far enough — it just seemed like a feel-good gesture for Father’s Day.  One of my favorite bloggers, Dr. Kevin (kevinmd.com), agreed with me, writing that this was “lazy” advocacy.

How can you be critical of a PC awareness campaign?  First, as Dr. Kevin pointed out, screening for PC is no longer a no-brainer: it is something that should be thoroughly discussed beforehand with one’s physician.  (But if I were a black man, I would run to be tested.) But there are larger issues.  We know that African-American men have the highest rates of PC in the world.  They get more aggressive forms of the cancer and are more likely to  get it than men of other races– even if they are given the same treatment .  So screening is just a first step.  We need to go much further, to understand WHY prostate cancer is so common and deadly among black men.  Could there be a genetic link?  Finding this out will require lots of money and persistence.   To be fair, the Imus-Kerry piece I referred to earlier did urge the federal government to set aside many more research dollars for this purpose.

Until recently it was thought that black men were more affected by prostate cancer because of environmental issues like lower socio-economic status, poverty, poor access to good medicine and racism.   But recent studies have found these factors to have a limited effect on outcomes.   I recently read a blog post by a young African-American man who put forward an original theory, that low self-regard was causing black men to neglect their health, and prostate cancer was, in his view, a form of suicide.  This latter view, although original and well-meant, has to be rejected out of hand because there’s no evidence to support it.  

Researchers have been paying more attention to genes as a possible cause of prostate cancer in black men. That’s why I was pleased to find an article in my newsbin today about this subject:  “Genetic Mutation Linked to Prostate Cancer in Blacks“, by Robert Preidt, February 22, 2010.   http://www.businessweek.com/lifestyle/content/healthday/636176.html?campaign_id=rss_topStories.  Researchers found that several African-American men from the same family  all carried a mutation in a certain gene.  The damage was to the “AR” or “Androgen Receptor” gene, which has been widely studied in white people, but not in African Americans.   Figuring out how this particular gene mutates and finding a way to interrupt the process might someday yield life-saving results.

I became more interested in genetics and PC in black men because of a story I read in Slate magazine some months ago(”Mortal Skin: Race, Genes and Cancer” by William Saletan, Slate, July 2009).   According to the author, there was new, groundbreaking research reported in the Journal of the National Cancer Institute that proved there was a link between poorer outcomes for ”gender-specific” cancers, including breast, ovarian and prostate cancer, in people of African descent.  http://jnci.oxfordjournals.org/cgi/content/abstract/djp175  BUT, the author complained, this important research was being suppressed, was completely ignored by the “mainstream media”,  because, in their view, in was not politically correct.

Here I had to scratch my head a bit.  I didn’t understand why finding a genetic cause for black PC would be politically incorrect.  But my husband suggested that announcing that race is linked with cancer  might be stigmatizing to an already vulnerable group.  That’s what the article in Slate was about.  The author noted that many black scholars are comfortable with discussing poverty or discrimination as causes of serious illness or other adverse conditions in their community, but they are quick to reject possible genetic links.   But I agreed with the author that the most important thing here is to save lives, and if research in genetics  will lead the way, than it’s a sin NOT to follow that path.

I can tell you that a very dedicated oncologist named Lisa Newman is already making progress in studying genetics and breast cancer in black women.  The doctor noticed that many of her black patients had a lethal form of  breast cancer called “triple negative.”  She took DNA samples from the patients and noticed that they all carried a certain defective gene.   The doctor then took matters into her own hands.  She traveled  the 16 hours from Detroit to Ghana to collect saliva samples from as many woman as she could to further her research.  Why Ghana?  Because it had been a way station for Africans slaves being transported to America.   The doctor found that about 60% of Ghanaian women carried the gene associated with triple-negative breast cancer.  Knowing how dedicated and accomplished Dr. Lisa Newman is, I’m hoping for a miracle.

In case you didn’t know it, breast cancer and prostate cancer are related — they both are fueled by the body’s hormones, estrogen and tetosterone, respectively.   So a breakthrough in breast cancer genetics might actually help men with prostate cancer.  (E.g., the BRCA genes associated with breast and ovarian cancer have also been found in PC patients.)

But we need our own Lisa Newman.

The NCCN, or National Comprehensive Cancer Network (nccn.org,  *not* nccn.com) is a consortium of nearly 20 of the top cancer hospitals in the country.  Each year the NCCN issues “practice guidelines” for doctors relating to specific cancers, and these are taken very seriously by medical professionals and others.  (Note that doctors are not obligated to follow the practice guidelines. )

The good thing is that the NCCN practice guidelines are also available to patients — all you do is go to nccn.org, register and you can download the guidelines or read them online.   They include “decision trees”, or flowcharts, that might help you in choosing a treatment (or not).  http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

The NCCN recently created some buzz by revising its policy on ”active surveillance” (AS), formerly known as “watchful waiting”,  for patients with localized prostate cancer.  See e.g. “Active Surveillance Gains Prominence’” etc.,  http://www.medscape.com/viewarticle/715129 , (Medscape Medical News, January 14, 2010).  For those of you not familiar with the term, “active surveillance” involves closely monitoring a patient’s condition but withholding treatment until symptoms appear or change.  For the first time, rather than offering AS as just an option for patients with low-grade PC, the NCCN  guidelines mandated this approach.  Of course they defined whom they consider  a “low-grade” patient, and who fits into a new category called “very low-grade”.  As many as 40% of men currently diagnosed would fall into one of these groups.

As it stands now, 90% of men diagnosed with localized prostate cancer choose invasive treatments, mostly robotic surgery.  But there is a controversy about this.  The issue is whether the potential side effects, such as impotence and incontinence, are worth the limited benefit of surgery for low-grade PC.  This subject has recently been hotly debated in the mainstream media (NYT, WSJ, etc.) and among the “punditry”, and it is worthwhile familiarizing yourself with this controversy.

You should understand that one reason newly diagnosed prostate cancer patients are often directed toward surgery is that the first doctor they confer with is almost certain to be a a urologist.  Urologists are trained as surgeons, so they are more likely to push the patient toward surgery.  Most doctors are biased toward their own specialties.

If you are a man newly diagnosed with localized PC I suggest you be street-smart and look into all the available treatments — there are several.  And find out whether you would be a good candidate for active surveillance.  Finding a doctor to supervise AS might be a little difficult, but it’s possible.  MSKCC, in New York, for example, has an AS program.

[I am giving you a preview of a very important article by the New York Times chief science writer, Gina Kolata, which will appear in tomorrow's paper.  I hope this will add to my "street cred", as I've been saying these same things for years now (just search "robot" on this blog).  I have excerpted the article, so if you want the full text you can go to: 

http://www.nytimes.com/2010/02/14/health/14robot.html]

Though Results Are Unproved, Robotic Surgery Wins Converts

By Gina Kolata, February 14, 2010

At age 42, Dr. Jeffrey A. Cadeddu felt like a dinosaur in urologic surgery. He was trained to take out cancerous prostates the traditional laparoscopic way: making small incisions in the abdomen and inserting tools with his own hands to slice out the organ.  

But now, patient after patient was walking away. They did not want that kind of surgery. They wanted surgery by a robot, controlled by a physician not necessarily even in the operating room, face buried in a console, working the robot’s arms with remote controls.

“Patients interview you,” said Dr. Cadeddu, a urologist at the University of Texas Southwestern Medical Center at Dallas. “They say: ‘Do you use the robot? O.K., well, thank you.’ ” And they leave.

On one level, robot-assisted surgery makes sense. A robot’s slender arms can reach places human hands cannot, and robot-assisted surgery is spreading to other areas of medicine.

But robot-assisted prostate surgery costs more — about $1,500 to $2,000 more per patient. And it is not clear whether its outcomes are better, worse or the same.

One large national study, which compared outcomes among Medicare patients, indicated that surgery with a robot might lead to fewer in-hospital complications, but that it might also lead to more impotence and incontinence. But the study included conventional laparoscopy patients among the ones who had robot-assisted surgery, making it difficult to assess its conclusions.

It is also not known whether robot-assisted prostate surgery gives better, worse or equivalent long-term cancer control than the traditional methods, either with a four-inch incision or with smaller incisions and a laparoscope. And researchers know of no large studies planned or under way.

Meanwhile, marketing has moved into the breach, with hospitals and surgeons advertising their services with claims that make critics raise their eyebrows. For example, surgeons in private practice at the New Jersey Center for Prostate Cancer and Urology advertise on their Web site that robot-assisted surgery provides “cancer cure equally as well as traditional prostate surgery” and “significantly improved urinary control.”  . . .

Last year, 73,000 American men — 86 percent of the 85,000 who had prostate cancer surgery — had robot-assisted operations, according to the robot’s maker, Intuitive Surgical, the only official source of such data. Eight years ago there were fewer than 5,000, Intuitive says . . .

Medical researchers say the robot situation is emblematic of a more general issue. New technology has sometimes led to big advances, which can justify extra costs. But often, technology spreads long before investigators know whether it is worthwhile.

With drugs, the Food and Drug Administration requires extensive tests to determine safety and efficacy. But surgeons are free to innovate, and few would argue that surgery can or should be held to the same standards as drugs. Still, a situation like robot-assisted surgery illustrates how patients may end up making what can be life-changing decisions based on little more than assertive marketing or the personal prejudices of their surgeon.

“There is no question there is a lot of marketing hype,” said Dr. Gerald L. Andriole Jr., chief of urologic surgery at Washington University. Dr. Andriole does laparoscopic prostate surgery, and although he tried the robot, he went back to the old ways.

“I just think that in this particular instance, with this particular robot,” he said, “there hasn’t been a quantum leap in anything.” . . .

Dr. Michael J. Barry, a professor of medicine at Massachusetts General Hospital in Boston, said that once a hospital invests in a robot — $1.39 million for the machine and $140,000 a year for the service contract, according to Intuitive — it has an incentive to use it. Doctors and patients become passionate advocates, assuming that newer means better.

“Doctors and medical centers advertise it, and patients demand it,” Dr. Barry said, creating a “folie a deux.” . . .

In contrast, the national study of Medicare patients from 2003 to 2007, by Dr. Jim C. Hu of Brigham and Women’s Hospital in Boston, included 6,899 men who had surgery with four-inch incisions and 1,938 who had laparoscopic surgery, many with a robot.

The study was not ideal — patients were not randomly assigned to have one type of surgery or another, and laparoscopic operations done without a robot were included with the robot-assisted ones because Medicare did not distinguish between the two. But it is the only large national study that compares what is thought to be a largely robot-assisted surgery group with a group that did not have a robot.

The paper, published last October in The Journal of the American Medical Association, found that laparoscopic surgery patients had shorter hospital stays, lower transfusion rates and fewer respiratory and surgical complications. But they also had more incontinence and impotence.

It is not known whether the extra costs of robot-assisted surgery are balanced by lower costs for shorter hospital stays and fewer surgical complications. . . .

“What happens is that if you take leading experts, whether they do open or robotic, they are going to get good results,” said Dr. Herbert Lepor of New York University, who has done more than 4,000 traditional open prostatectomies.

“I say robotic surgery has to be better to justify its learning curve,” Dr. Lepor said, “to justify its unknown cancer control, to justify its increased cost.” . . .

“The message for patients is not to assume that newer is better,” Dr. Barry said. Measures like the number of operations a surgeon has done “still matter a lot,” he said.

Dr. Cadeddu, though, said that sort of message is falling on deaf ears. Patients want the robot. So Dr. Cadeddu has now begun offering robot-assisted surgery to those who want it.

“The battle is lost,” Dr. Cadeddu added. “Marketing is driving the case here.”

 

[caption id="attachment_1938" align="alignleft" width="600" caption="Upper West Side with Museum of Natural History (center)"][/caption]

I’m almost afraid to post because I feel like a stranger to my own blog.  I haven’t written anything lately because so many bad things have happened to me, I feel like I’ve got an emotional concussion!  It’s hard to think, let alone write, when you’re in shock.  Somehow, my uber-successful brother-in-law was diagnosed with ALS (Lou Gehrig’s disease) and my mother, who was discussing politics and art films with me a year-and-a-half ago, doesn’t know who I am.   But things have been holding steady on the prostate cancer front, so I’m grateful for that.  Sloan-Kettering asked our permission to put hubby in their “Survivorship Program”.  This basically means that he is being followed by a nurse-practitioner instead of a radiation oncologist, which I think is a good use of resources.  Dear husb had a good PSA a few months ago and doesn’t have to go back for a year.  Hooray!

But I can’t stay away from PC World altogether, so I’ve been reading the news and checking into the online forums.  I hope to resume posting soon.

On the plus side, we moved to a new apartment last week which has some nice views of the “hood”. I am adding some pictures I took from my new home. Top pic shows the San Remo apartments on the left, home to many celebs. At right is midtown Manhattan with its tall buildings. The second pic shows the Museum of Natural History (with the turret) in the center. Now that it’s in my backyard, there’s no excuse not to go!

Leah