More help in making treatment decision

From the Wall Street Journal, Ron Winslow, February 3, 2011

Researchers said they have identified a combination of four genes that appear to play a critical role in determining whether prostate cancer in its early stages will go on to become an aggressive, lethal disease. 

The information could enable doctors and patients to make better decisions after the diagnosis of prostate cancer, a disease that is commonly overtreated today, researchers said.

Predicting Outcomes

From the Arkansas Prostate Cancer Foundation

• Almost 100% of men diagnosed with prostate cancer are still alive in 5 years*.
• Over 90% of prostate cancer cases are found while the cancer is still either local or regional, and nearly 100% of these men are still alive 5 years after being diagnosed.
• In cases where the cancer has spread to distant parts of the body, 34% survive 5 years.
• After 10 years, about 98% of men diagnosed with early-stage prostate cancer are still alive*, but only 17.6% of those diagnosed with advanced-stage prostate cancer survive 10 years*.

*not including those who died from other causes.

Cleansing for prostate health?

Harmful toxins and parasites live in the colon and digestive system, eventually making their way to the prostate, where they accumulate enmasse and set the stage for disease, infection and chronic inflammation, a potential precursor for cancer.

It's a theory, espoused by many, especially in the alternative medical fields, including Dr. Larry Clapp, who popularized the idea in his book, Prostate Health in 90 Days without drugs or surgery (first published in 1997 and updated in 2007).

Even prestigious mainstream researchers like Johns Hopkins Research now report how chronic inflammation from bacterial infection can  trigger changes in our DNA, leading to tumor development.

Because of the prostate's vulnerability to infection and inflammation—by definition prostatitis, the number one reason why men visit urologists in the U.S—JHR has called the prostate "a breeding ground for cancer."

Check out Coming Clean On My 9-Day Cleanse ... in it, I blog about my second experience with a cleanse and some thoughts on cleansing and prostate health.

I don't have any interest in the company, Isogenix, that produced the cleanse products.

New Prostate Cancer Statistics

• Prostate cancer is the most common cancer among men, excluding skin cancer.
• American Cancer Society (ACS) estimates for 2010 include 217,730 new cases of prostate cancer in the US.
• Year 2010 estimates include 32,050 deaths occurring from prostate cancer in the US alone, making it the second leading cause of cancer death in men.
• All men are at risk for prostate cancer. The risk increases with age, and family history also increases the risk.
• African American men are more likely to have prostate cancer than Caucasian men, and have nearly a two-fold higher mortality rate than Caucasian men.

To treat or not to treat--new biomarker may help make decision

        A new "biomarker" has been have identified that may help men make a life-altering decision, whether to opt for radical surgery or radiation or to let the prostate cancer go untreated—knowing that, in most cases, prostate cancer is slow-growing and will never become fatal. After studying the medical records of 6,710 men over a period of five or more years, the researchers found that those with the highest ionized calcium levels in their bloodstream were three times more likely to die of prostate cancer than those with the least amount of the calcium.
       The study was reported in the February issue of Cancer Epidemiology, Biomarkers & Prevention

Aspirin may reduce prostate cancer deaths

Taking an aspirin a day has many health benefits, and reducing prostate cancer may be one of them.  New research shows men who use aspirin or other blood thinners after treatment for prostate cancer have a substantially lower risk of dying or seeing the cancer spread to another organ.


Christopher Logothetis, M.D., a medical oncologist at the University of Texas MD Anderson Cancer Center in Houston, said the study is in line with others that suggest aspirin's blood-thinning and anti-inflammatory properties reduce the risk of many kinds of cancer.


"Anti-inflammatory" is the key word here.  The Prostate Storm discusses at some length the connection between inflammation in the prostate with the occurrence of cancer.   The notion is that if you can reduce prostatic inflammation (prostatitis, by definition) through an anti-inflammatory diet, you can reduce prostate cancer as well.

PSA Rising? Say it Ain't So ...

Only days before publishing what I thought would be my first and last book on prostate cancer, The Prostate Storm, I got a call from my urologist’s office.  The nurse tells me the doctor wants to see me “immediately” about my latest PSA level.  

My alarm bells going off, I naturally ask what the number was.  I had just taken my tenth follow-up PSA test after high-dose radiation treatment 28 months earlier, but I didn’t know the result.  The nurse tells me 1.5 (ng/ml), which initially was a relief but I realized too it had risen from a nadir of 0.9 to 1.3 and now 1.5 in just six months. 

I wasn’t sure what a little bump up like that meant.  A year ago I had experienced a full point jump, the phantom “bounce” which happens to a lot of guys who have radiation therapy; it settled back to the nadir within three months.  

Like most guys with prostate cancer, I also had a history of BPH and prostatitis, which can influence PSA levels, so my initial reaction was not to worry.  A small rise could be attributable to lots of things, including sex. So I asked the nurse to have the urologist to please call me, but she explained the doctor didn’t make phone calls to patients “otherwise he’d be doing that all the time.” She insisted Dr. JM wanted to see me “as soon as possible” — which, she said, would have to be next Friday, a full week away.

Huh?  Doctor raises my anxiety level to Defcon 5, he won’t call me, and he won’t see me for seven days—what crappy patient care is that?  Is that how the “cancer may be returning” message is generally delivered? 

Why Some Prostate Cancers Are More Aggressive than Others

Researchers have uncovered a mechanism that determines prostate cancer aggressiveness -- a study published in Cancer Cell (July 13, 2010)

Why is this interesting?  For one thing, if science can determine which prostate cancers are more aggressive and hence life-threatening, physicians may not blanket recommend major interventions -- surgeries and radiation -- that do more harm than good in many men. Watchful waiting may be the more prudent course of action.

Around 15% of prostate cancers are dangerous or life-threatening, regardless of age -- but what makes them dangerous?  Could a guy get a test to see if he is truly at risk instead of having life-altering open or robotic surgery or high dose radiation (see post below on over treatment)?

The research below is focusing in on that question ....

Here's the release from the Sanford Burnham Medical Research Institute:

"How Prostate Cancer Packs A Punch"

Some types of prostate tumors are more aggressive and more likely to metastasize than others. Nearly one-third of these aggressive tumors contain a small nest of especially dangerous cells known as neuroendocrine-type cells. More rarely, some aggressive prostate tumors are made up entirely of neuroendocrine-type cells. The presence of neuroendocrine-type cancer cells is associated with a poor prognosis, but spotting these rare cells can be like finding a needle in a haystack.

More on Over Treatment, Colluding Physicians, PC Putting Medicare at Risk -- A Story of Greed (Docs) and Fear (Patients) -- From WSJ

 A hot topic in The Prostate Storm ... and in the Wall Street Journal this month:

Men with prostate cancer being over-treated (this time with high-dose radiation) and urologists colluding for financial gain ... oh my, could this really be true?  Are the reimbursements Medicare pays out as more Boomers move through their prostate years just too fat to pass up? Apparently...and it could bankrupt the system.

What happened to "do no harm first"?

Here's a couple excerpts from the Wall Street Journal, "A Device to Kill Cancer, Lift Revenue," on December 7, 2010.

"Roughly one in three Medicare beneficiaries diagnosed with prostate cancer today gets a sophisticated form of radiation therapy called IMRT. Eight years ago, virtually no patients received the treatment.

"The story behind the sharp rise in the use of IMRT—which stands for intensity-modulated radiation therapy—is about more than just the rapid adoption of a new medical technology. It's also about financial incentives...."

That's the lead ... later in the story:

"More than 190,000 American men are diagnosed with prostate cancer each year. How—and even whether—to treat the disease has long been controversial because prostate cancer tends to grow slowly. Many victims are more likely to die from other causes.

Check out this great site!

I love this site. Blogs written by people with all cancers, including prostate, the stories are heroic in many instances and will break your heart. The mission of Blog for a Cure is to make life a little bit easier for cancer survivors by providing a free personal web publishing service for them. Created by Jill, a breast cancer survivor, Blog for the Cure invites cancer patients to start a personal blog of their own to keep track of their journey.

COLD PC KILLER: New crytotherapy without side effects?

Just before heading to press with The Prostate Storm, something very cool, literally, crossed my desk on a new form of  crytotherapy that may actually kill prostate cancer cells without the usual side effects.

Well, that's the promise anyway.

It's called focal cryoablation, which allows doctors to freeze cancer cells at negative 40 degrees, using 3D biopsies to target the treatment directly to the tumor.  Sounds like a targeted cold therapy to me -- not unlike the targeted radiation of IGRT compared to the old shotgun approach with external beam.

In conventional crytotherapy, the treatment would freeze the prostate in order to kill off clusters of cancer cells. Side effects are considered rather mild, although the big risk is the impairment of sexual function, so I suppose it depends on your definition of “mild.” The freezing of the prostate may destroy the nerve bundles responsible for erections.

Are Men With Localized Prostate Cancer Being Overtreated?

The other day I'm talking to a friend whose dad, at 75, elected to have da Vinci robotic surgery for localized PC. I couldn't believe his dad had done anything. He had a Gleason score of 6, which is not life threatening at all and indicates a super slow growing cancer, especially at his age:  Why go through the surgery and risk the side effects of therapy?  Which is not fun.

Because, he explained, "my Dad wanted it out."

Get the cancer out at all costs.  Well, that's the first problem.  Most guys don't understand not everyone needs to get rid of prostate cancer, that most ALL men get  PC if they live long enough, and that about 50% of it is so slow growing it's not a risk to their life, according to research from scientists at the University of Michigan (The Prostate Cancer Quandary, Wall Street Journal, June 28, 2010).

Half of all prostate cancer is not a threat.  But guys are freaked out by having it.  Yet doctors are not educating them on watchful waiting as a smarter  option.  Smarter because the side effects of treatment are rough, and likely lifelong -- and completely unnecessary for many guys.

We're Back Writing This Blog Again

After taking off more than two years to write "The Prostate Triple-Whammy: One Guy Battles Prostate Cancer, BPH and Prostatitis, And Bets On A Cure-All," I'm back writing this blog as a complement to the book. I'll use the blog to present new information, research, and personal reflections on the aftermath of aggressive radiation therapy.

The author: Back to normal after PC, kinda sorta

I wrote the book in fits and starts.  It started as a blog chronicle of my treatments. Several people, including my wife, Lorraine, encouraged me to turn those vignettes into something longer.  I kept writing about the research and issues I was uncovering. Eventually I decided to try and organize a book that used my personal experience to frame the challenges that many men diagnosed with prostate cancer face today.

Somewhere along the way I began to suspect the cancer was linked to the years of prostate and bladder issues that I had suffered through -- the symptoms of BPH, chronic and acute prostatitis, and too many urinary tract infections.  The doctors told me these diseases were not linked -- they existed independent of one another -- but alas, I stumbled on research from John Hopkins Research, a fairly credible group of research scientists, who disagreed with my doctors.

Does prostatitis lead to prostate cancer?

The cause of prostate cancer is hard to pin down. Diet and genetics are huge factors. But increasingly, mainstream medical research is starting to uncover the link between prostatitis/BPH and prostate cancer....
....and the fact that former often leads to the latter.

If you leak, get up frequently in the night to pee, experience urinary burn, urgency, or even feel pain during ejaculation …. be aware these rather benign symptoms of prostatitis and BHP may get worse as you age ... and mainstream doctors may not be advising you on how to treat the cause for them.

Sure, they’ll monitor your prostate – probably enlarged – with annual digital exams and a PSA test. The latter is critical to guard against the worst-case scenario, cancer, and catching it early. They may prescribe drugs, like Avodart or Flomax, which claim to shrink the prostate and stop the symptoms over time.

But the question to ask your physician is whether any remedy they recommend will quell the chronic inflammation associated with prostatitis/BPH….because the inflammation, as it turns out, is a breeding ground for prostate cancer.

Eight years of inflammation

That’s what doctors did with me for eight years – they monitored my enlarged prostate and gave me round after round of antibiotics for my increasingly frequent bouts with acute bacterial prostatitis. (Which was misdiagnosed, by the way, as chronic bladder infections.)

It got so bad, I was rushed to the hospital with acute urinary retention -- the inability to pee -- because the inflammation squeezed shut the urethra. Talk about misery...predictably, they gave me more powerful antibiotics, which provided relief. But for how long?

I finally sought out an alternative healthcare practitioner to help me attack the “cause” rather than the “symptoms” of my problems. But it was too late. Soon after I headed down the road toward prostate health (colon cleanses, saw palmetto extracts, massage, etc.— more on all this later), I received the cancer diagnosis.

Mainstream Western medicine has been a true blessing with handling the big stuff, the cancer….but clearly lacking in everything that led up to it.

The road to PC is orderly

As I had learned too late, prostate disease tends to occur in an orderly fashion – prostatitis first, followed by BPH (benign prostate hypertasia), and finally the prostate cancer.

Even the doctors will tell you that prostatitis often starts in young men who can be in their teens, 20s, 30s ad 40s. BPH tends to occur in men over 50. And prostate cancer is most often diagnosed in men in their 60s and 70s.

It’s an orderly march, not inevitably ending with cancer – but the potential is there.

The truth is prostatitis is almost always found in conjunction with prostate cancer. In 1979, Drs. Kohnen and Drach found that 98 percent of surgically removed prostates showed signs of inflammation—the telltale sign of prostatitis. Urologist Timothy Moon, of the University of Wisconsin, and others report that 100 percent of the surgical and biopsied specimens they have examined, indicate the existence of prostatitis.

Not surprisingly, my biopsy revealed an inflamed prostate filled with prostatitis and some BPH….along with the clustered specs of cancer.

Looking for hard science?

Still, Western physicians – my urologist and internist included – are often dismissive of the idea that prostatitis is a cause of prostate cancer. Even if suspicious, many will tell you there’s just not enough hard science to link the two.

Until now….

Because Johns Hopkins researchers have now produced some hard science that supports the idea that inflammation of the prostate -- the very definition of prostatitis – is a likely precursor for prostate cancer.

An enlarged prostate due to chronic inflammation....a cause of cancer? Of course, this changes everything, in terms of what men should do if they experience the symptoms associated with prostatitis or BPH....or if diagnosed with an enlarged prostate.

If my doctors had told me – eight years ago – that my enlarged prostate and urinary tract problems were potentially stage one on the road to cancer, I would’ve aggressively begun a process of improving my overall prostate health. Then…not later.

I could’ve fought against the inflammation that sets in motion a series of cellular events that often leads to the cancer.

But I didn’t know.

Like most of the male population with prostatitis – THE MOST COMMON UROLOGICAL DISEASE IN AMERICA – we sit on our “benign” enlarged prostates, not thinking about how dangerous this condition is.

Yet…..whether our prostates are growing OUT (bigger in size) or growing IN (squeezing the urethra, causing urination problems) – the chronic inflammation in the prostate has become a potential breeding ground for malignant cells….

Okay, here’s the science

Straight from Johns Hopkins….

“Today scientists know that inflammatory cells produce free radicals—toxic molecules that can damage cells, especially cellular DNA. This type of DNA damage (also called oxidative damage) can cause genetic alterations (mutations) that lead to the uncontrolled cell division that characterizes cancer.

“Pathologists have found pockets of inflammation in the midst of cancerous prostate cells and abnormal (probably precancerous) cells known as prostatic intraepithelial neoplasia (PIN). Around the areas of inflammation, they discovered something new—groups of cells that look as if they are dying (atrophying) but are actually dividing (proliferating). The Hopkins researchers named these bizarre groups of cells proliferative inflammatory atrophy (PIA) and believe them to be either the very beginning of cancer formation or perhaps a breeding ground for prostate cancer.

“These areas containing PIA show high levels of an enzyme called glutathione S-transferase (GST), a critical substance that helps protect DNA from free radical damage. Ultimately, the gene that produces GST becomes inactivated in these areas of inflammation. GST production is halted, and the surrounding cells lose their DNA protection. Gene mutations may result, and the mutated genes may lead to prostate cancer.

“The theory is that inflammation—perhaps triggered by chronic infection, in conjunction with dietary or hereditary factors—leads to the DNA damage and the gene mutations that set prostate cancer in motion.”

Other evidence

Indirect evidence, gathered over many years, supports this inflammation-prostate cancer link. Some population-based studies, for example, have found a lower risk of prostate cancer among men who take inflammation-reducing medications or follow dietary patterns that are less likely to promote inflammation.

Several population-based studies have suggested that men who take non-steroidal anti-inflammatory drugs (NSAIDs), including aspirin, have a lower risk of developing prostate cancer. In one large study of more than 90,000 men participating in the Kaiser Permanente Medical Care program, those who took six aspirin a day had a 24 percent risk reduction of developing prostate cancer.

Chronic inflammation of other organs is commonly associated with various cancers. One needs only to look at the connection between hepatitis and liver cancer.....inflammation of the lower esophagus and esophageal cancer … ulcerative colitis and colon cancer … to see this phenomenon in action.

Look at your diet first

Dietary habits also influence inflammation. The typical American diet— high in saturated fat, sugar, and red meat and low in fiber, fruits, and vegetables—encourages inflammation (not to mention obesity and heart disease).

Reducing your intake of saturated fat—found primarily in animal-based products such as meat, poultry, whole milk products, butter, and cheese—and increasing your intake of fruits and vegetables are important first steps to discouraging inflammation and thus reducing your risk of prostate cancer.

(This post served as the basis for expanding upon the prostate cancer-inflammation-diet connection in The Prostate Storm)

Prostate cancer heightened risk for DVT

...
A friendly warning to anyone suspected of prostate cancer, or any other form of cancer for that matter: Beware of the sudden blood clot, especially if you're an endurance athlete planning air travel.

Not to be an alarmist, but cancer can cause your blood platelets to become rather “sticky” and begin clotting. Should you, say, take those sticky platelets on a cramped airplane flight….you’re at risk, no matter your age or fitness level.

You’re at risk of your blood pooling and coagulating, in my case, in a deep vein in my calf. Hence the name, DVT, or Deep Vein Thrombosis. The risk is that if not treated, DVT can lead to pulmonary embolism in the lung, which can be fatal.

That’s what happened to the late NBC reporter David Bloom, in the beginning of the Iraq war. Cramped in tight quarters inside a tank for days on end, a clot formed in his leg, traveled to his lung, and sadly killed him.

DVT affects about 2 million Americans a year, and up to 300,000 of them die when a fragment breaks off, migrates to the lungs and blocks a pulmonary artery, according to the Coalition to Prevent DVT.

Alarmed doctors

I knew little about DVTs when first diagnosed. But I saw real alarm in the eyes of my doctors when the Clot was discovered in my left leg. More alarm than when I received the cancer diagnosis, only days earlier.

The prostate cancer, unattended to, might get me in two to eight years, which is bad enough; but the Clot....in the next 60 seconds.

For several weeks after a long, cramped plane ride home from a ski trip to Salt Lake City, I walked around -- unknowingly -- with the huge clot forming in my calf. It hurt at first, like a severe muscle cramp, for 10 days. But then it quieted down, and became more of an annoyance. The calf was swollen, the back of my knee looked bruised and fatty.

At the time, I was preoccupied with the cancer diagnosis, getting scans, the biopsy, doctors appointments – all the preliminary details for choosing and preparing for a cancer treatment.

So the pain and discomfort in my ugly, swollen leg – that could wait. A couple doctors saw the leg but misdiagnosed it. They thought it looked like a Baker’s Cyst, where fluids pool behind the knee, possibly from a torn meniscus.

Eventually I visited an orthopedic surgeon, who recommended an ultrasound on the leg. The ultrasound spotted the long clot – think eight inches of twined yarn – in a vein deep inside my left calf, mostly below my knee.

Immediately, my doctor "stablized" the clot with the drug heparin. Instead of hospitalizing me for 4-5 days, I gave myself daily injections in my stomach to help affix the clot to the vein wall.

All this while starting up the radiation for the cancer....

Flying marathoners at highest risk

To say the least, what I’ve learned since about DVTs is alarming, because I thought it was mainly a problem for older folks with serious blood circulation problems. Not so.

Airplane travel is a high risk factor. Among frequent business travelers, studies found 4.5 percent of them develop one or more clots per year – about 50 times as many clots as found in a non-flying population. Most of these clots dissolve naturally, but the few that don't are a huge public health problem.

About 85 percent of air travel thrombosis victims are athletic – mostly endurance athletes, like marathoners. People with slower resting blood flow are at greater risk of stagnant blood subject to clotting. Also athletes are more likely to have bruises and sore muscles that can trigger clotting.

Not surprisingly, clots often go misdiagnosed. Like mine, the clot often feels like a muscle cramp or a tight knot. So aggravating the injury and increasing the risk of permanent disability or death is higher among athletes than other groups.

A perfect storm

For me, the clot likely formed for several reasons – a perfect storm of circumstance: The cancer changing the coagulation properties in my blood. I’m an endurance athlete, albeit an aging one, with low heart rate (55-60 bpm), hence slow blood movement in my legs. And a long, cramped plane ride following a ski trip, where my legs were fairly beat up, possibly bruised.

Hydration level is also a factor in DVT. As dehydration occurs, the blood thickens. Thick blood moves slower through the veins.

Long treatment period

The trouble with the typical DVT is that after the serious threat has passed, it threatens to hang around forever. After three months of the standard heparin/warfarin treatment, my doctor is continuing the medication for another three months. The swelling is down, but it still has a way to go.

Dr. Richard Chang, a researcher at the National Health Institute, wrote to me that about 50 percent of patients have good clinical results, meaning no pain and no swelling, after 3-6 months of treatment. But the warfarin only thins the blood, it doesn’t dissolve the clot.

A natural tPA and plasinogen in the blood flows over the surface of the clot to dissolve it naturally. As long as the clot is only partially occluding the vein – as opposed to a full occlusion or blockage – blood will most likely slowly dissolve the clot in time.

“God or evolution – depending on your world view,” Dr. Chang wrote me, “arranged for clotting to be quick to prevent bleeding to death, and clot lysis (dissolving) to be relatively slow.”

His message: Be patient. Wear compression socks.

Bang the Gong for Another Cancer Survivor

...
Last zap

As I lay beneath the hulking IGRT machine for the last time, my mind started to drift....even as it began to roam over my body......mostly naked, in white socks.….its claw-arms taking pictures of my loins.....then humming radiation in spurts -- would I miss anything here?

Sure, I met a lot of very nice people. My "old" buddies in the Waiting Room, particularly Freeman and Larry, battling their own cancer and fears. The nurses and technicians, who made things easy for us. The front staff who made fresh coffee for me every day.

My approach to radiation had been to take it one day at a time. One mile at a time. And suddenly, here I was. For marathoners -- the last .2 mile. Looking up into the big red and green laser eyes of the radiation machine, the finish was in sight. I had arrived. June 26th, 2008 -- nine weeks and 43 sessions after it started. A marathon run, indeed.....

Getting into The Spirit

As I lay there, I thought about how easy this had been. How lucky I had been.

Because doctors caught the cancer early – with my annual PSA test – I became a perfect candidate for this cutting-edge high-dose radiation therapy.

No drugs, no chemo, no hormone treatments….didn’t have to accept the surgery option, with all of its potential lifestyle drawbacks. No, all I had to do was lay here every day, for 90 seconds of radiation, for nine weeks.

But without the early diagnosis, the cancer would've spread, possibly outside the prostate, and then I'm in deep weeds. Think back to Dan Fogelberg. No PSA test. Because he was my age – fifty-five – the cancer became aggressive, and the music died … in two years.

Looking back

Yes, I pretty much sailed through the treatment, the prognosis is excellent, Humana didn’t hassle me about a hundred grand in bills…..AND, most important, all the apparatus seems to be working just fine, which, if you read the earlier posts, was a major concern of mine.

No question, making the decision on how to treat prostate cancer was easily the most stressful period of the whole experience. Getting the diagnosis produced a significant spurt of adrenalin that got my attention. But digging into doctors’ heads, doing my own research, and aligning heart-head-and-gut on making the right decision….therein lied the grinding, sleepless stress.

PSA Test ….Key to the kingdom

As I mentioned in my thank-you email to everyone who kept me in their thoughts:

Gentlemen, get your PSA Test annually, starting at age 40 (earlier than recommended). Don't skip a year, don't be an idiot because you hate doctors' offices. EARLY IS HUGE. Catching the cancer early saved my life and all the apparatus, you really want the two-fer......

…..catching it early made facing prostate cancer more of an inconvenience than a game-changer.

To all, my endless thanks

Lots of things felt really, really good on my way out the door of the Bethesda Comprehensive Cancer Center for the last time.

I was free of cancer (and the daily routine) and that felt damn good. On the way out, I banged the gong in the front lobby .... a tradition at the Center..... hit it hard ..... signaling the ringing in of yet another official cancer survivor.

(Hmm. Cancer survivor. Me and Lance. We finally have something in common....)

All along, I felt the real concern of dozens and dozens of family, friends and acquaintenances who sent me prayers, positive thoughts and good vibes. I joked when all the good vibes and prayers collided around me, there was a scent of lavendar. Well, something Heavenly was going on—if I didn’t always smell it, I could feel it.

Many of these prayer-people I didn’t know. My old ski bum partner, and now Baptist minister, Marple Lewis, had his whole Sunday congregation sending up prayers for me. “They're talking to God on your behalf,” Marple told me, ominously. A little five-year-old boy, the son of a co-worker, put me in his nightly bedside prayers—but he’d never met me. Email prayer cards flowed in, people constantly reminding me they were praying for me.

My wife, Lorraine, and son, Nick – they were my oxygen as I went into this deep dive that is cancer and everything that means. I breathed their kindness, love and concern every day, as I watched the sacrifices they made to help me deal with everything. They were awesome!

To all…..Thank you, thank you, thank you!

The Gift

In many ways, the experience of cancer has less to do with the disease itself and more to do with the love you experience from others.

I believe that’s why you’ll hear so many cancer survivors tell you that their cancer was a gift. That always sounds like cancer people had tapped into something mystical....and they aren't sharing -- what are you talking about? Cancer a gift? Hell, it's trying to kill you.

Okay, here's what I got, in my vast and bottomless limitedness as a human being:

The cancer does nudge you to see things, experience life, a little differently. I think, plainly, it just makes you a more grateful person. And a little gratitude just may be the ultimate secret of the universe.

If that's the lesson, if that's the gift, I'm a lucky guy.


***
More entries to come

Notes: Crossing the Halfway Mark of Treatment

This week I crossed over the halfway mark of my marathon to a malignancy-free prostate, and so, in radiation speak, here’s a few short but concentrated blasts:

Professional analysis
On my weekly Wednesday consult with my doctor, Dr. BG, I asked the esteemed radiation oncologist how the cancer was doing after almost five weeks of targeted, high-dose radiation. “By now,” he says to me, “it’s wondering, what the hell is going on here.”

What does it feel like?
I get asked that a lot – does the radiation hurt? Burn? The answer is no. Difficulties can accrue as the radiation inevitably touches sensitive areas, like the rectum wall and urethra. But for me, my first 24 days has been fairly easy.

In marathon terms, this is only the 16-mile mark, so the real showdown may lie ahead. Dr. Green thought I might suffer some fatigue soon. But I’ve crossed many marathon finish lines with my energy in tact. So far, so good.

I have a persistent urinary burn, which may clear up when they change the radiation blast from the full prostate to smaller sections next week. A week ago, I had 4-5 days of diarrhea but that cleared up.

Like running long distances, I monitor what’s going on in my body, but I don’t dwell on it. If I tire running, I slow down. If I feel fatigue now, I take a 20-minute catnap. I might do that once a day, and I’m good to go.

The Freakin’ Clot
Here’s where I bitch and moan. While patience has been a gift from the cancer (more later), I have little for the 8-inch clot, or DVT) in my left leg. It seems to be dissolving as slowly as rain and wind wears away the faces on Mt. Rushmore. (For anyone who missed the clot-blog earlier, it appeared around the same time as the cancer diagnosis, the probable result of the cancer changing my blood's coagulation properties and a long, cramped plane ride.)

Though the leg is still swollen, I got approval from my doctor to start walking/jogging last week. Three times I've covered 3 miles. That's huge! The pool's a drag--you can't sweat or listen to an iPod. Getting back on the road, even in a shuffle, feels good. Still, not knowing when this thing dissolves (and how long I need to be on blood thinners) is unsettling.

In The Waiting Room
Larry, with the tongue cancer from a lifetime of smoking, walked into The Waiting Room after treatment this week and declared that the doctors told him that after double-sessions of radiation for eight weeks his cancer was gone.

“My God, this shit really works!” Freeman piped up, which made us all laugh. Waiting Room humor.

Several days later, Larry finished up his treatments, and while I was thrilled to see him cured, it was oddly bittersweet knowing Larry wouldn’t be hanging out in the Waiting Room anymore. Watching the Closing Bell on CNBC. Swearing the occasion blue streak.

He may’ve been in his late 70s, but the difference in age hardly mattered when you’re fighting the same battle.

"Doctor says in a month I can eat a pastrami sandwich. You know what it means for a Jew to be separated from the deli? It hurts right here," he says, pointing to his heart, just above his feeding tube.

Best of luck, Larry. Live long, eat strong ....

BEAM ON: Getting Radiated

Three weeks into the radiation, my malignant prostate cells are taking a serious beating. So I’m told. The good healthy cells are also hurting, but they’re able to revitalize themselves. The bad guys, with the persistent radiation punishment, cannot. Therein lies the beauty of radiotherapy.

Since I don’t feel anything awful from the cancer or the treatment, it’s nice to know something is happening. The only thing that really hurts is how much gas I’m burning to Bethesda Health City and back every day.

Oh, there’s been fatigue here and there. But it sleeps off. And some urinary burn, which, as a veteran with chronic prostatitis, is hardly worth mentioning. (I’m Catheter Experienced.) Oddly, some of my old symptoms of prostatitis, like the persistently annoying drip that spotted my khakis, has gone away.

A Procession of Cancer
Monday through Friday at 4 p.m., I get radiated. We have a TV in the Waiting Room and watch Dr. Phil. I’m the second to the last guy of the day who proceeds to the Radiation Room every fifteen minutes. Those I’ve met are older than me by a generation – most are in for prostate cancer, others throat cancer.

Trust me on this one, if you smoke STOP TODAY. Larry, in his 70s, is a lifer-smoker now undergoing radiation twice daily and chemo for his throat cancer; his face is burnt raw and his throat is filled with blistering sores from the radiation, so he can’t eat. He lives on a feeding tube. “This is hell,” he tells me.

The guy who gets radiated before me, Michael, is a 70-year-old African-American who has lost two brothers and his dad to prostate cancer, and a third brother to lung cancer. He didn’t want the surgery because “if I can’t have sex anymore, what’s the point.”

He has a girlfriend. Once when she came over to his house, dirty dishes were piled up in the sink—very uncharacteristic of him. When she asked how’s he doing, he pointed to the sink and said, What’s it look like? “I use to be compulsive about things like dishes– now I don’t give a shit. The cancer’s helped me relax.”

Getting zapped
When my turn comes, I clutch the back of my hospital robe and walk to the Radiation Room. In the center is my salvation. The hulking Trilogy Machine. Imagine a sand crab the size of a Hummer with three giant claws. I lay on a table in the mouth of the crab, as a couple 20-something female techs slide my robe up and put a little white cloth over my naked loins. They shift me on the table until green laser lights line up with three permanent tattoos burned around my pubic hairs. Flat on my back, the girls lean in and stare. They measure. They’re ridiculously cute.

For the first days, I felt … well, surprisingly modest. Then I got use to it and I’ve been flopping around and hanging out ever since. Whatever. Let's get on with it....

The girls finally leave the room and the three giant claws start roaming around my body, scanning for images ... locking on to the gold markers inserted into my prostate .... hovering and re-aligning .... before a buzzing sound starts up and an electronic display box on the wall flashes…..

…..BEAM ON. In bright red lights! The big claw is radiating me!

I hold my breath every time. Don’t want to move my prostate with a gulp of air. The girls assure me I can breath, but why take a chance. I can hold my breath for 10 to 15 seconds – the duration of the maximum BEAM ON.

I get eight radiation blasts per session. Totaling maybe a minute and a half.

As of this Friday, those rebellious malignant cells have been buffeted by 22 minutes of high-dose radiation and they’re feeling it now….they’re hurtin’ bad ….trying to spread but….that old metastsizing energy ain’t there no more….their DNA is crippling..... weakening....bastard cells are starting to die.....

To burn them beyond repair, just 45 minutes of radiation to go. About six weeks.

Did I mention the blood clot?

Only days before my first radiation treatment, doctors discovered an 8-inch long blood clot in my left leg. In med speak, Deep Vein Thrombosis, or DVT.

Indeed, it’s life threatening if any part of the clot breaks off and makes its way to the lung. Recall NBC News Reporter, David Bloom, who died of DVT while embedded with the troops in the push to Baghdad; his long, cramped ride in a tank was cited as the reason he developed the fatal clot.


Cancer related?
A long, cramped plane ride coming home from a ski trip (with old friends, right) to Utah in February is a leading theory behind my clot as well. That, and cancer is known to alter the coagulation properties in the blood. So doctors think it may have been the combination. But no one knows for sure.

It hurt like hell
When a problem first appeared within days of my biopsy, my left calf swelled up and the area behind my knee became discolored and swollen. Looked like a Baker’s Cyst, not too big a deal. It was painful for about 10 days. But low on my priority list in the aftermath of the PC diagnosis.

After walking around with the undiagnosed leg problem for almost a month, I finally saw an orthopod, who ordered an ultrasound that found the clot. Actually, it’s a long fibrous thing – think 8-inches of twined yarn.

My doctor immediately put me on heparin and coumadin to stabilize the clot and thin my blood. The clot should dissolve over time – 6 weeks to 3 months.

Timing is everything
If the blood clot had been discovered before permanent gold markers -- the key to IGRT's targeted therapy (see Part 3) -- had been inserted into my prostate, doctors would’ve put off the radiation treatment for months. The DVT posed a more imminent danger.

Inserting the markers was a minimally bloody procedure. But no one would’ve taken the risk of me bleeding out internally because of my thinned blood due to the coumadin. Delaying radiation may have changed my overall treatment options as well.

So I was pretty fortunate – twice, actually. The clot didn’t break off. And I stayed on track with cancer treatments.

The Decision: I Pick IGRT....So Radiate Me

...
Okay, we've arrived at the future: Image-Guided Radiation Therapy. It's the cutting edge in high-dose radiation. The summit of Prostate Cancer High Tech.

I’m betting all my marbles on it.

After a week of hand-wringing and sleepless nights, the final decision for a treatment came easily enough. Could’ve been the promise of hitting the trifecta – high cure rate, no incontinence, no impotence.

Or total exhaustion.

Or maybe it was the mysterious old lady in the hospital who gave Lorraine and me deep, familiar hugs, and whispered “Everything will be fine,” before disappearing down a hallway, into a wisp.

“A sign,” Lorraine called her. “You can’t dismiss those things.”

Okay, maybe, whatever. Admittedly, it was weird. Fact is, moments after the hug and a long conversation with radiation oncologist, Dr. BG, I felt like I’d found a treatment that my gut and head agreed upon.

With the decision came sudden and remarkable relief. The load lifted. My step lightened. Later that afternoon, I even slept.

Not the well-worn path
Initially, choosing radiation over surgery seemed a touch risky. I felt I was going against the gentle nudging of Really Smart Guys Who Should Know What The Hell I Should Do -- two urologists, two internists and one brain surgeon.

Most counseled me to seriously consider surgery – which I did, but it seemed insane. The risks atrociously high. Around 15-50%* for some combination of incontinence and impotency for the rest of my life -- at 55 years old, horribly unappealing odds, even if survivability looked pretty good (95% for my situation).

Now I’m just a layperson, not a medical professional. Still, arguments for surgery as the ‘gold standard’ treatment for guys my age seemed flimsy to me at best. Especially today.

Surgery and high-dose radiation are equal in cure rates for localized, early-stage prostate cancer (like mine), everyone agrees on that point. But there's one caveat for radiation: it may only be good for up to 10-12 years. After that, no one knows for sure if the cancer will return.

No one knows the ultimate outcome because high-dose, targeted radiation hasn’t been around that long; high-dose brachytherapy seeding, for example, was the cutting-edge – you guessed it – about 10-12 years ago. Physicians simply don’t have the data that extends 20 and 30 years, into their comfort zone. So naturally, they tend to be cautious with younger PC patients (40s and 50s), whose cancer is more aggressive and needs to be dealt with in a serious manner.

Hence, the conventional wisdom: Let’s cut it out. Operate! Give radiation to the older guys who, frankly, are staring at shorter life spans, may not be up for major surgery, and just need to put the brakes on prostate cancer.

Which is what happened to my Dad years ago. At 70, he went the radiation route, because doctors believed surgery may be too hard on him – even life-threatening. Sure enough, he survived the prostate cancer, but died of esophageal cancer eight years later.

That was then, this is now
But over the last decade, oncology radiation technology has gone on an Apollo Moon mission. The new technology is astounding. The way they can accurately deliver high-dose radiation within minuscule margins is mind-boggling.

IGRT is the latest and greatest. As the 50-something technician who did my biopsy told me, "It's the biggest breakthrough in radiation therapy in a long, long time. You're lucky."

Yeah, and I'm feeling it: Since patient positioning is critical in how it all works, four 24-carat gold markers – about the size of rice grain – were implanted into my prostate, and the last two hurt like hell.

The IGRT machine -- viewing my nether-reaches with fused CT and MRI scans -- is then able to lock on to my implanted markers before delivering high-dose radiation that PRECISELY conforms to the shape of my prostate. How cool is that?

Even if the prostate moves -- say, from gas bubbles from that bean taco -- the IGRT adjusts daily to any new position. That's huge. The dosage can even be regulated within the radiation beam to avoid sensitive areas, like the urethra. In fact, the usual “spillage” of radiation outside the prostate, compared to earlier external beam and brachytherapy delivery systems, has been minimized from several centimeters down to a one or two millimeters.

That difference -- a Grand Canyan in radiation delivery -- is why IGRT is a game changer.

Save the bladder, protect the urethra, avoid sensitive sexual apparatus from getting singed and scarred by radiation.....and you're still in business for life. No ED. No diapers. No penile atrophy. Thumbs up! Everything's up!

How it works
I will lay underneath the hulking, three-armed IGRT machine 5 times a week, for 9 weeks. Over that period, the radiotherapy will expose my cancer cells to controlled doses of radiation, damaging their DNA. Normal cells also get zapped, but they’re able to quickly repair this damage – cancerous cells cannot. Since prostate cancer grows slowly, many weeks of therapy are necessary to continually damage the DNA in the bad cells.

‘No brainer’
Look, no doctor can tell me if the cure rate for IGRT is better than surgery over the long haul. I get it. The technology hasn’t been around long enough. What they do know is that I’m good for a decade or so; and radiologists like Dr. Green believes that for guys like me -- with localized, early-stage PC -- high-dose radiation is as good if not better than surgery beyond 10-12 years. Meanwhile, the risk of collateral damage is very small.

At 55, that’s makes IGRT, as my brother and two friends concluded, “a no-brainer.”

I did ask both Dr. Green and the brain surgeon-friend whether they thought it wrong-headed of me to take the 10 or 12 years, and gamble that if the cancer came back something else might be available -- like a shot or a pill -- that will be even more miraculous than IGRT, and less toxic.

Not wrong-thinking at all, they agreed. In fact, researchers already had a vaccine for one of the three PC genetic markers that eliminates cancer in 90% of lab rats.

Great. With IGRT and that little old lady's hug just in case, I'm good to go....radiate me.

***

*The percentages of incontinence and impotency vary widely, depending on specific treatment option, grade and localization of cancer, and research source.