Happy Holidays

Happy Holidays from Prostate Oncology Specialists.

Partners

BY RALPH BLUM

When your partner is diagnosed with prostate cancer you will undoubtedly experience a tidal wave of emotions, including the devastating fear that he might die. At the same time as you are trying to get a hold on your own fears, you also want to support and reassure your partner—who is struggling with the same shock and fear. It’s a tough act to balance, and it’s only too easy to repress or ignore your own feelings and needs.                                          

Often, it seems, men are more intimidated by health problems than women are, and when your partner is first diagnosed with prostate cancer you may find that it is up to you to ask the important questions in the doctor’s office while your partner sits there in apparent—usually temporary--shock. Moreover most men are conditioned not to talk about their fears and anxieties, and you may fall into the trap of struggling to remain upbeat, of hiding your own fears from him. While it is helpful to be as positive as you can, it is equally helpful to encourage him to express his feelings, and to talk openly together about his concerns that the cancer treatment is going to affect your relationship. One of his main fears will be of becoming impotent. It is not easy for men to understand that there is more to intimacy than erections.

There are many ways in which you can help your partner, in addition to giving him your love and support as he decides on his best treatment option. You can help him by learning everything you can about the disease and the various treatments so that you can discuss with him the sensitive issues and side effects involved. You can help him with other choices, such as choosing which doctor will perform his treatment. And you can help by driving him to treatments, picking up his medications at the pharmacy, and by keeping track of all his test results, x-rays and medical records, so that if the need arises to consult another doctor, he will have everything ready to take with him.

However, it is vital that you not neglect your own health (which it’s very easy to do!) or give up your own life and center everything around your partner and the cancer. Above all, take time out from thinking about the disease. Go out to dinner and to movies with your partner. Take weekends off and travel to favorite haunts. Enjoy, as much as possible the activities you have always liked to share. Indeed, the vow is “In sickness and in health.” But refuse to permit your whole live be held hostage to this condition.

It would be presumptuous of me to even attempt to address the real loneliness and frustration women feel from the lack of sex. My partner, Jeanne, however, is fierce on the subject.

“The women at the PCRI Conference all complained about it,” she told me. “But they feel they cannot reveal their feelings to a husband who is, I quote, ‘dealing with cancer, for God’s sake!’

When I asked Jeanne what she’d want to tell men, she said, “Curl up and just snuggle. No attempt at sex. Just relax. Hold each other, and listen as you begin to breath together. Try spooning. Meaning, lie curled up tummy to back. It’s called ‘the Embrace Meditation. . .’ There, that’s a start.”

I asked her, “Anything else you’d want to say to all the partners?”

“Yes. Let him know that helping him will actually help you to feel better, more confident, even more safe.”

As I was writing this, I remembered something that really helped me, something Jeanne told me right at the beginning, when I was first diagnosed, “Here’s what I feel,” she said.  “We both have prostate cancer. We’re in this together.”

Climactauria

BY MARK SCHOLZ, MD

Some men—unfortunately, only a minority—are genuinely pleased after prostate surgery.  Their erections are maintained, cancer is gone and they don’t leak urine. The excitement of surviving an operation with one’s manhood intact often leads to euphoria with repeated public declarations about the wonders of surgery:  “Come on in,” they say, “The water’s fine!”

In reality, there is no “good” treatment for prostate cancer. Sure, some men can luck out and are happy to talk about it. But more frequently, when men are asked how they are doing after surgery, they say they are fine, even when they are not. No man likes going public about his lost sexuality.  And there is little value in bemoaning what can’t be changed.

So, does it make any difference which treatment is chosen?  Is radiation any better?

Here is my estimate of the latest stats for a 65 year old with Intermediate-Risk prostate cancer with normal sexual and urinary function treated with either state-of-the-art surgery or radiation therapy administered by a world class surgeon or radiation therapist:

	Surgery	Radiation
Cure Rate	80%	85%
Impotence	50%	35%
Incontinence	8%	1%
Urinary Bother	2%	25%
Rectal Burn	0%	1%
Climactauria	12%	0%

As you can see, radiation has its own problems, particularly with what is termed, “urinary bother.” Bother can mean urgency, a need to go RIGHT NOW.  It can mean frequency, making multiple trips to the bathroom throughout the day. It can mean nocturia, having to urinate frequently at night.  Rectal burns are even more disastrous with unremitting pain, bleeding and leakage.  Fortunately this healthcare disaster is quite rare.

What is climactauria?  Ejaculating urine instead of semen.  One of the world’s top surgeons, Herbert Lepor from New York University reported on the incidence of climactauria in 1,459 men he treated with radical prostatectomy between 2001 to 2007. The percentage of men reporting any degree of climactauria 24 months after surgery was 36%.  The percentage reporting severe climactauria after 24 months was 12%. The stats in less eminent surgeons are probably worse.

Men contemplating surgery or radiation need to review the stats.  Both surgery and radiation are unappealing.  However, to my way of thinking, if a man’s conditionsdictates a need for treatment, skillful radiation appears less daunting than skillful surgery.

Calling All 40 Year Old Black Men

BY RALPH BLUM

According to the National Cancer Institute, African Americans may have the highest rates of prostate cancer in the world. Furthermore, black men often develop the disease at a younger age than white men, and the cancer is often more aggressive.

Although the National Institute of Health is conducting studies to determine why this is the case, the reason for this disparity between African American and Caucasian men is complex and not yet clear. In part, it may reflect unequal access to quality health care because they tend to be diagnosed at more advanced stages, i.e., they wait till it’s too late.

While all African American men are at significantly higher risk, black men with an immediate family member who had prostate cancer have a one in three chance of developing the disease. The risk rises to 83% when two immediate family members have the disease, and with three family members, the risk mounts to 97%.

So it is absolutely vital to get yourself checked out before symptoms appear that indicate the presence of prostate cancer. Symptoms include: the need to urinate frequently (especially at night); difficult, painful, burning or bloody urination; painful ejaculation; frequent pain or stiffness in the lower back, hips, or upper thighs. Once symptoms appear, it means that the cancer has already reached a more advanced stage and chances of survival are considerably reduced.

In June 2003, Nation of Islam leader, the Honorable Minister Louis Farrakhan, announced the launch of his Prostate Cancer Foundation  (LFPCF). Minister Farrakhan, himself a survivor of prostate cancer, apparently saw the high death rate among African American men diagnosed with the disease as a call to action to the black community, and the strongest persuasion for early screening. “If that is not motivation to save your life,” he said, “then nothing can motivate you.”

Despite the lack of conclusive study results, one thing is certain: early annual screening for prostate cancer is critical for African American men and should begin at age forty to forty-five.

Aside from financial concerns, another factor that deters many African American men from getting regular screening for prostate cancer, is that it involves not only the PSA blood test but also the primitive yet effective doctor-inserting-finger-up-your-anus technique known as the Digital Rectal Exam (DRE) to which black men have a serious aversion. Minister Farrakhan put it rather more delicately: “As men, we are difficult in terms of allowing ourselves to be tested.” And that is a problem.

A word of caution: When I alerted two concerned black friends that “free annual pre-screening, educational materials and medical referrals were available” via the Louis Farrakhan Prostate Cancer Foundation in Chicago, they called the number provided on the LFPCF website, and got a Toyota dealership in Houston. It appears that the website has not been updated since 2003.

When I checked with a black minister who is concerned about prostate cancer in his community, he said, “The Rev. Farrakhan sometimes fails to follow through. Usually, it’s a question of funds. The African American community would welcome hearing words of encouragement from black authority figures like Oprah, Tavis Smiley and Rev. Jesse Jackson.”

Meanwhile, it is left to local groups to motive men to get tested. According to Ron Brewington, Associate Professor of Broadcasting Journalism at Santa Monica College, the Trinity Baptist Church on

Jefferson Boulevard

in Los Angeles does provide screenings. Addressing a group of men at the church recently, Brewington said, “I’d rather have a finger up my butt than have them throw dirt in my face. The fact that you’re here tells me you want to live. I applaud each of you.”

Deaths from prostate cancer in the United States have declined, primarily because more than 90 percent of prostate cancers are diagnosed at an early stage However, African American men are still more than twice as likely as white men to die of the disease largely because they continue to be diagnosed at more advanced stages. So if you are a 40 year old African American man, consider this a three-alarm wake-up call. 

First Impressions Can Really Harm You

BY MARK SCHOLZ, MD

The human mind is constantly, searching, analyzing and processing our environs, attempting to make sense of the fluidly shifting situations that surround us. This mental process is healthy, designed to keep us in touch with reality.  “First impressions” are a good example of the powerful and rapid insights provided by these formidable processors we call our brains.  However, while first impressions are for the most part quite accurate, we all have learned at some point that they can also be misleading.

After interviewing thousands of newly-diagnosed prostate cancer patients, I have found that the first impressions of most patients about prostate cancer are almost always wrong.  Why?  There are several reasons.

First, there is no single type of prostate cancer. It is a condition that behaves quite variably. Therefore, it is hard to get your brain around the idea “I have prostate cancer,” and sum it up as a single sound-bite. Even though the word “cancer” would seem to be saying it all, the analogy of the three blind men touching different parts of the elephant works well here.

Second, despite the many variations of prostate cancer, none of these variations are similar to any other type of cancer. You cannot simply point to some other disease and say, “Just think of _____ . . .” (fill in some another cancer type here) and you’ve got it.  Prostate cancer is, arguably, unique among cancers. It has an exceptionally slow growth rate, a pattern of spread that uniquely spares critical organs like brain, lung and liver; it responds to a distinctive method of treatment, hormonal therapy, which commonly induces remission lasting more than ten years.  Moreover, prostate cancer is the only cancer that can be monitored with a one-of-a-kind blood test called PSA.

Third, while surgery is probably the best treatment for most other types of cancers, it is probably the worst (with occasional exceptions) for prostate cancer. And strangest of all, prostate cancer is the only common type of cancer that is exclusively managed by surgeons, rather than by medical oncologists).

As a result of all these one-of-a-kind characteristics, the way that men with newly-diagnosed prostate cancer manage their first impressions has a major impact on the treatment they will receive. Initially, men logically assume that prostate cancer is imminently life-threatening, just like other types of cancer. And for most cancers, surgery is best way to go about getting cured. 

The majority of urologists still tend to repeat their favorite mantra—“Surgery is the Gold Standard”—and to urge men to undergo ill-advised surgery. However though advances in seed implant and radiation therapy technology, the mantra is now outdated.  Newly-diagnosed men can avoid any regrets if they take time and truly investigate their options. “Don’t Rush!” should be their mantra. Men need time to calm their over-stimulated minds, time to regain their emotional bearings, so they can do the research necessary to make an informed decision.

How to Find the Right Specialist

BY RALPH BLUM

When your primary care physician suspects that you have prostate cancer, your first, and arguably most important task, is to find a specialist who is skilled at diagnosing and treating the disease, and with whom you have a good rapport. Meaning, you feel comfortable with that doctor.

Usually your primary care doctor will refer you to an urologist for a definite diagnosis, but before you take this step you need to be aware that all urologists are not created equal. Most urologists—aka surgeons— have a medical practice at least half of which involves treating problems like impotence, incontinence, infections, and kidney stones. The majority perform only a handful of prostate surgeries annually. So ask your primary care doctor if he can recommend an experienced urologist in your area who specializes in treating urologic cancers.

If you are uncertain about your doctor’s referral or want to go beyond your local area to find a urological specialist—perhaps in a larger hospital or major medical center—just remember that you have time. It’s a good idea to take several weeks to network with friends who’ve been through it and support groups.

By all means, do research on the Internet. Make sure that you select a specialist with extensive experience. By consulting “Dr. Google” you can locate the best prostate cancer web sites and doctors. And under the heading “Resources” on the Prostate Cancer Research Institute web site, pcri.org you will see a section called “Finding expert physicians.”

The kind of urologists you want will thoroughly discuss all appropriate treatment options with you—radiation, seed implants, different kinds of surgery available—in an even-handed manner. If board certified, they are obligated by law to do so. And if, for example, you express interest in radiation, they will refer you to a radiation therapist to discuss that option.  But unless your age or physical condition make it inappropriate, most urologists likely to recommend surgery. Surgery is, after all, their specialty.

Regarding radiation, the latest studies (although not perfect) indicate that for most men, either permanently implanted radioactive seeds or intensity modulated radiation therapy (IMRT) are at least as effective as surgery, with similar cure rates, and are, in most cases, performed without the risks associated with a major surgical procedure.

You should also, if you can locate one, consult with a medical oncologist who specializes in treating prostate cancer. Not being directly involved in either surgery or radiation, these specialists are not as likely to have any bias in their recommendation.

Whichever specialist you consult there are a few basic questions it’s a good idea to ask:

•  How long have you been treating prostate cancer patients with this treatment?

•  How many prostate patients have you treated? How many radical prostatectomies and robotic procedures have you performed?

•  Why do you recommend this particular treatment for me?

•  What are the possible side effects of this treatment?

•  What are your success rates for patients with a diagnosis similar to mine?

The following questions which, since they all relate to surgery, apply only to a urologist:

•  How many prostatectomies do you perform each year?
•  What is your success rate with the preservation of sexual potency
•  What about urinary continence?  How frequent is it? How do you deal with it?

•  Do you perform nerve-sparing surgery? (Nowadays most surgeons do.)

•  Do you perform robotic surgery? If so, how many robotic procedures have you performed to date? (Anywhere up to 150 procedures, and you are still part of a surgeon’s learning curve.)

•  What percentage of your patients are approximately my age?

This last question is important because if you are in your 50s and most of the doctor’s patients have been over 70, he may be less knowledgeable about preserving your potency and continence than a doctor who treats more men of your age.

Choosing the right specialist is a decision that will have a significant effect the rest of your life. So I repeat, take your time. And make sure that the doctor you choose gives you confidence that the treatment he recommends will be successful.

MDV-3100—An Embarrassment of Blessings

BY MARK SCHOLZ

Every day in the office, as a practicing prostate oncologist, I confront serious problems:  PSA levels that are rising, treatments causing too many side effects, patients desperately worried about their future. And sometimes, given our limited tools, the solutions we can offer are only partial. However, every time the FDA approves a new treatment there is an excitement akin to opening gifts on Christmas morning. All of a sudden we have a shiny new tool in the tool chest to help us do a better job.

I’ve repeatedly gone on record criticizing the FDA for the inflexible format they use to approve any new drug.  They insist on survival as the only important measure of effectiveness. There has to be a better way to study new drugs than giving a placebo—an inert substance containing no active ingredient—to unfortunate people who already have a life-threatening illness. But this is the format our government demands—forcing pharmaceutical companies to prove that their new anti-cancer drug works by comparing them with sugar pills. And so the human sacrifices continue.

However, back to the good news, the spirit of Christmas morning. Medivation, the manufacturer of MDV-3100, a new drug that is estimated to be twenty times more potent than Casodex, recently reported a significant survival advantage in their study comparing MDV to  the of unfortunate souls who got placebos. In other words, Medivation cleanly jumped over the bar set by the FDA. Since MDV-3100 was not associated with any unexpected side effects, the FDA will be essentially forced to hold up its end of the bargain and release it soon for commercial use.

Some are saying that MDV is just a copycat of Zytiga, one more expensive testosterone blocking pill in an already busy marketplace. I disagree completely:

1.       Since MDV has few side effects, it can be easily combined with other popular treatments like Provenge and Taxotere.

2.       Since the mechanism of testosterone blockade is completely different from Zytiga, it’s possibly that the anticancer effects of Zytiga and MDV will multiplied if they are given together.

3.       Due to its ease of use, it will be popular with the urologists, the surgeons who are charged with managing most men with prostate cancer.

My “Christmases” seem to get better every year.  Last year the tool chest was expanded to include Zytiga, Provenge and Jevtana. And there are also some amazing new drugs waiting in the wings—Ipilimumab, Dasatinib, XL-184, Revlimid and more. We finally seem to be entering a new, hopeful era for prostate oncologists—and, most important, for their patients.

In Praise of Life in the Libido Free Zone

This summary is not available. Please click here to view the post.

Hormone Blockade Effectively Controls Prostate Cancer

BY MARK SCHOLZ

Ralph Blum, my coauthor of Invasion of the Prostate Snatchers, monitored his prostate cancer for 14 years before starting treatment in 2004.  Prior to meeting me, Ralph had been living in Hawaii and managing his own case.  However, when his PSA rose above 10 he came to Marina del Rey for a consult. I advised him to start treatment with either IMRT or Testosterone Inactivating Pharmaceuticals (TIP).  Ralph, after considerable uncertainty and discussion, embarked on TIP for 12 months.  So far he has required no additional therapy.

At Prostate Oncology Specialists, back in the 1990s, when radiation was more prone to burn than cure, we commonly treated men with TIP followed by active surveillance. Our first published report on the feasibility of intermittent TIP was presented at the annual meeting of the American Society of Clinical Oncology in 1997¹ and later published in The Oncologist in 2000.² In 2006 we updated our experience with intermittent TIP in the Journal of Urology and reported that Proscar (finasteride) extends the time-off period” after TIP is stopped.³

This December Clinical Genitourinary Cancer will publish our long-term outcome of 73 men treated at Prostate Oncology Specialists with TIP and monitored for a median of 12 years after treatment. A preprint of the article is available on our "publication" webpage found at prostateoncology.com. Here are the take-home messages we reported in the article about using TIP as first line treatment:

1.     Almost a third, 21 men, have not required any further treatment.

2.     One third, 24 men, have kept their PSA less than 5 with further cycles of TIP. 

3.     After an average of 5.5 years, slightly more than a third, 28 men, underwent delayed local therapy (surgery, seeds, IMRT or cryotherapy). After an additional six years observation, three men have developed a rising PSA (PSA relapse).

4.     Local treatment was administered much more frequently to younger men (whose testosterone recovered more quickly when TIP was stopped)—and to men with D’Amico High-Risk category disease (PSA > 20 or Gleason 8,9,10)—compared to older men and to men who were in the D’Amico Low-Risk or Intermediate-Risk categories.

5.     Mortality from prostate cancer was low.  After twelve years only three men (4%) died of prostate cancer, and none of the remaining 70 men developed metastatic disease. This result compares favorably to a group of 350 men with similar-stage prostate cancer treated with immediate surgery whose ten-year outcome was reported in the New England Journal of Medicine in 2005.⁴ In this group fifteen percent developed metastases and an additional ten percent died of prostate cancer. 

Unfortunately TIP, like all forms of prostate cancer treatment, is associated with a number of undesirable side effects including weight gain, muscle weakness, absent sex drive and hot flashes. However, for most men these side effects are either treatable⁵ or reversible.  Even so, as we have reported in the summary above, many men treated with TIP will, at some point, require further treatment, either with additional TIP or some form of local therapy.

All this not withstanding, in my mind there is no doubt that Testosterone Inactivating Pharmaceuticals (TIP), when appropriate and applied in a timely manner, acts effectively to control prostate cancer.

References:  Copies of all the articles referenced in this blog are available at our webpage  http://prostateoncology.com/education/publications

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Dispatches from the PSA Front: What You Don’t Know May Be Good for You

RALPH BLUM

There is a growing sense that those who are medically challenged—in this case the challenge being prostate cancer—are just another population of “consumers” in Big Pharma’s drive to capture market share.

                                   

Boil it down and the issue here can be stated in just three words: overtreatment by doctors. It is ironic that the first serious warning came from Thomas Stamey, M.D., formerly Chief of Urology at Stanford University, the man who developed the PSA blood test. Stamey’s dire prediction should be part of the awareness of every urologist and every newly diagnosed man:

“I believe that when the final chapters of this disease are written, it will prove that never in the history of oncology, will so many men have been so over-treated for one disease.”

One rarely sees Stamey’s warning reprinted. Why not? “Bad for business,” one urologist admitted to us.

           

However, concern for this situation is expanding rapidly. An October 5, 2011 New York Times article by Shannon Brownlee and Jeanne Lenzer quoted one of the major figures in the field, Otis Brawley, currently Chief Medical and Scientific Officer of the American Cancer Society, who the authors describe as “the public face of the cancer establishment. Brawley has become the target for attacks because of “his blunt and very public skepticism about the routine use of the prostate-specific antigen, or PSA, to screen men for early prostate cancer.” Brawley’s position is unequivocal and disturbing to the medical establishment:

“I’m not against prostate-cancer screening. I’m against lying to men. I’m against exaggerating the evidence to get men to get screened. We should tell people what we know, what we don’t know and what we simply believe.”

Otis Brawley, who is also a professor of oncology and epidemiology at Emory University, is foremost among a growing number of urologists and oncologists who recognize the ethical obligation to make certain that men grasp the nature of the radical “downstream decisions” they might have to face as a result of early screening—or any screening at all.                                                       

The newly identified risk of knowing too much is redressed when men are given balanced information about both the pros and cons of P.S.A. testing. Studies have found that well-informed men are less likely to opt for screening than men who were merely offered the test. “If a man understands the risks and benefits and does not want to be screened, that decision should be supported,” Brawley says. “But just saying that gets you in trouble.”

Well, that is changing, and changing fast. Since we posted our blog, “Who’s Afraid of a PSA?” the word is out. As I write this blog, I am receiving calls referring me to the latest Oncology Today, and also suggesting I Google: “Breaking News: PSA tests no longer generally recommended. “

It appears that we are entering a time when PSA testing is no longer done automatically as part of a doctor visit or a check-up with your urologist. A time when men will receive explanations as to the necessity for testing—and ask for explanations if they are not forthcoming. A time when there will be more transparency regarding the possible adverse side effects of PSA testing, the most egregious side effect being unnecessary aggressive treatment.

And meanwhile, hats off to Tom Stamey and Otis Brawley!

Discontinue PSA Screening?

BY MARK SCHOLZ

The recent task force’s recommendation* to discontinue PSA screening has shocked the prostate cancer community.  Yet with radical prostatectomy rates up 50% over the last five years their desire to apply the brakes is understandable. 

No one disputes that PSA testing leads to earlier detection of prostate cancer. In fact, one could argue that the problem with PSA is that it works too well, diagnosing the disease years before we even need to know about it. Attention, therefore, needs to be refocused on how doctors respond to an elevated PSA rather than recommending the end of PSA testing altogether.

Presently, at the first sign of PSA elevation doctors urge immediate prostate biopsy, taking a dozen needle samples of the gland through the rectum. More than a million men undergo this unpleasant procedure annually, risking the possibility of serious infections, bleeding and temporary impotence.

Rather than triggering an immediate biopsy, an elevated PSA should prompt additional testing with urine tests and scans along with thorough patient education about the risks of biopsy. 

Moreover, this would be a good time to educate the medical community about how to judiciously use the information PSA provides. We can’t forget the fact that 30,000 men die annually from advanced prostate cancer, and that twice that many are living and suffering from advanced disease including metastatic disease in their bones. We also need to remain mindful that studies clearly show that early diagnosis leading to the selective use of appropriate treatment reduces mortality rates.

*The public may submit comments to the task force through November 8.

Support Groups: Pluses and Minuses

BY RALPH BLUM

Most men are uncomfortable talking openly about sensitive issues—painful emotional stuff like their fear of incontinence, or of never having another erection—and many feel that support groups, where such things are talked about, are not for them. However, my own experience in the medical minefield of prostate cancer taught me that finding the right support group is one of the best things you can do for yourself following a prostate cancer diagnosis.

                                                                       

A good support group provides you with an opportunity to discover how other men have resolved the challenges and coped with fears that you are currently facing—men who have actually lived through surgery, radiation, cryotherapy or hormone blockade. What’s more, your local support group is often your best resource for recommendations and referrals, for learning the names of the most experienced (and best liked) prostate specialists in your area.    

           

Often you will find that the volunteer leaders of support groups are unique individuals who, while waging their own battles against prostate cancer, have dedicated countless hours to research, and who willingly share their experiences with those just beginning the journey. Some groups have expert speakers—doctors, social workers, psychologists specializing in intimacy issues that impact both men and their spouses—who can offer helpful information and can answer questions from first hand experiences that relate directly to your problems and concerns.

                                                                                                           

However, not all support groups are created equal. A group’s effectiveness depends a great deal on its members. Are they mostly upbeat and willing to share their experiences? Do they mainly discuss possible solutions to problems? Do you feel that you can learn something from them? Or do the members mostly complain? Is there an atmosphere of doom-and-gloom? You don’t want to leave feeling more depressed than when you went into the meeting!

                                                           

Another thing to keep in mind is that every support groups has members in different stages of the disease, ranging from localized and curable, to very advanced. If you have never been to a support group before, you could become frightened or depressed by what you hear. If this is the case, either you are in the wrong group, or you may be simply be more comfortable with an internet site like Prostate Cancer Blue Community website http://www.prcibc.org/ that connects you with other men in your same category of prostate cancer.    

                                                                                                                                                   

In most states you can find support groups that provide treatment advice as well as emotional support. The American Cancer Society’s Man to Man chapters are nationwide; most of them welcome spouses, a few prefer that women and men meet separately. To locate the Man to Man chapter nearest you, contact the American Cancer Society at 800-227-2345. You can also go to http://www.cancer.org/ for their online prostate cancer support group. Other excellent resources include Male Care, “Men fighting prostate cancer together” (http://www.malecare.com/), Michael Milken’s Prostate Cancer Foundation (http://www.pcf.org/)  and USTOO International (http://www.ustoo.org/).

                                                           

So even if you are one of those guys who look down on support groups as crutches for sissies, I suggest that you at least give your local group a try. At the very least, you will be able to query a number of men about their experiences with doctors in your community. At best you may develop, as I did, very special prostate cancer friendships with men you can call at any time of the day or night, men who understand what you’re going through. And if you’re lucky, you might run across a uniquely knowledgeable group leader who can give you exactly the information you need to make the right treatment decision.                                                                                                                     

No doubt about it. There is strength in numbers.

FDA Roulette

BY MARK SCHOLZ

The notoriously stingy and demanding FDA gave the go ahead for two new treatments for prostate cancer in 2010.  New approvals are rare because of the hundreds of millions of dollars required to undertake the type of studies that the FDA requires. The FDA wants studies that randomly allocate men into two comparison groups. One group gets the new medicine. The other group gets an ineffective fake called a placebo. FDA approval comes when men getting the new medicine live longer than those given the placebo.

Finding volunteers willing to participate in these types of studies is difficult. The men know there is a 50% chance they will get an ineffective placebo. Who wants to take the chance of getting a sugar pill as their treatment? Even so, some men are so desperate, they sign up, hoping to be among the lucky ones who receive the real McCoy.

These studies often run for years because the study ends when the study participants die from progressive cancer.  To find men willing to participate, the supervising companies that organize and run these studies need contractual relationships with a hundred or more study centers. Just keeping track of all these different patients, at so many different locations, over a period of several years, is in itself very costly.

Provenge is the first FDA approved treatment for prostate cancer that works by strengthening the immune system. Dendreon is the name of the company that has patented a process of harvesting immune cells out of the blood by means of a technique known as “plasmapharesis.” Plasmapharesis is a three hour process similar to dialysis that extracts immune cells from the blood. The harvested cells are then taken to a special laboratory and mixed with substances that enhance their aggressiveness against cancer.  The cells are then re-infused back into the same patient. 

Provenge’s primary appeal is the low incidence of side effects. The treatment, which does not rely on chemotherapy, is so revolutionary that at first the FDA was very skeptical. They dragged their feet for years, forcing the company to run their studies over and over.  Lo and behold, additional studies again demonstrated that Provenge-treated men were 30% more likely to be three years after their treatment with Provenge compared to the men who received a placebo. Dendreon should be commended for patiently persevering time after time when the FDA kept turning them down. Now men with prostate cancer have access to an effective treatment that has very few side effects.

The other new treatment recently approved by the FDA, Jevtana, falls into the more familiar category of chemotherapy.  Jevtana was approved in July 2010 based on a randomized survival study evaluating Jevtana compared to an older, ineffective type of chemotherapy called Mitoxantrone. 755 men were treated with either Jevtana or Mitoxantrone. The survival of men receiving Jevtana was 30% better then the men treated with Mitoxantrone.  

This remarkable achievement took some industry experts by surprise because the participants in the trial had all been treated previously and become resistant to another type of chemotherapy called Taxotere.  Historically, resistance to Taxotere has been a bad sign predicting resistance to all types of chemotherapy. Jevtana, unlike Provenge has the traditional side effects of chemotherapy such as tiredness, hair loss and increased risk for infection. Even so, reversing cancer in men with Taxotere-resistant disease is quite an accomplishment. 

The FDA finally agrees that both Jevtana and Provenge are proven to make men live longer. Studies are ongoing with these newly-approved medicines to see if combining them with other drugs can further enhance their effectiveness. In the meantime, men with prostate cancer need to be aware that these new and effective tools are available.        

Making Sense of the TNM Staging System

BY RALPH BLUM

In my last Blog I described the Gleason grading system, which urologists use to establish the aggressiveness of your cancer based on the pathologist’s analysis of your biopsy. If you are requesting copies of all your medical records (as you should) you may come across a tumor  staging code called the Tumor Node Metastasis (TNM) staging system.  This code is used to describe to doctors information about whether your prostate cancer is localized, regional, or advanced.

The letter “T” in the TNM system refers to the tumor.  Your doctor “stages” the tumor based on how big the tumor nodule feels when he does a digital rectal examination.  For example, information about size, on whether it is in one or both sides of the prostate, and on whether it has gone outside the prostate is communicated by the four categories—T1, T2, T3, and T4.

Subtypes of T1 (T1, T1a, T1b, T1c) or T2 (T2, T2a, T2b, T2c) refer to localized cancer, meaning the cancer has not spread beyond the prostate. Any of the T3 subtypes (T3a, T3b) refer to regional cancer, which means that the cancer extends just outside the prostate and may have gone into the seminal vesicles. T4 has only one category, and refers to cancer that has spread to the bladder and/or to other adjacent areas of the pelvis.

The “N” in the TNM code refers to whether the cancer has spread to the lymph nodes in the pelvis. N0 means it has not spread to the pelvic nodes; N1 indicates that it has spread. If the cancer has spread to the pelvic nodes, it is more likely to move beyond the nodes and into other parts of the body, making it harder to treat.

The “M” in the TNM staging system refers to whether the tumor has spread or metastasized beyond the lymph nodes in the pelvis. M0 means zero metastasis. M1a means the cancer has spread into the lymph nodes beyond the pelvic area. M1b refers to cancer that has spread to the bones. M1c means the cancer has spread beyond the lymph nodes and bones to other parts of the body.

At the initial staging of the cancer, your urologist first performs a digital rectal examination to determine the presence and status of the tumor. If he determines that the cancer is at a very low level perhaps he will not order further tests. But if he suspects that the cancer may have spread outside the prostate gland, he will order a CT scan, an MRI, or bone scan. Cautious or conservative doctors are likely to order all three of these imaging tests regardless of their findings in the DRE. So don’t assume that you may have advanced cancer just because your doctor sends you for a CT scan or MRI.

I realize that all this information is somewhat confusing (It begins to sound like loony runaway variations on the British Secret Service MI5, MI6, SIS and Lord knows what else). However, the fact remains that, by grouping your PSA level, Gleason grade, and TNM stage, your urologist can determine your prostate cancer’s risk level and advise you on your best treatment options.

Bottom line, the more you know the better.  Yours is really the decision that counts so you have to understand what is going on.  You can obtain more information about staging on the PCRI's blue community website at www.pcribc.org.

Whew, It’s Over!

BY MARK SCHOLZ

I just passed my annual stress test—the Prostate Cancer Research Institute (PCRI) conference. Lots of work, but certainly worth it--we had over 700 attendees from 41 states and 9 countries.  I was proud of all the 20 speakers, and particularly grateful for the contribution of Mark Moyad, MD who did a stellar job moderating.  Dr. Moyad and I reviewed some of the conference highlights on Sunday morning. They include reports on the following:

1. PET scans improve prostate imaging according to Dr. Dusing from Kansas City University and Dr. Kwon from the Mayo Clinic.

2. National Comprehensive Cancer Network (NCCN) guidelines recommend Active Surveillance for Low-Risk prostate cancer according to Dr. Klotz from the University of Toronto.

3. Multiple new chemotherapy combinations and agents—Carboplatin, Avastin, Xeloda, Custersin and Jevtana—are active against advanced prostate cancer according to Dr. Scholz.

4. Ipilimumab, an new immune treatment from Bristol Myers Squibb can induce dramatic remissions in advanced prostate cancer according to Dr. Kwon from Mayo Clinic.

5. A variety of very promising new agents—MDV-3100, TAK-700, XL-184—are in late stage trials.  Provenge, another new agent that works by stimulating the immune system is already FDA approved according to Charles Drake from Johns Hopkins.

The PCRI also announced at the conference, the launch of the Prostate Cancer Blue Community (PCBC); a web based prostate cancer community that is overseen by the PCRI helpline.  The PCBC has discussion forums about the conference and the different types of prostate cancer that we have broken down into Shades of Blue so that men can connect with other men in their same category of prostate cancer. The PCBC can be accessed at www.pcribc.org.

“Who’s On First?” Making Sense of the Gleason Score

BY RALPH BLUM

When you are diagnosed with prostate cancer, you need to understand the grading system that your doctor will use to recommend specific treatments. The grade indicates how aggressive the prostate cancer is, based on the pathologist’s evaluation of cancer cells taken during a biopsy. While all cancer cells look abnormal to a pathologist, low-grade cancers have cells that often look similar to healthy prostate cells. The more aggressive the cancer, the less the cells look like normal prostate cells.

Invented in 1966 by Dr. Donald Gleason, the Gleason grading system is relied on by pathologists worldwide to determine how severe your prostate cancer is. Here’s how it works:

The Gleason system assigns a grade to each of the two largest areas of cancer in the tissue samples from the biopsy. The lowest number on the Gleason grade scale is 1, and the highest is 5. The pathologist examines the biopsied tissue samples to determine where the cancer is the most prominent (the “primary grade”), and where it is next most prominent (the “secondary grade”). Then he assigns one score to the primary grade and one score to the secondary grade. The final Gleason score is the sum of these two grades. So a total score can range from a 2 (1+1) to a 10 (5+5), depending on how distorted the cancer cells look. Obviously, the lower the Gleason score, the better.

Total scores from 2 to 4 are very low on the cancer aggressive scale and, therefore, indicate that the cancer is slow growing and considered low-risk. Total scores from 5 to 6 are mildly aggressive but the cancer is still considered low-risk. A total score of 7 indicates that the cancer is moderately aggressive and considered intermediate-risk. And total scores from 8 to 10 are considered highly aggressive and the cancer is categorized as high-risk.

Hopefully you are still with me, because here comes the tricky part: In order to get clarity on your Gleason score, you need to get a breakdown of the two numbers that make up the total score—the primary grade first, then the secondary grade. The reason for this is that even when total scores are the same, not all Gleason scores are equal.  For instance, if your Gleason is 3+4=7 and your friend’s is 4+3=7, you are actually in slightly better shape than your friend. Here’s why: When the primary grade is 3, it means that the cancer cells have not deteriorated as far as the cancer cells with a primary grade of 4.

One other caveat: It is often advisable to get a second opinion on your biopsy slides, because not all pathologists are equal either. A pathologist at a world-class reference center, such as Stanford, the Mayo Clinic, or Johns Hopkins, should preferably give the second opinion, and most insurance programs will cover the cost.

Together with your PSA and tumor “staging” (more about this in my next blog), the Gleason Score is your doctor’s best shot at determining your prostate cancer’s risk factor and, therefore, your best indicator of appropriate treatment options.