Keeping a Folder of your Medical Records Gearing Up for Your Prostate Cancer Journey (Part 2)

BY RALPH BLUM

It is very important, once you are diagnosed with cancer, to obtain copies of all your medical records, both for your own understanding, and so that you can make copies for the specialists you might want to consult. The following is a list of the reports and test results that you need to keep in your medical folder.

Start by making a chronological log of all your PSA tests with dates, and note in the log any general health changes or treatments that might impact your PSA.

Then obtain the following:

·         A copy of your urologist’s notes that discuss the results of your Digital Rectal Exam (DRE).

·         A copy of your urologist’s Transrectal Ultrasound (TRUS) report that lists the size of your prostate in grams or cc. It may also indicate other findings that are part of your biology.

·         A copy of your Biopsy Pathology Report. This should provide your Gleason Score, how many cores were positive, the extent of disease in the cores, and possibly other important clinical diagnosis information such as the location of the cancer within the prostate gland. It is also wise to retrieve your biopsy slides from the pathologist and send them to a world-class cancer treatment center, such as MD Anderson, Johns Hopkins, or Cedars Sinai, for a second opinion. In fact if you live in a small town or in the country, if possible you should find a urologist at one of the major centers for a consultation before making a treatment decision.

·         Get copies of the written radiology reports for any scans (color Doppler ultrasound, bone, CT, MRI), and get digital copies of the actual scan if available. These are necessary for any future radiologist who will want to compare them with new scans.

·         Lastly, it is advisable to include in your medical folder copies of all information regarding your medical history, including any current (unrelated to the prostate cancer) health problems, even if they seem minor. Also, a printed list of all your medications (along with the dosages) and any supplements you are taking.

If all this seems overwhelming, ask your partner to help you create a medical folder. Finding out that someone you love has been diagnosed with prostate cancer is a devastating blow. Your partner also feels worried and scared and helpless. Having something constructive to do, like organizing your medical information, can help her (or him) obtain some feeling of control over the prostate cancer.

Creating this Medical Records Folder will save you time and anxiety. Much of what you have read here comes from the advice of my writing partner, oncologist Mark Scholz, and can also be found in more detail in the pages of the Prostate Cancer Research Institute (PCRI) Papers and Newsletters.

Potent Treatment for Men with Prostate Cancer

BY MARK SCHOLZ, MD

Every spring the annual meeting of the American Urology Association hosts 10,000 urologists from all over the world for a full week of classes, meetings and presentations on a panoply of urologically related topics: urinary tract infections, kidney stones, bladder cancer, and kidney cancer, prosthetic penile implants, Peyronie’s disease (fixing penises that are crooked) as well as classes on treating penis fractures and penis cancer, just to name a few.

Thousands of abstracts are presented. Hundreds are on the topic of prostate cancer. Unfortunately, much of the “new” information being presented is of limited practical value. Many of the studies are a rehash of information presented at previous meetings. Other abstracts are on esoteric topics such as metabolic studies performed in mice.  Truly evocative studies that impact the day to day management of prostate cancer enough to change the way we treat it are quite rare and to be highly valued. 

Some years, it seems, nothing substantial is presented. This year, however, I came across two presentations of lasting importance, both on the same topic and both arriving at the same conclusion: If you have prostate cancer, and you want to prolong your life, you should be married.  Yes, you heard it right. According to these two new studies, for married men compared to single men, the relative risk of dying from prostate cancer is reduced by 50% to 150%.

In the first study, Dr. Erik Castle compared prostate cancer survival in 91,000 married men to another 24,000 men who were single. All stages of prostate cancer, both early and advanced were included in the study.  Correction factors were used to make allowances for differences in tumor grade, stage, age and race.  The ten-year risk of dying of prostate cancer was 17% in married men and 27% in single men. 

In the second study, Dr. Kenneth Nepple evaluated 3600 men with early-stage prostate cancer treated with surgery.  The risk of dying of prostate cancer within ten years of being diagnosed was more than twice as large in single men (3%) when compared to married men (1.2%).

I’m sure that all of us married men realize the tremendous debt we owe to our wonderful spouses.  Apparently men with prostate cancer need to be doubly thankful.  Without their wives they might not even be alive.

Prostate Cancer? Newly Diagnosed? Gearing Up for Your Journey (Part 1)

BY RALPH BLUM

You’ve just received what sounds and feels like a death threat. So what do you do? What steps do you take? You may have heard all this before. But we all absorb vital information at different rates, in different ways. Blessed are those of us to whom the Latin proverb applies: Verbum sat sapienti est: “A word to the wise is sufficient.” I know that in my case quite a few repetitions were required to spur me into action.

I’ve written about this subject in “A Strategy for Self-Empowerment,” and yes, now as then, we’re talking about “patient empowerment.” It is vital that you learn all you can about your disease because, like it or not, you are the final authority in making your treatment decisions. And it is equally important not to rush the treatment selection process or allow anyone else—including respected medical professionals—to stampede you into making a decision before you have done your due diligence.

Your first step after being diagnosed is to understand the concepts of staging and grading. The grade of your cancer will tell you how aggressive the cancer cells are; the stage tells you how extensive or advanced the cancer is—whether it is still confined within the prostate gland or has spread beyond the prostate. This information will determine your prostate cancer’s risk factor, and help you decide which treatment option is most appropriate for you.

Your risk level determines your treatment, and not all prostate cancer requires immediate treatment. If your stage and grade put you in the Low-Risk category, your least invasive choice would be Active Surveillance—simply monitor the situation with regular PSA testing, prostate exams, and periodic repeat biopsies.

If you fit into the Intermediate-Risk category you have many treatment choices, and in order to make the best decision you need to get opinions from multiple specialists with state-of-the-art knowledge, and equipment. You will have already seen an urologist who, if you are a candidate for surgery, is likely to have recommended a radical prostatectomy. If this is the case, don’t be shy.  You owe it to yourself to ask the tough questions: What are the risks? How many procedures has he performed overall, and how many within the past twelve months? Does he perform nerve-sparing surgery, and if so what is his success rate with preservation of potency and continence? You will usually find the most experienced surgeons at university centers. But an urologist who is well trained and does 100 procedures a year—and who you feel comfortable with—is also a good bet.

However, before making a decision, you should consider the other options available to you. Consult a radiation oncologist about brachytherapy (radioactive seed implantation). Learn the pros and cons of Intensity Modulated Radiation Therapy (IMRT), a precisely targeted procedure that delivers high doses of radiation to the prostate and, when necessary, to the seminal vesicles and other surrounding tissue. Once again you need to ask about success rates, and about the possible side effects of both radiation treatments.

Men in the Intermediate-Risk category also need to consult a medical oncologist about hormone therapy, a treatment that blocks the male hormone testosterone and significantly slows the spread of the cancer—often for years—during which time, less toxic and more effective treatments are likely to become available. Hormone therapy does not promise a cure, but it is a viable, noninvasive alternative to surgery or radiation.

If you are in the High-Risk category, you will usually need two or more different kinds of treatment—probably hormone therapy plus radiation, and possibly chemotherapy. But don’t panic. There are a number of exciting new treatment methods in the pipeline, so even if you fall into this more serious category you are not looking at an imminent death threat!
It goes without saying that there are pros and cons to all prostate cancer therapies. And when selecting a treatment plan, much will also depend on your age, your general health, your life expectancy, and your tolerance for the inevitable risks and undesirable side effects of whichever treatment you choose. I am not suggesting that you back off from a definitive form of treatment because of potentially adverse side effects, but bear in mind that quality of life is also a prime consideration when deciding which treatment is best for you. And remember: In most cases prostate cancer is the tortoise of cancers, and--especially if you are in your seventies or older--you are more likely to die with it, not from it. A word to the wise . . .

Is the Wizard of Wall Street Losing His Way?

BY MARK SCHOLZ, MD

According to a recent CNN News Release, Warren Buffett, American business magnate and philanthropist, addressed his prostate cancer diagnosis, dismissing it as a "non-event."

In a letter to shareholders last month, Buffett, 81, disclosed that he had been diagnosed with prostate cancer. The announcement sparked discussion about who'll take over from Buffett one day.

"I feel terrific," Buffett said in response to a question at the Berkshire Hathaway annual meeting. "I have four doctors; at least a few own Berkshire Hathaway (stock). They described various alternatives and the ones they recommended do not involve a day of hospitalization. They don't require me to take a day off work, the survival numbers are way up.”

This announcement reveals the lack of progress in general public understanding of the unique nature of prostate cancer. People still have not learned that when the condition is newly-diagnosed it almost always means that even in the worst case scenario, cancer mortality will be postponed for at least 10 years, if not indefinitely. 

Other news releases have indicated the Mr. Buffett is planning to undergo radiation, probably IMRT. IMRT cure rates range between 80 to 100% depending on specific individual factors such as Gleason score, PSA and how many biopsy cores contain cancer, details that have not, in Mr. Buffett’s case, been made available.

The real question is: Considering that Mr. Buffett is 81, does he require radiation? Getting cured sounds like a no brainer until you realize that his chance of dying is incredibly small even if he skips radiation altogether. And even with modern radiation there is a risk of permanent damage to sexual, urinary and rectal function.

Why is his risk of dying so small?  Prostate cancer has a unique Achilles heel. It needs a continuous supply of the male hormone testosterone to survive, without it prostate cancer shrivels and dies.

Pharmaceutical agents that block testosterone constitute an amazing safety net.  With this safety net in place, an 81-year-old man has the option of monitoring his status rather than feeling obligated to rush to immediate curative treatment, as would be the case with other types of cancer. 

If, while monitoring the situation, it appears that the disease is growing quickly, radiation can be administered at that juncture. After all, even if the very worst scenario ensues and the disease metastasizes—jumps to another part of the body—testosterone inactivating pharmaceuticals can suppress the disease for an average of more than ten years.

Mr. Buffett has become famous for his wise capacity to make successful long-term investment decisions.  Rather than relying on the expertise of others he should apply some of his energy and talent toward researching his medical situation further. He might conclude that the risk of spending his twilight years with radiation-induced urinary or rectal damage is far greater than the risk of early mortality from prostate cancer.

A Question of Blood Flow?

BY RALPH BLUM

Have you been watching the TV commercials for drugs that combat erectile dysfunction?  I don’t know about you but I’ve been conditioned PR wise—only in the wrong direction. I mean, I’ve become like one of Pavlov’s dogs gone bonkers - every time the bell rings, instead of salivating, I tend to piss on the bell-ringer’s leg. It’s gotten to the point where I grab the mute button whenever I hear any one of the brand names, or see a shot of a couple lying in his-and-hers bathtubs on a cliff overlooking the Promised Land. “A question of blood flow,” my keester! Still, in case you’re still in the “Help me get it up” market, let’s review a few of the offerings.

In addition to Viagra, Cialis, and Levitra, I found 12 other erectile dysfunction drugs listed; drugs with names like Staxyn, Yohimbe, Erex and Testomar . . . Compared with the big three, the others received very few, if any, reviews. However, ED commercials are ubiquitous on the Internet. When I last looked, I found over 300 “male enhancement” products on the market, each of them promising “bigger and better erections.” But what if you’re just not interested? What if one’s desire for sex is totally absent?

We know certain things for sure about prostate cancer and one of them is that it is, to various degrees, testosterone driven. Unfortunately, so is sexual desire. So what controls the cancer—a radically diminished testosterone level in the blood, aka TIP, as Mark has christened, it is a part of the formula for staying alive.

Attending Support Groups over the past two decades, I’ve heard a lot of discussion about erections and the absence of same. I’d bet that 96% of the complaints concerning the ED resulting from hormone therapy (and the resulting suspension of intercourse) do not come from our partners. It’s a guy thing. As one woman summed it up at a Support Group at the PCRI Conference last year, “If it’s a choice, believe me, we would rather have you alive than have sex.” So we’re talking ego versus reality.   

Yet all is not lost. Some couples, like my old Ojai friends, J and L, have replaced coitus with massage and cuddling and exploring touch, only to find that they actually have greater intimacy. As they have told one another, “I can’t see you too well, and I can’t hear you . . . But it feels really good.”

With all the horror stories, stories of fear and shame, of loss and self doubt, I find it heartening to see the lighter side. So when it comes to a catalogue of all the possible unpleasant side effects of erectile dysfunction drugs—ranging from dizziness and stuffy nose to seizure or sudden decrease or loss of hearing or vision—my favorite warning concerns priapism: “To avoid long term injury, seek immediate medical help for an erection lasting more than four hours.” By all means, call your doctor. In fact, you could make two calls, one toThe Guinness Book of Records!

In Chapter 16 of Invasion of the Prostate Snatchers, Mark talks about the effects of testosterone reduction and how to minimize its negative impact. While Viagra would permit most men to attain a workable erection, the problem proved to be more basic. When he was conducting a study, Mark found that many men simply “forgot” to take their Viagra. He wrote:  “To complete the study I had to resort to phoning them at home to remind them to take their pill.” While helping to preserve their lives, TIP had actually sapped all their interest in sex.

I have ridden the edge for what is now approaching a quarter of a century.  I have undergone no invasive treatment. Only hormone blockade.  There are no guarantees. Things may change, making treatment advisable at some point in my future. But so far so good.  For me my low libido has been a small price to pay to keep my show on the road.