Tuesday, February 26, 2008

Diagnosis: This Can't Be Happening to Me

I’ve never met anyone who wasn’t blindsided when they were diagnosed with prostate cancer. Most men feel healthy when they get the news. If they have any symptoms, they assume it’s a typical prostate problem. The prostate is a touchy little gland, one that most men can expect to have some kind of trouble with at some point in their lives. It's a bomb waiting to go off. Prostates get enlarged, inflamed, and infected, and it’s not always clear why. The prostate is a key part of male sexual health, and yet there’s still not a lot known about why it acts up. Treatment is often a guessing game, and cancer is just one of several things that are routinely checked when things go wrong.

My story is unusual because of my age. And in comparison with many men, I was lucky to have an early diagnosis. In the summer of 2006 I had a physical, and as I have for many years, had a DRE* (digital rectal exam). The doctor didn’t say anything was unusual. I think he just commented on the normal size of the prostate. But he suggested that because I was in my mid-40s I get a PSA** test as well, which was new for me. I don’t know if there was something odd in the DRE that prompted the doctor to request a PSA test, but it's possible that he thought something was off. So on August 1, 2006, I was tested and my PSA was 2.7 – a safe number, but on the high end of acceptable for someone my age. He suggested that I check it again in a year.

I would have waited a year for another DRE and PSA test if I had not found myself at a urologist's office five months later. I had finally decided it was time for a vasectomy after several years of indecision, so on December 15 I went in for the procedure. Dr. A, the urologist, seemed competent and cheerful as he snipped and tied and cauterized. I was, of course, paranoid about such things being done in a delicate place, but I went home and followed instructions for applying ice packs and taking it easy for the weekend.

In the next two weeks the swelling and bruising faded, but so did my erections. I figured it was mostly a psychological reaction and tried not be frustrated. I was looking forward to getting the all-clear so we could proceed with an unencumbered love life. No more condoms, lots more spontaneity. But it never happened.

By mid-January I was so frustrated with weak erections that I scheduled a consultation with the urologist for ED and possible prostatitis. By this point I was sure he had snipped the wrong tubes, cauterized a few too many veins, or caused an infection. But as time passed, a worse problem was that I could feel my prostate most days. It felt warm and sometimes uncomfortable. I had never been able to identify where it was before, but at this point I felt like I was sitting with a hot walnut in the middle of my pelvic region.

The urologist and I talked first about ED and the possibility of prostatitis (a general and vague term for any inflammation or infection of the prostate). His diagnosis checklist included a PSA test and some other blood tests to determine if there was an infection. But when I told him about the glowing prostate sensation, he decided to do a DRE, almost as an afterthought. He wasn't happy about it. The size is OK, he said, but on the left side the texture is odd -- it feels flat and a little harder than the rest of the prostate. So he insisted that I needed a PSA test before prescribing an antibiotic or anything else. Just to rule out something more serious than inflammation.

The PSA was 3.7 this time, a significant rise in seven months. Dr. A left a phone message at my home that he wanted a biopsy. I had heard enough about them to know it would not be pleasant, so I called back and tried to talk him out of it. He just wanted to rule out cancer, he said, even though he didn't think it was likely. Then we could move on to treating the inflammation. I put off the biopsy for another week because of some work commitments, but finally submitted to it on February 21.

In retrospect, it's a good thing Dr. A insisted on the biopsy, but at the time I was annoyed before and furious after. Some urologists can make it a little less than horrendous, but he turned into a cold, indifferent jerk (OK, maybe my perception is a little colored by the experience). "This will be uncomfortable" he said as I lay on my side, knees drawn up toward my chest, butt exposed. "Excruciatingly painful" is what he should have said. He pushed in a rectal ultrasound with one quick motion and I almost passed out. I groaned loudly and tried to breathe through the pain, which was more intense than anything I imagined. Then I endured 10 clicks of what sounded like a staple gun, each time piercing my prostate with a needle. The actual needle pokes weren't too bad, except for two that seemed to hit a nerve and shot pain down along my urethra. Those ones HURT. In all, it was about 15 minutes of blunt, undignified pain. And then they sent me home with reassurances that I might see a little blood in my urine and semen for a few days.

For a day I peed pink and had no interest in finding out about the semen. I was taking the antibiotic Cipro and slowly the discomfort subsided. When I finally did feel up to sex a few days later, there wasn't just a little blood in the semen -- the semen was blood. Bright red, lots of blood. That was scary, and over the next week or two the blood went from red to brown, but it was still blood. When I could ejaculate, that is. I was still having a very mixed experience trying to maintain an erection.

But it didn't really matter because Dr. A dropped the big bomb on Friday, February 23. He called me at work mid-afternoon. The results were back, and he was sorry to tell me that two of the ten samples contained cancer. He told me to bring my wife and meet with him the following Monday at noon. "You won't hear anything else I tell you now anyway, so let's talk about it Monday" he said matter-of-factly. And that was the end of the call.

So I sat stunned in my cubicle, trying to wrap my mind around the biggest shock of my life. The doctor had called my wife at home first, with the same concise news, so she called me immediately and we were stunned together. I didn't know what to do. I e-mailed my manager, said I had just been told I had prostate cancer and would be going home early. I walked out to my car without speaking to anyone, and drove home in a daze.

And I passed the weekend in plain, raw panic. In December, all I wanted was to stop using birth control to free up our sex life. In February, all I wanted was to wake up from a horrible dream: I had cancer.

*DRE: the digital rectal exam is the widely despised part of a physical exam in which the doctor puts on rubber gloves, lubes up a finger, and pokes into the patient’s rectum to feel the prostate. If your doctor is like the one I had for 15 years, he’ll try to lighten the mood by saying something dumb like “OK, bend over and crack a smile.” This is a standard screening method to determine if a prostate is cancerous or enlarged. If a lump or irregularity is found, a PSA test will likely be ordered. If the PSA is elevated, a biopsy is generally the next step.

**PSA: prostate-specific antigen, a substance secreted by cells in the prostate that makes its way into the blood in minute quantities (it’s measured in nanograms per milliliter – that’s billionths of a gram in a big drop of blood). This test has become the standard for detecting prostate cancer. PSA can be elevated due to inflammation of the prostate as well as cancer, however, which leads to frustration when biopsies are cancer-negative. An inflamed prostate produces more PSA; cancer cells produce more PSA than healthy prostate cells. In general, a PSA level above 4 raises eyebrows unless there’s already a history of enlargement and inflammation. Many doctors use an age-based scale, so a man in his 40s is OK with a PSA of 2.0 or less, 3.0 or less for men in their 50s, 4.0 for 60 and older, etc. That’s why my 2.7 test at age 46 was considered acceptable, but a 3.7 six months later was a concern.

It’s hard to find a single, balanced source of information about PSA testing. Although it’s dry, try the American Cancer Society site for starters. There are a number of web sites that will try to convince you that PSA testing is pointless, that the numbers aren’t reliable, that you should never get a biopsy based on a PSA test, and so on. I’ve even had a man tell me his doctor will never order a PSA test and will only go off a DRE for detection. That may be fine if you have a low-grade tumor that isn’t growing, but I’m relieved that my urologist insisted on a PSA test and biopsy. My tumor was very aggressive and waiting a year or two could have allowed it to spread or even metastasize.

Sunday, February 24, 2008

The Arrogance of Health

I always thought I'd live into my 70s and die from a neurological disease. The only serious illnesses in my recent family history have been ALS (Lou Gehrig's disease) and Parkinson's. The only cancer I thought I was at risk for would be skin cancer, due to my Scandinavian heritage. Any other cancer has just not figured into my life plans. I've known only a few people who had cancer, and like the average person I tended to withdraw when the subject came up -- too scary, too uncomfortable. I didn't know how to react or what to say.

A friend spent about six months in treatment for colon cancer when we were both in our 30s. He pulled through a very difficult series of operations and chemo, but I mostly ignored the situation. I visited him once in the hospital after part of his colon was removed. We never discussed his treatment in depth, let alone his feelings about the experience. I never really asked how I could help

My wife has a good friend from college who was gradually crippled from a rare form of ALS. She lost the muscle tone and then nerves in her appendages over a nearly ten-year period. An artist, she was reduced in the end to creating images on a computer by placing her inert hand on the mouse and shuffling her upper body around to move it so she could draw. She is the first person I'd known in my life who talked about her impending death, how it affected her, and what she wanted from others. Again, it was a very uncomfortable situation that I did not know how to react to in a meaningful way.

To borrow a phrase, I have been guilty of the arrogance of health* for most of my life. I was unable to empathize with others who had serious illnesses, except in superficial ways. I put out of my mind any thoughts about what it would be like to be in their position, and unconsciously prayed my gratitude that it wasn't me in the hospital bed. The healthy do not, as a rule, project their thinking into the situation of the critically ill. It may be a basic rule of survival -- don't think about illness, focus on health and happiness. But it is also a kind of arrogance because we assume that we'll stay healthy if we want to.

The few health problems I've had have generally been easy to understand. I could blame myself for being overweight if I ate too much and exercised too little. I could blame my Scandinavian ancestry for depression and blame my family for mono -- most of my siblings have had it. I could blame the mono and resulting fatigue for ongoing depression as well. There was always, it seemed, an explanation. But there's no reason I should have prostate cancer -- no family history, I eat well, exercise moderately, and have generally been healthy.

My diagnosis was a personal affront. I was healthy! I hadn't done anything to deserve this. I wanted to look for reasons, but there really are no reasons for most cancers unless you want to believe that God is out to get you. Or if you want to get really crazy, start believing that you deserved it because of personal weakness or some character fault. Or for extra credit, try buying into the alkaline diet theory. Once my friends and family heard about my diagnosis, all these theories and more came out of the woodwork. I was obviously holding on to too much anger, or ate too much animal protein, or had a vitamin D or selenium deficiency, or subconsciously I wanted this to happen. If you follow any of those theories for very long, you start to lose it. The truth is, cancer just happens. You can’t give it to yourself, and you can’t will it to go away. But people like those theories because it helps them believe that it’s possible to have control over something as out-of-control as cancer.

When you're healthy, you have respect for cancer patients. You admire them for their courage. You encourage them. You tell them they're doing great and you know they'll pull through it. You tell them to fight it. And you silently pray your thanks that it's not you. But only very, very rarely do you enter their world and try to understand what their experience is like. That's the arrogance of health.

*I first read this phrase in Marvin A. McMickle's book Battling Prostate Cancer: Getting from "Why Me" to "What Next" (Judson Press, 2004). The phrase has been used by others, judging from a quick Google search. I recommend this book, written by a pastor who offers some fine spiritual insights and some basic information about PCa.

Saturday, February 23, 2008

When the Bomb Goes Off

One year ago today, I got the call from my urologist telling me that my prostate biopsy was positive for cancer. Looking back, I'm amazed at how completely my life was turned upside down and permanently changed. Prostate cancer is the second most common cancer in American men, and yet I knew almost nothing about it at the time. In those first days that seemed like weeks, I faced a future of treatment decisions, the agony of waiting for test results, and the pain of figuring out what to do with my life now that cancer is in the picture. That's what this blog will revolve around: my experience in living through this disease. I’ll also include general information about getting diagnosed and choosing between the different treatments available, but mostly it’s a personal look at how it feels to have the ol' prostate bomb explode on you way too early in life.

There are some web sites, email groups, and a few blogs with prostate cancer support and information. Over 220,000 men in the United States alone are diagnosed every year, but there is a surprising lack of public awareness about the disease. Most men are in their mid-50s, 60s, or 70s when diagnosed. I was 47 when it happened to me. One in six men can plan on being diagnosed with prostate cancer at some point in their lives. Fortunately, only a relatively small number die from it – fewer than 30,000 men a year in the United States. Treatments are generally quite effective, especially when the disease is caught early, and they give men enough time to live with a decent quality of life and die of other causes.

In this blog I’ll write about the experience of being diagnosed and all the ups and downs I went through and am still going through. I hope this story will be useful to other men, especially to those with an aggressive form of prostate cancer. The majority of men with this cancer get treated and can more or less walk away with little or no risk. If you go 5 years with "undetectable" test results, most doctors will tell you you're home free. I am not expecting to hear that any time soon: my aggressive form of the cancer (Gleason score 9*) puts me in a much less favorable category, and my odds for staying "undetectable" are lower.

So what can you do? Get educated, find the best medical team available, and start learning to live with uncertainty. Prostate cancer is usually slow-growing, and if diagnosed early, you have time to make treatment decisions without rushing in to anything. You’ll get through it. Life will be different, but in time you’ll learn to accept and embrace the changes. And possibly the most important thing is to learn to speak the language of hope as you go through the experience. Hope is everything as you deal with cancer. Don’t let anyone take that away from you.

*Gleason score: the rating system, from 2-10, of how aggressive prostate cancer cells are. Gleason 8, 9, and 10 are considered very aggressive, with 6 and 7 considered moderate. Here's one article explaining the intricacies of this score.