A Prostate Cancer Case Study: Part 3
Jim Flood discovered he had an aggressive form of prostate cancer in 2008. In his series, "You’re Only As Good As Your Last PSA," he details his journey from being diagnosed to receiving treatment to coping with side effects. Read "A Prostate Cancer Case Study: Part 1 and Part 2." You can also read Part 4.
PSA creeping up
At the end of December 2009, the PSA was still 0.14. I was just out of hospital with my new Addison’s diagnosis and concentrating on research into nutrition and diet. These, along with exercise and meditation, or "serenity," were emerging as the 3 pillars of a DIY approach to cancer.
My hope was that the radiotherapy and my ever-improving diet might somehow combine to bring the PSA down. But in April 2010, it went up to 0.19. In August it was 0.2, and in November 0.3. Still very low, but what mattered was the trend. At the hospital they explained that after radiotherapy there was often a "bounce" effect; in my case it only ever bounced up.
A depressing time
2011 was worse. In March, the PSA was 0.5, in July 1.4, in October 3.7, and by January 2012 it was just above where it had been at diagnosis: 9.5. At the hospital they spoke of the "doubling time;" if the PSA doubled in 3 months, intervention should be considered.
In 2 of the quarters in 2011, it had nearly tripled. I drew a graph and found it was a perfect exponential curve – like the tiger analogy, impressive but not really something to be proud of. In fact, it was depressing.
My diet was improving all the time, in line with what we were reading, with "good" foods replacing "bad" foods, and I walked, danced, and cycled regularly. Yet the PSA was heading in the wrong direction at an accelerating rate.
At this point, the hospital concluded that the 2 potential cures – surgery and radiotherapy – had failed. I had finally relapsed, and the disease could now only be "managed." This would mean hormone treatment, which for all sorts of probably confused reasons I was keen to avoid.
Feeling pressure to do hormone treatment
The exponential PSA rise during 2011 slowed suddenly in May 2012 when it scored 10, up from 9.5 in January. The upward curve appeared to be plateauing. I clung to the hope that the diet was at last kicking in. But the upward trend continued, albeit at a gentler pace.
At hospital visits, the pressure was on me to start hormone treatment. Their most persuasive argument was that if the PSA got much higher than 10, especially without an actual prostate gland to call home, the cancer was likely to spread ("metastasize," in the trade). Its preferred destination would be bone, probably the spine.
What hormone injections would do was starve the cancer of its principal fuel, testosterone. It followed that the main side effect would be to remove what was left of my sexuality: hello hot flushes, bye-bye libido.
In July 2012, the PSA was 12.7, in November 13, and in February 2013 15.6. The medics I saw at the hospital took to writing letters after my visits, testifying to their efforts to persuade me to start hormone treatment and making clear that my refusal was all that stood in the way. I was simply hoping that my diet and exercise regime would ride to the rescue.
Everyone seemed to agree that a PSA of 20 was the end of the line. In May 2013, it was 19.5. A scan appeared to show that the cancer had indeed spread to the lower spine and a rib. I knew the game was up. At the hospital visit on May 23, 2013, I had the first 3-monthly injection.
Finally, some good news
Tuesday, December 9, 2014
I got some good news this morning: my PSA was 0.01, all but undetectable, for the fourth quarter running. That does not mean the war is over – it never will be – but it gives me enough of a new lease of life to motivate me to take up my digital pen.
PSA, by the way, stands for prostate-specific antigen. The PSA test is a blood test that measures the state of your prostate cancer. But it is fallible. More on that later.
Coping with side effects
About 5 years after the radiotherapy, I began to notice signs of fecal leakage, a.k.a. "skids." I was baffled by this until I read in the prostate cancer support magazine of a similar case that had eventually been diagnosed as radiation-induced fecal incontinence, or pelvic radiation disease (PRD), to give it its deceptively grand title.
I consulted the GP, was investigated with the help of a sigmoidoscopy (an in-depth TV probe where the sun don’t shine), and PRD was confirmed. Basically the radiation had burnt the inside of my bum, which was now losing feeling and control.
Too late, I discovered that PRD is, in fact, a well-recognized consequence of radiotherapy. Exactly when this revelation dawned on the medical establishment is a good question. Certainly we were never warned about it.
In my case, it has continued to worsen. It now needs constant management and impedes many activities, especially out of doors. I was reminded again of Hippocrates’ advice to his fellow medics in Ancient Greece: "First, do no harm."
Who did you talk to first about prostate cancer after your diagnosis?