Jeff Jarvis, prostate cancer, and me

11 August 2009

Yesterday, Jeff Jarvis wrote about his diagnosis of early stage prostate cancer, and then again today about (a) living la vida publica and talking about prostate cancer in some detail on the Stern show, and (b) his incredulity that Don Imus is treating his prostate cancer with peppers.

I always thought I’d write something about Jarvis one of these days – been reading his brilliant, irritating, lateral-thinking, proselytizing, reality-based posts for years. Who woulda thunk that I’d end up blogging about his prostate cancer instead?

First off, good for Jeff for talking about it – and keeping talking about it. The more it’s all out in the open, the more lives will be saved as other men go, oh yeah, well if Jarvis got his PSA tested, why the hell shouldn’t I? Or if not the men, then their spouses or partners, or kids, or pals will get them to go see their docs.

Since both of my brothers developed prostate cancer in their late 50s/early 60s, I’m considered a high risk candidate for developing it, too, which is why I ended up starting dealing with this early on. Back in the fall, my PSA numbers jumped a lot – from the mid 2’s to over 4, and that was enough for my primary care doc to push me to make an appointment with a urologist. Which I did, and (like Jarvis) got the harpoon (don’t try this at home, kids).

The results were inconclusive: there just wasn’t enough abnormal cell growth for a solid diagnosis let alone a treatment plan that went beyond what’s now called “active surveillance.” So three months later, I went back for a second one, with the same results. Inconclusive.

Gary the urologist and I agreed that I’d keep getting my PSA tested every 3-4 months and that I’d get a follow up biopsy if and when the PSA score increased above 4.01 (the results as of December 08).

Then I asked Gary the urologist (clearly, this was not something he was going to put on the table) if he didn’t think I was “the perfect candidate” for complementary medicine, since the prostate abnormalities seemed to be so limited in scope. My thought was, jeez, if alternative approaches (which I’d been reading about on the ‘net and anywhere else I could find information) were going to work, I sure seemed like the perfect person to try it out.

He said, well, sure, as long as you don’t spend too much money, it doesn’t hurt you, and you come back in 3-4 months for a follow up PSA test. We talked about a couple of practitioners in the North Bay/Marin county area that other patients of his had seen, and I got in touch with one of them, Michael Broffman at the Pine Street Clinic in San Anselmo.

I met with Michael about 6 months ago; he’s been practicing Chinese medicine for years, and I had heard of his clinic from friends of mine as well. I spent about an hour and a half with him (which was the first time anyone had given me that much time and attention to talk about prostate cancer and how to approach its treatment – a story in its own, frankly), and he laid out a plan of treatment.

The plan involved essentially throwing everything he could think of at the wall and seeing what worked: a dozen vitamin supplements and herbal formulae taken 2-3 times a day, along with modified diet (thank you to Rachelle) and increased exercise (fortunately, the Bay Area’s winter was coming to an end as we began, so I could get back on my bike for daily commuting). If you are interested in the specific treatment plan, please email me (although I wouldn’t do this without working with someone who knows what they’re doing).

I’m not what you would consider a woo-woo sort of guy. It took me two years after moving to California to get into a hot tub, for pete’s sake. And alternative medicine? Never thought of it, really. But the more I read about prostate cancer, the more it became clear that this is a very poorly understood disease (or maybe more accurately, collection of diseases). And that there was growing evidence that some of these complementary treatment approaches might actually influence the course of the cancer, with minimum side effects. Plus, because prostate cancer can be a relatively slow-growing cancer, as seems to be the case with mine, I had some time to do something about it.

Other than the money (not an insignificant issue) the question was, why the hell not try this?

And since Michael and I knew that I would be getting a follow up PSA test in the spring, it gave us a date to aim for, so that we could see whether or not this treatment plan was having any effect.

So I started popping a lot of pills. Three times a day.

I got the results for the first follow up PSA test in late May: it came in at 1.74 – down from 4.01 in December. This is substantially lower than at any time since I started getting my PSA tested about 5 years ago. Now, I’m about to go in for a follow up PSA test later this month, and we’ll see what’s happened to that number.

When I met with Gary the urologist after I got those first test results, he and I agreed that we would treat this as the new baseline for tracking prostate health. We also talked about whether any of these supplements might be masking or suppressing data, ie, that some of what I’m taking may have weak estrogenic effects that affect PSA results. If my PSA increases in the next set of tests – say above 2 or 2.5 – then we’ll know much more about the progression of the disease, and go from there.

Given my family history, I’m still living with the assumption that at some point I will have to take more aggressive steps, but the longer I can postpone that moment, the better. My goal in all this has been to do what I can to slow down, as much as possible, disease development.

I can’t point to any other change in lifestyle or overall health to explain the drop in PSA score; the only new variable I added to my life mix was this treatment plan. Until future PSA data suggests otherwise, I’ve concluded that this approach – a mix of herbal and vitamin supplementation, plus diet and exercise changes – did cause the drop in PSA score.

So back to Jeff for a sec. One of the things that happens when you let folks know you’ve got cancer, is that everyone has an opinion about what to do, what not to do, the best doc, this drug, that pill, etc etc. And with prostate cancer, there is so much information of varying quality out there that the problem isn’t lack of knowledge, it’s too much. Having a good filter is really key. Fortunately there are some terrific listservs and websites that helped me build a filter for my situation – and I’m assuming, with Jeff’s google-icious connections, he’s got an even better filter in place. Having a good doc helps enormously, too, one who’s willing to really sit and talk through options.

About Imus? He may be completely off the wall with his “pepper treatment.” But the fact is, one of the things I’m taking every day is curcumin, the peppery ingredient in tumeric, which does, apparently, have some cancer-prevention and/or suppression qualities. Of course, full-scale testing hasn’t happened, and it’s possible it never will. This piece from the LA Times last fall gives at least one reason why:

Bharat Aggarwal, professor of cancer research at the University of Texas’ M.D. Anderson Cancer Center in Houston [me: one of the best cancer treatment centers in the country] and a leading curcumin researcher, says that big, expensive human trials of the compound haven’t been done because drug companies can’t make money selling a curry spice.

So who knows. No one guards the truth these days, even when it comes to cancer. Maybe even especially.

One other thing: Jeff used some of the same language that my brothers and I used to talk about prostate cancer. “It is what it is.” Which means: deal with the cards you got dealt. And “If you’ve got to get cancer, this is the one to get.” Which means: what are you so worried about? Man up! You’ll tough it out.

Okay: these are all useful messages for guys who have that first “Oh shit, I’m gonna die”  fear response. Because it helps you get through the shock. You will live. You will get through it. You will figure this out.

But there’s a dark side to this language of normalization. The fact is, it is frightening. When you get a diagnosis of cancer, you do confront your own mortality. You do feel anger and how unfair it is. And you do feel powerless. It is, yes, unmanning. I wrote this and this, while I was trying to work out all this a while back.

So there’s a backwash to all that “it is what it is” messaging: a little ways down the road, Jeff, watch out for unexpected anger, fear, anxiety. That’s all normal. You’ll get through it. Your wife and kids will love you no less.

And then, you can get on with it.

One Response to “Jeff Jarvis, prostate cancer, and me”

  1. martin cohen Says:

    i would be most interested in the specific supplements you have been taking. i realize this is a somewhat ‘brave new world’ of hunches but would like to know what others are trying, esp with your apparent successes so far.. most appreciated martin cohen from new york city

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