10 down

29 to go.
Today I met with the nurse and a physician's assistant who both said that diarrhea should not be a side effect of my treatment. There might be bowel irritation, but diarrhea comes from higher up in the small intestine, which is not being touched by the radiation.
Also met with the social worker, who gave me information on various support activities. I'd like to go to the support group, but it meets when I work.
I also got the dosage. By the time I'm finished, the prostate bed should get 70.2 Gy (commonly called "grays"). I think 70.2 grays is a pretty standard dosage for prostate cancer.

side effect

A little diarrhea..not sure it's from the treatments, but it's kind of strange (I won't go into details) and I suspect it's bowel irritation. One of the therapists, looking at the chart, said "Yeah, that might be us. You're getting to the point where you might experience that." I just hope it doesn't get steadily worse for the remainder of treatments. 9 down, 30 to go.

More alignment images shot today.

An encouraging article

"The PSA disease-free survival after salvage radiation for all patients is approximately 25-40% at five-to-ten years after radiation.7,8 Favorable patients (PSA less than 2.0, Gleason score less than 8, positive surgical margins) may experience PSA diseasefree survivals of 60-70%.8"

Sailer, Scott L. "Radiation Therapy for Prostate Cancer: External Beam, Brachytherapy, and Salvage" North Carolina Medical Journal. March-April 2006, p. 152. http://www.ncmedicaljournal.com/mar-apr-06/Sailer.pdf

Since I'm in the "favorable patients" category (PSA 0.7, Gleason 7, positive margins) I'm in the 60-70% 5-10 year disease-free survival group. I'll take those odds. Before meeting with my oncologists, I had thought my margins were negative and my odds were much worse. (To clarify this--usually you would think negative margins are a good thing, because it means there was no cancer found at the cut edge of the removed tissue. However, when you are trying to figure out whether your recurrence is localized or not, it can turn things in your favor to have positive margins. Why? It provides a logical explanation for the increased PSA. It means there was an increased chance cancerous cells were left behind in the prostate bed, and if that's where your PSA is coming from, rather than distant sites, your PCa may still be curable.)

Sailer also says:

If a patient’s PSA does not initially decline to zero, he likely had occult metastatic disease at diagnosis and would not benefit from localized radiation, unless the source of the residual PSA is a positive margin and the Gleason score less than 8.

Well, my PSA was below 0.1 initially, but who knows what it would have been on an ultrasensitive test? .06? .07? I would say that it's likely my PSA did NOT decline to zero initially, and I would have likely had metastatic disease (or maybe more properly "systemic"), BUT I have positive margins--which gives a possible explanation for the PSA--and my Gleason was less than 8. Sailer is restating my earlier pessimism--when I thought I had negative margins, I figured the cancer was out of the barn. With negative margins, where would my PSA be coming from? Distant sites? Very possible. As I wrote above, normally positive margins=bad and negative=good..except when you're evaluating a rising PSA after surgery and trying to figure out whether or not salvage will work. With positive margins, it increases the probability that my problem is still local. Again, no guarantees. But I'm much happier to be in the 60-70% likely to have durable benefit or cure rather than in the 10-20% probability of durable benefit.

And remember, if you're having a recurrence after surgery--you're a unique human being, not a statistic. These are probabilities only. An acquaintance of mine had similar circumstances--PSA rising rapidly after prostatectomy--but he had negative margins. Nevertheless, he seems to have received a benefit from radiation--his PSA dropped from 0.5 before radiation to 0.01 afterwards. That's very encouraging--and against the known probabilities. Hopefully he's cured. He didn't have IMRT, like me, but proton beam therapy at Loma Linda University Medical Center.

number of treatments

I forgot to ask the doctor how many sessions exactly, so I asked the therapists today. To get the prescribed dose of radiation, it came out to 39--one day short of 8 weeks.
Seven down, 32 to go.

pretty pictures..

Yesterday I had my first weekly meeting with the radiation oncologist. He showed me some images from system that he used to plan my treatments. IMRT is amazing in how it can target specific areas and spare others. Here are some sample images to show you what I mean.
One week into treatment and everything's going fine. And I continue to recover from surgery (now 9 months ago.) Everything is rapidly returning to full capability, I'm happy to report. The radiation will likely cause some setbacks in those areas, but I'm optimistic that any problems will be mild and temporary. After seeing my insides modeled in 3D, and seeing how the radiation goes into all the nooks and crannies where the cancer might be hiding, I'm confident these treatments will knock it out, as long as it's still localized.
I now take along an MP3 player (too poor for an iPod!) to listen to music or podcasts during the treatment. Makes it go by faster. One segment of Science Friday fills the time nicely.

cat and bone scans

Today I got the CT and bone scans recommended by the medical oncologist. Even he is "almost completely positive" they will be clean. Plus, I hope I never need his services, these will serve as a baseline. I had to drink that contrast stuff and get an IV during the CT--it always does a number on my stomach later and today was no exception.
If you've never had a bone scan, there's nothing being beamed into you. YOU are lighting up the picture by virtue of some mildly radioactive element that you get injected with earlier. You just lie on this big scanner while your temporarily radioactive bones create their own art. The result looks like this (not my picture, of course):

baseline PSA

Got the results back on the PSA I had done the day before radiation started. 0.7. Not too bad. Based on my previous two scores, I had thought I might be at 0.8 or 0.9. Plenty of research shows you're more likely to benefit from salvage radiation the lower your pre-radiation PSA is. I would have liked to have started before I got to 0.5, but my cancer cells were too rambunctious for that. (If you're reading this for the first time and thinking "geez, what's this guy talking about? Zero point seven? That's nothing! My PSA was 4.2!" the deal is I've had a prostatectomy, so I should not have any measurable PSA by conventional tests--so I've still got cancer, and now I'm undergoing radiation.)

How I got to this point

A little backstory:

Several years ago I realized I was getting up more and more at night to go to the bathroom. I eventually asked my primary care doc about it. He performed a DRE (digital rectal examination) and said it felt a little "boggy." He ordered a PSA test. It came back just over 4, as I remember. That's high for someone my age--late 30's at the time. So off I went to the urologist.

The urologist examined me but didn't find anything unusual (nothing palpable). He tried antibiotics and anti-inflammatories, but nothing really seemed to do the trick with my PSA. And it rose a bit. So--biopsy time. Now at that time, local anesthesia was not widely used in prostate biopsies. Prostate biopsies are the kind of thing doctors classify as "uncomfortable" while the rest of us compare the experience to being poked with knitting needles. (These days, don't worry--your uro can give you a shot of lidocaine right in the area of the prostate and the biopsy will be tolerable, although still not a lot of fun).

The biopsy came back negative for cancer. Everything looked normal.

So we tried some more monitoring and as I recall, more drugs to try to see if it was something entirely benign. But eventually the PSA rose up again (I don't recall that score) and we went for another biopsy. This time, high grade PIN cells were found. In a large percentage of men with high grade PIN, cancer is found on subsequent biopsies. But--I was still negative for cancer. So we tried Avodart, a drug that would shrink the prostate and just maybe, have some chemoprevention properties. My PSA dropped more than 50%, to just over 2.0, and stayed there for a couple of exams.

And then it doubled in 6 months.

My uro checked me out with another DRE and found a palpable nodule. Now I went to the hospital, under general anesthesia, for a saturation biopsy. Lots of samples. And 20% were cancerous.

At this point my official PSA was 4.8, but since Avodart was cutting my PSA in half, my "real" PSA was more like 9.6.

I had a Da Vinci prostatectomy in late Spring 2006. Recovery wasn't bad, except that I wasn't psychologically prepared for the catheter--it took some getting used to (2 weeks after surgery it was out--and it wasn't bad coming out, either. Glad to be rid of it.)

The surgical results: positive margins, negative seminal invasion, Gleason 3+4. Both lobes involved, cancer found throughout the gland.

I continued to recover just fine from surgery. Incontinence was only a problem for a few weeks. ED has been a problem but it's getting better all the time.

My first PSA after surgery was less than 0.1. 3 months later, it was 0.2--worrisome but probably no reason to act yet. 4 months later, it had tripled to 0.6. My urologist referred me to a radiation oncologist and a medical oncologist.

I was very anxious and depressed--but I didn't have the right information. I thought I had NEGATIVE margins, in which case I would have been more likely to have distant rather than local disease. At 44, I was looking at hormones, chemo, and a very premature departure from the planet.

But the oncologists--both of them--saw that the pathology report actually said that the margins were positive. Both of them agreed--no hormones, just try IMRT. There's a good chance it will kill the remaining cancer cells, provided they haven't left the area where the prostate used to be. So that's what I'm doing.

treatment begins

Just like in the simulation and dry run, a therapist positioned me on the table, then fled the room. This time, though, the gantry did its thing. It started directly below the now-elevated table, made a high pitched humming noise for a few minutes, and then moved 15 or 20 degrees and did it again. When it had made a complete circle around me, the session was over. Less than 15 minutes. I can leave work, get the treatment, and be back at my desk all within 40 minutes.
I don't think I drank enough water this morning, though. I'll have to make sure I do that. Not that it makes any difference in what is experienced during the session, but over the course of treatments it should help reduce urinary irritation.

the name of this blog

So what's the big deal with PCa before the age of 50? Well, it's not common. Visit the waiting room of your nearest urologist, or go to a support group meeting. You'll see what I mean. I was diagnosed at 43.
A recent study showed the median age at diagnosis was 68. ZERO percent were diagnosed under the age of 35. Only one half of one percent of the diagnoses in that time were in my age group--35 to 44. Over 91% of the time, diagnosis happened at 55 or older.
See what I mean?
Now that doesn't mean prostate cancer isn't lurking. Autopsy studies of men who died from other causes have found prostate cancer is lurking in a surprising number of relatively young men. But obviously, since prostate cancer only accounts for about 3% of male deaths, and the median age at death from PCa is 80 most of those men probably had a form of the disease that was latent. Most men die with prostate cancer, not from it. My PSA was rising quickly, however. (and still is, at least up until I start radiation). I would most likely NOT be one of those guys who dies in their 80's with the disease--I'd be one of those guys who dies in his 50's FROM it, if not for treatment.

dry run

I had the dry run this morning. One of the therapists showed me the area from where they would monitor me and operate the accelerator. Then they took me into the room where I saw the machine for the first time...it looked a lot like this, but more of a beige color.and then they used it to take a few x-rays. After they were done the therapist showed me the x-rays from today, compared to CT scan taken when they put the alignment marks and tattoos on me. To me, and to the therapist, they looked EXACTLY the same. The cross hairs matched perfectly from one picture to another.

By now my doctor has met with the medical physicist and mapped out my treatment--how much radiation will go to which parts of me. Tomorrow the real treatments begin. The doctor advised me to make sure I have a full bladder, but not to the point of discomfort. That is supposed to help lessen urinary side effects of radiation.

Interestingly, the male therapist who helped me (let's call him Rick) looks younger than me and yet he too is a prostate cancer patient. Diagnosed last year, underwent the same robotic prostatectomy as me, at the same hospital. He hasn't gotten his first PSA back yet.

On my way back to work I stopped by a lab and had blood drawn, for PSA and CBC.

The Story So Far..

I'm young, as far as this disease goes. Diagnosed shortly before my 44th birthday (whoopee!). Robotic surgery (more on that later) shortly after my birthday. At first, all seemed fine...PSA dropped to less than 0.1. But a few months later it was 0.2, and then 0.6 just before Christmas. Merry Christmas, your cancer is still there...

I grew increasingly anxious. But the problem was, I didn't have all the facts. Here's what I thought my situation was:

Gleason 3+4
PSA 9.6
Seminal vesicle invasion--unknown
Negative margins


Now, with those indicators, and a rise in PSA within 1 year--it looked like my recurrence was distant. No longer curable. Time for hormones--at 44, I was looking at a drastic change in my personal life.


But I had two crucial facts wrong. My oncologists (radiation and medical) confirmed that I had POSITIVE margins--cancer extended to the edge of the tissue that was removed and it would be a safe bet that it went further than that. So that provided a logical, and much more optimistic explanation for the rise in PSA--there was cancerous tissue left behind. If that's the case, a cure might still be possible, by radiating the prostate bed.

And, the seminal vesicles were known to be free of cancer. Again, good news, and another slight nudge to the "local" end of the local vs. distant disease question.

Of course, there are no guarantees. I could have localized AND distant disease. But my outlook is much different.

I'll start IMRT this week. It's the latest thing in radiation oncology. The radiation can be focused very precisely, and the amount of radiation can be varied and exquisitely controlled by the oncologist.

I got tattooed last week. One right above my crotch, and one on the side of each hip. Lasers will be centered on those tattoos each time to insure the radiation goes where it should.

Next will be a dry run, where X-rays will be taken with me in position as if I'm going to receive treatment. The X-Rays will be compared to a CT scan done last week, to insure everything lines up.

And then the treatments will begin--15 minutes each morning, 5 days a week.

I'll let you know how it goes.