Entry for 14 September 2010:
Last January, I was diagnosed with prostate cancer, apparently early stage. I did not record here my experiences during this process; I chose not to circulate them in this forum. Why? There were many reasons, but the principal were the uncertainty; my own discomfort and embarrassment (it somehow felt like a personal failing); and because I didn't want this to turn into a cancer blog. Thus, I chose not to reveal this information here. However, because this has been the major process going on in my life throughout this time, it has had the unwanted effect of pushing this blog to the side. In this entry I attempt to remedy this situation by offering a summary of my process over this time.
In the USA, men are routinely screened for elevated PSA from age 50 onwards, and I'd been tracked for slightly elevated PSA scores for the 6 years before we moved here. PSA screening isn't done routinely here, because of its high false positive rate and the resulting risk of over-diagnosis and unnecessary treatment. Now my elevated PSA (7.8) had been followed by two biopsies, the second of which identified early stage prostate cancer in a small part of my prostate. What was I to do?
There is currently a controversy -- on both sides of the Atlantic -- about what if anything to do about early stage prostate cancer. Here in the UK, NICE guidelines advocate Active Surveillance, essentially continued testing until it progresses to a more advanced stage, while some in the US are beginning to question indiscriminate prostatectomies for this stage of prostate cancer, because a large majority of men diagnosed with it die of something else first ("die with it, not of it").
What I did was to read a lot studies. It turns out the prostate cancer outcome literature is far messier than the psychotherapy outcome literature, because the cancer generally grows so slowly that 15-20 year follow-up studies are needed. Also, it turns out that most early stage prostate cancer is diagnosed in men 75+ or older, only 5% of whom will die of it. Eventually, I found a study of a European study tracking men of my age with my stage of prostate cancer for 8 years: I could see that death from prostate cancer leveled off a year or two after surgery, but with Active Surveillance the death rate kept trending upward in a shallow but straight line. Extrapolating from these data and given my life expectancy (I was 59, otherwise healthy, and could expect to live at least another 20 years), there was a better than even chance that this would kill me before something else did. Furthermore, I was more likely to be able to make a full recovery, with less chance of recurrence, if I had the surgery now rather later. I decided to go for it, in defiance of the NICE guidelines.
The issue of what kind of treatment was also problematic, and has odd parallels to the psychotherapy outcome literature: There are several competing treatments, with no compelling arguments or evidence to support any particular one, but a lot of strong opinions. Paralleling psychotherapy research, however, the crucial variable appears to be skill of the surgeon, indexed in this case by their having carried out whatever procedure it was hundreds of times previously. The person of the surgeon is more important than the procedure itself. On this basis, I decided to stay in Scotland and to receive an older form of the surgery at the hands of a highly skilled surgeon, rather than attempt to fly back to the North America for a more modern laproscopic-robotic surgery.
More importantly, as I delved into all this, I learned (a) that prostate cancer is now considered by key researchers like Neil Fleshner and his team at the University of Toronto to be primarily a nutritional/lifestyle illness, and (b) that there is a pretty good chance that the cancer had already spread to other parts of my body micro-metastically. This meant that surgery, of whatever kind, wasn't going to be enough; I would have to change my lifestyle: I switched to a mostly vegetarian diet (the exceptions being fish like salmon and free range, organically grown chicken); began making sure I got at least 7 hours of sleep each night; went on about 10 micro-nutrients with research evidence supporting their anti-cancer properties; and substantially increased my level of exercise. I also starting drinking alkalinizing water (at the encouragement of my friend Leigh McCullough), and tried in general to reduce the level of stress in my life.
I'd like to say that these measures reversed my prostate cancer and removed the need for surgery, but unfortunately that turned out not to be the case, although further PSA testing clearly indicated that its steady progression was halted and remained steady for the past year after years of steady increase. They did, however, ensure that I was in peak physical condition going into the surgery.
Finally, on the 3rd of September, I had a radical prostatectomy, that is the complete removal of my prostate gland. This is a delicate, painful, major operation: I was under anaesthetic for about 5 hours and hospitalised for 4 days; the catheter will have to be in for 3 weeks, and I won't know for some time after that how much incontinence and impotence I will be left with long term. In addition, although I've been assured that the surgery was successful and appears to have removed all of the cancer, I don't have the pathology results yet. Ultimately, I'm not likely to know for years whether the combination of surgery and life style changes will have prevented a recurrence of this cancer. But in any event, I will have done my best.
So that's the story. I will be off work for at least 4 weeks through the end of September and possibly for much of October. It's my hope to be able to continue regularly to write this blog during this time, but at this point, in the meantime, really my only job is to heal as best I can: Drink a LOT of fluids, to prevent blood clots and to keep my catheter open; to take daily walks around my neighbourhood (for the same reasons); to sleep a lot (8 - 9 hrs / night); and to be at peace. Mostly, I take my days slowly, and listen a lot to my body. This makes it a special, almost holy time, like being on extended spiritual retreat, communing and listening to what my body and spirit are saying. In fact, it is a marvelous gift to be given this time for healing and reflection.