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.