Cancer's gift

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And now for something completely different. Imagine this as a powerpoint deck.

Slide one: My wife, best friend and lover has a lovely three-note laugh (ha ha ha!) that she reserves for odd newspaper stories, improbable pitches from our sons, and antics by our cat and by me. The last "ha" is an infinitely flexible instrument that can be tuned to say many things: that's funny; forget it; try that again!; etc.

Slide two: There are many wonderful museums and galleries in Paris including some wildly eccentric ones. If you find yourself there check out the Musée Gustave Moreau, for example. The artist had it built himself -- two large floors stacked onto his childhood home. The first two floors of the rebuilt building (the original bits) are a temple to his parents. The top two are for his strangely haunting paintings, drawings and sculpture. Wonderful, but it doesn't beat the Musée d'Orsay, home of France's amazing heritage of late academic and impressionist painting. This was the moment in art when its greatest practitioners had absolute mastery of their craft -- painting, sculpture and other forms as technically accomplished as the best work of antiquity or the Renaissance -- and were simultaneously kicking down the doors of convention and state-sponsored rules. Better, the Orsay is being renovated, and so its collection is jumbled up in temporary displays and can be seen in new ways. The paintings that Gauguin and van Gogh did together in the south of France now hang together, for example. They scream off the wall -- particularly the van Goghs, which were the last few things he wanted to say before he decided to leave us by his own hand.

Slide three: My older son devoured the comic strip Zits when he was a little younger, and now seems dedicated to living out some of its tropes. For example, he sprawls on our living room couch, which has gradually been beaten down to conform to his body in ways I think the designers did not intend. One of the pillows now forms a sort of off-centre half-pipe that perfectly fits his leg. The other pillows are just so. The lamp is just thus. Soon he will put down roots there and we'll have to water him.

Slide four: In the early 1940s my grandfather wanted a shack he could play poker in with his buddies, and where he could hammer and saw stuff during summer holidays. By good fortune he built that shack (later slightly expanded into a nice little cottage) next to a Laurentian lake north of Montreal that developed an active homeowners' association that cared and still care about it. And so that lake is not dentist-drilled with motor boats and personal watercraft; its clean spring-fed water isn't mindlessly fouled with lawn chemicals and algae; its fish are periodically restocked and fussed over. Put on goggles and dunk your head on a sunny day and the light dancing through the particles in the water makes for a fun kaleidoscope. On a moonless night you can see stars over that lake almost as bright as the ones you can see on the prairie in rural Saskatchewan. If it's calm you can stand out in the water on a rock at midnight, ten feet off my grandfather's dock, and feel the warm water and hear the silence and see the stars perfectly mirrored on the lake and you will think: this is a sacred place.

Slide five: My younger son picked up the guitar a few months ago. He is a determined and joyous student of it, and clearly has a natural affinity for music as evidenced by the increasingly cordant (which must be a word, the opposite of "dis-") chords and note progressions he practices until we tell him that even on a summer night you have to go to bed sometime.

I could go on.

I've lived with my family for many years; have been to Parisian museums before; have been going to my grandfather's place on the lake my whole life. But to be there -- to really be there -- to see all of this and hear it and smell it and taste it with your full attention. To experience it in the bright light like one of those paintings; without wondering in that little corner of your dark mind that is always back at work: "what's new on the blackberry this minute?"

That is cancer's gift.

Cancer has few other gifts, in my view. Not that you don't get to meet some nice people. Like my brothers-in-arms sitting alone or with their wives or with their young children in the waiting room at the Princess Margaret hospital in downtown Toronto. Like the coolly efficient and caring nursing team who keep the trains running on time there in that state-of-the-art prostate cancer clinic. Like the bright-eyed, sharp-as-tacks residents and interns who take you through the steps and give you the news you were hoping not to hear. Like the top-of-their-game doctors who tell you what the options are, and make sure you talk to their colleagues so that you know there are a number of options and they all have upsides and they all have downsides.

Like many men, up until recently I took the view that doctors weren't for us, and that there were more pressing matters to deal with. But it turns out that ain't so. Federal NDP Leader Jack Layton (always much more careful about his health than I) discovered that last December. And I discovered it in June. We've worked together on several federal campaigns. Now we're also tackling a different opponent together.

If you google "prostate cancer" you get, let's see... 15,200,000 hits in 0.18 seconds. There's a lot to take in; a lot to understand; decisions to make that you have to make yourself. I've taken great comfort from a number of personal stories generous people have posted on the Internet narrating how they tried to make sense of it all and set a course for themselves. So I'm going to give back a little, by posting a few notes here.

Upsides and downsides

About 25,000 of us will be diagnosed with prostate cancer in Canada this year. And we're all going to want to know three numbers: the stage; the "Gleason"; and the PSA.

"Stage" is a big thing in cancer-talk. It tells you how far along the cancer has progressed. This site reads well to explain some of the details. In summary, Stage I means cancer is in the prostate only, and can't generally be felt during the digital rectal exam that keeps many of we in the brotherhood away from doctor's offices until it is sometimes too late. Stage II is a more advanced cancer that is still confined to the prostate. Stage III means the cancer has spread beyond the outer layer of the prostate to nearby tissues. Stage IV means the cancer has spread to lymph nodes, organs and/or bones.

My stage on diagnosis was stage T1c -- relatively good news.

"Gleason score" is nicely explained on this Government of Saskatchewan website. A low Gleason score means the cancer is probably less aggressive and will likely grow more slowly. A high Gleason score means the cancer is in a form that can grow more quickly and may spread aggressively.

My Gleason score was 6 -- also not bad as these things go.

Here is an interesting article about "PSA" by Richard Albin, the researcher who discovered it. Dr. Albin has some tough words for how this marker is being used in the United States -- a little taste of the uncertainties and imponderables of this disease and its treatment.

Still and all, my primary care doctor took the view that a PSA score higher than 2.5 merited watching (I came in at 3.05 when first tested in October, 2009). A distressing spike to 9.58 in May, 2010, got me my referral to Princess Margaret hospital. A less distressing 5.54 in June 2010 at the hospital still caused my doctor there to order a biopsy, which revealed that I did indeed have this disease, fairly widely-spread within the prostate.

With a combination of markers like I have -- stage 1c, Gleason 6, PSA less than 10 -- there is good reason to believe that prostate cancer can be cured. The odds can be calculated fairly precisely. There is an interesting tool, called the " Han tables" that allows you to type in your numbers and get a forecast of your odds. The " Partin tables" give more detail.

Later stages, higher Gleason scores, and higher PSA scores can point to a more difficult cancer. At later stages treatment may not be seeking a cure but to buy years, perhaps many years, of good quality of life (and, as things sometimes progress, to mitigate symptoms and pain). This is why it is never great to say to someone, "Ah, well at least you only have prostate cancer, and that is easily cured". Alas, not all patients with it are working towards a cure.

But I am.

So, for people with my numbers, what are the options? There are lots of options, described on many websites. For example here and here and here.

Lots of stuff to read and plenty more out there. Every man with this cancer needs to consider the information available and make a judgement about it. Here's how I have assessed it, based on what I know about my condition now and what I can make of the options so far.

Waiting and watching: I was very tempted indeed to opt for "watchful waiting," on the argument that my cancer might be "indolent" and could sleep happily for the next thirty years or so without troubling me. Every six months I could have a PSA test done; perhaps biopsies, periodically. If there was evidence of a flare up I could deal with it then.

It is hard to make sense of the research on this option. What seems fair to say is that it fails in some percentage of people who try it, and that the younger you are, the likelier it is that it will fail at some point. For this reason, much of what you can read on the topic suggests that "watchful waiting" is a good strategy for older men who are more likely to succumb to other conditions. And not so much for otherwise hopefully healthy fifty year-olds like me.

Both interns I spoke to at the hospital strongly recommended I not opt for this strategy, because if it went wrong I faced a good possibility that I would have lost my chance at a cure. The three doctors I consulted were slightly more mixed about it. Two strongly recommended against it for the same reasons as the interns; one said it might be a reasonable strategy if I was feeling brave. There is a raging debate over watchful waiting. A growing chorus argues that this cancer is grossly over-treated and can be left alone in many cases. But I've decided that other people can volunteer to test this view. Since I don't fit the best demographic for this strategy, and having read the available descriptions of what happens when things go wrong, I wasn't feeling that brave.

Surgery: "Why don't you just get that cut out and make it go away?" a friend asked me. Indeed, that is a more than viable option. Princess Margaret Hospital in Toronto is a Canadian centre of excellence for this kind of therapy. Cure rates for patients with my kind of numbers are excellent.

It also seems to be true that surgery sometimes implies a relatively long recovery time, and a relatively high chance of incontinence and impotence. The good news is that these side effects are worst immediately after surgery, and can then improve over time. Another important consideration is that if surgery doesn't provide a cure, you can still be treated (still hoping for a cure) with radiation. But the reverse is not so easy. Being treated by radiation makes surgery more difficult if you need it later.

Many people therefore opt for surgery and report excellent results.

Others write in discussion forums about their struggles with side-effects that in their case didn't improve over time ( this forum is full of interesting discussions weighing the pros and cons -- being careful to note that what's there is written by patients and their families, not by medical professionals).

So then, among other options, there's:

Brachytherapy: In the current issue of the International Journal of Radiation Oncology Biology Physics (Aug 2, 2010), Dr. Juanita Crook and her colleagues involved in the "brachytherapy" ("brachy" is Greek for "short distance" -- as in bringing radiation a short distance away from the offending organ -- not a reference to elephants) practice at the Princess Margaret Prostate Centre sum up their ten-year experience with radioactive seed therapy for cancers like mine.

This paper rewards a careful read. It is in "pre-press" as I write so takes a little work to get access to. In summary, Dr. Crook reports that the Princess Margaret Hospital brachytherapy team treated 1,111 men with iodine-125 brachytherapy, for low and intermediate-risk prostate cancer between March 1999 and November 2008. They reported 27 failures, yielding an "actuarial 7-year disease-free survival rate of 95.2%". Encouragingly, they also reported a relatively lower level of side-effects. Their conclusion: "Iodine-125 prostate brachytherapy is a highly effective treatment for favourable and intermediate-risk prostate cancer and is associated with maintenance of good urinary and erectile functions."

A frequently-cited paper comparing the side-effects of the various options is summarized here. It tends to confirm that you can hope for fewer side-effects from brachytherapy.

Excellent!

And so I signed up.

And so on Friday Aug. 27 I presented myself for phase one of this treatment -- "mapping".

At a certain point in the proceedings, things started to feel kind of familiar. So I switched from making proposals for the installation of big-screen televisions in the operating room so that patients can be better entertained watching Canadian movies and television shows, and offered the four nurses present for the set-up the observation that my wife considered all of this to be fair revenge for the two childbirths I put her through.

They considered this briefly.

"Nah," one of them finally said. "It isn't, because she isn't here to see it."

The product of this first stage was a detailed scan of the offending organ, so that a computer model of it can be built. This will enable the surgeon to form a precise plan for where 80 or so radioactive seeds can be implanted. Over their six months or so of life (before becoming inert titanium) they will, if all goes well, deliver enough radioactivity to kill the prostate cancer.

We shall see.

If you were diagnosed recently and are reading this at the start of your own search, here a few words I've read elsewhere that I like. Have heart: there are good options at whatever stage you're at. Take charge: you'll get lots of conflicting advice if you ask for it, and you will have to make some important decisions directly or by default. Take some time: the difference between the options are subtle and reward study. In particular, don't make a decision the day you are given your diagnosis -- you won't hear most of what you're told, and you need to hear it. Make a decision that feels right for you and then go forward. And then don't look back.

I won't look back.

But I will keep looking at things differently, I think. I'll be thinking in a whole new way about our lake and all that other stuff I was talking about at the start of this. As T.S. Eliot put it in the familiar Little Gidding:

We shall not cease from exploration

And the end of all our exploring

Will be to arrive where we started

And know the place for the first time.