Sunday, April 20, 2008

Tolerating Uncertainty

In your average Hollywood cancer film, things are nearly always cut and dried. “I’m sorry,” intones the solemn doctor, “there’s nothing we can do.” It would take too much screen time and distract from the storyline to show everything that can happen between early detection and late-stage cancers. Instead, the noble soul with “incurable” cancer comes to term with the inevitable, and everyone around them, including the audience, weeps.

So it’s not surprising that so many people, when exposed to a friend or family member’s cancer diagnosis for the first time, go straight to panic mode. They freak out. They can’t deal with it. Older people especially have memories of cancer from decades past, when people were diagnosed (usually very late stage) and then slowly (or quickly) died. In spite of whatever you tell them about your cancer diagnosis, some of your friends and family start planning your funeral, mentally. Often they back away quietly and you don’t hear from them for months or years. Or, no matter how many times you tell them the treatment is effective and you feel fine, they ask “Are you tired? Have you been able to work?” every single time you see them. They are seeing that film again, the one where it takes less than two hours to go from diagnosis to death.

Of course cancer is a frightening event. You can’t help but panic when you are told that cells in your body have declared war against you, that they are out of control and won’t die, and if left unchecked they will invade healthy organs and tissues and eventually shut down the body’s systems.

But in between an early diagnosis and death, there are years of living and a whole lot of one thing: uncertainty. Medical advances in the last 40 years have created incredible tools for finding and killing cancer cells. But they’re still not completely reliable or useful. Some cancers are relatively easy to detect. Some tumors can be located easily. Others are difficult to pin down. And even when you think you know what’s happening, the unexpected happens.

A close family friend was diagnosed with a tumor surrounding his lungs in 2006. It was of course traumatic for the family, and as friends we were not well prepared. He was only the second person I knew well who had cancer. The frightening thing about his tumor was that it was “of unknown origin.” The oncologists couldn’t say where it started or why. So they treated it with chemotherapy, and for about a year it was effective. The tumor shrank. Quality of life returned, his hair disappeared. Our friend and his wife went on a short vacation in the summer of 2007, because things were looking good. But when they returned, he was having trouble breathing again. The tumors were back, and this time the chemo was less effective.

When I was diagnosed, this couple generously came over to our house one night and talked about cancer. They were in a good place at the time, and could laugh a little and talk with some perspective. And they shared a memorable analogy: dealing with this cancer for them was like opening a big, wrapped package. At every stage of diagnosis and treatment they were able to pull off another layer of wrapping and see a little more of what was inside. After different tests and multiple rounds of chemo, it was becoming clearer what the cancer was about and how it might be treated. But during the entire process, and really, up to the end of his life, it was never completely clear what they were dealing with. Why did the cancer retreat for almost a year, then return? Where did it come from? Why couldn’t the oncologists find an effective treatment?

As you go through a diagnosis, submit to multiple tests, and then try to decide what the best treatment will be, there are increasing levels of anxiety that you deal with. My diagnosis was not unusual – my cancer was somewhere in the middle, not as easy as many but not nearly as bad as others. Prostate cancer can be detected by DREs and PSA tests, and confirmed with biopsies. But you can’t easily tell if it has spread or how far. X-rays and scans can’t find or confirm microscopic tumors, and when prostate cancer spreads, it starts in minute quantities. A few cells drift through the lymphatic system or into the bloodstream, and it takes months or years for them to have grown enough to be visible in a scan. That’s why PSA testing is the standard tracking method: for almost all prostate cancers, the cells produce PSA and thus can be monitored. If the PSA goes up, the cells are spreading. But you won’t know where or how extensive until there is significant growth. Even then you may know where the tumor is only because it creates pain in the bones or other tissues.

But that’s all late-stage talk. Early diagnosis still has its share of uncertainty. From February 23 until April 6, the date of my prostatectomy, I went through multiple rounds of uncertainties as different tests added little bits of information.

The first major test after the biopsy was a bone scan. My Gleason score was 4+4, which means the tumor is aggressive, which means the cancer could have spread to bones already. (It can spread to soft tissues like lymph nodes, but a bone scan only detects problems with bones.) So Dr. A scheduled me at the local hospital. On Thursday morning I was injected with a radioactive tracing substance, which would move through my bloodstream and settle in any bones where there was damage or unusual activity. They asked whether I had broken any bones in the past, because any damaged bone would show up in the scan.

A few hours later, I returned and was put into a huge gamma scanner machine, laying on a table that glides into a large tube. They wrapped me up securely and told me to hold still for an hour, then the table very slowly moved through the tube as the scanner hummed. I was wrapped up, head propped on a pillow and turned sideways, hands snug in a towel so I could relax.

The scan wasn’t all that bad. The technician told me that, if the specialist monitoring the test saw anything that looked questionable, they might need me to stay for an additional x-ray. But after listening to a 70s rock radio station in the semi-dark for almost an hour, I got off the machine, put back on my ring and belt and whatever was in my pockets, waited a few minutes, and then was told I could go. They even gave me a small negative printout of the scan, with my bladder glowing brightly compared to everything else. (The radioactive tracing stuff is excreted in the urine within a day or so.) The print was too small to see any detail, but was that a light spot on my hips? How about my right knee – was that where I’d injured my knee and that’s why there was a hint of light?

The scan was on a Thursday, and the following Monday I was in Dr. B’s office for an evaluation. Even though I had no obvious reasons to be concerned – early detection, low PSA, they didn’t ask me to stay for extra x-rays – I fretted for those four days. If the bone scan did pick up anything, it would be bad. Surgery would probably be out of the question, and I’d go straight to hormone deprivation for treatment. The possibilities seemed huge and horrible. I wanted to call the hospital and ask if they’d tell me the results, then I’d remind myself that they probably wouldn’t and that I was overreacting anyway. Back and forth, I worried myself into a state of ongoing anxiety.

It’s that time of worry and waiting that you have to adapt to with a cancer diagnosis. I found out later that I could have asked the hospital for the results – all medical test results are the property of the patient, and they can’t withhold your own information from you. As long as the reviewing physician or specialist has signed off the report, you can get your results. But you may not want them if there’s no one to interpret for you. Imagine the level of stress if I had received a report that there were suspicious spots, but no doctor to discuss that with.

That bone scan was just one step in living with uncertainty. It definitely brought home to me the seriousness of the diagnosis. In retrospect, I can see that I worried much more than was needed, but how do you know? When you’re living a day at a time through a huge life change that is potentially life-threatening, there’s no easy way to know what to expect or when to panic. I suppose the best thing about that bone scan was that, of all my diagnostic tests, it was the only one that came back with good results, really good. At least we could rule out metastasis.

A great book to help you deal with the people in your life who can’t handle cancer is Help Me Live: 20 Things People with Cancer Want You to Know by Lori Hope. The author is a lung cancer survivor and used extensive interviews with cancer survivors to create a list of 20 rules for helping people with cancer. Ultimately, there’s no single way to approach it, but the book is great for getting perspective on what to say to people, when to let them know they’re not helping, and how to encourage them to be truly supportive.