Looking Into Prostate Cancer

Prostate cancer usually–but not always–grows slowly. It is best treated if still prostate-contained, but it usually manifests no symptoms until it’s spread beyond the prostate. Fortunately, medicine has developed early screening tools. In a digital rectal examination (DRE), the doctor inserts a finger into the rectum (often after an embarrassed apology) and feels for enlargements or other abnormalities.

Only some tumors can be felt. About 1990, doctors added a PSA (prostate-specific antigen) test. PSA, measurable through a blood test, is produced only by prostate cells. Cancerous cells produce more than normal cells. PSA level can be a red flag long before other symptoms develop. (1)

Based on my PSA; the type of cancer found in my biopsy; and my age, health, and best-guess life expectancy, I was a candidate for virtually every major treatment: surgery,

external beam radiation, proton beams, brachytherapy (implanting radioactive “seeds”), freezing the prostate, hormones, “watchful waiting” (monitoring but doing nothing else). No treatment is unequivocally regarded as “best.” Each has advantages and definite side effects and disadvantages.

SELF-EDUCATION

pcI began to seek every source of information and support. I’m grateful for all of them. But each can also provide biased, incomplete, or misleading information. Here’s my experience:

* MDs. Choosing the practitioner may be more important than choosing the treatment. I want my only body worked on by someone who’s competent, experienced, up-to-date, well-practiced. The best books and websites (see access) offer good guidelines and questions to ask when choosing a doctor, but they can’t make the choice for a person.

Caveats: Urologists are trained as surgeons, and usually recommend surgery if it looks viable. Radiologists tend to favor radiology. Etc. Getting additional opinions is crucial. Doctors sometimes understate problems (“this may hurt a little”). Nurses are often better sources of information about how much it will hurt, how long it will take, what to expect.

* My partner. Along with all the other support she gave me, including camping out on the hospital room floor after my surgery, my wife Pat became part of my decision process. We attended medical consultations together, compared notes, and weighed options. She’s the person who knows me best, and sees through me best. Fairly early, we began to talk about “our prostate.” And she was going to live with the consequences of my decision, which could be short- or long-term impotence, loss of libido, depression, even the small–but real–chance I could die during treatment.

There’s another good reason to include partners; they often have as much difficulty dealing with PCa as do patients. In a recent Memorial Sloan-Kettering study more wives than patients displayed a host of stress indicators, including fatigue, worry, depression, loneliness, and trouble sleeping (the studies I’ve read about all focus on wives; I haven’t seen any that address unmarried male or female partners).

* PCa survivors. Some of my very best sources of information were PCa survivors, who were generous enough to talk frankly, knew what I was feeling, and knew the answers to questions they wished they had asked.

Sharing the news of my cancer was not easy for me. But time after time, someone replied, “Oh, I’m a survivor,” or “I know someone you can talk to.” I talked with friends and friends of friends who had chosen every major therapeutic option.

I also found a PCa support group that meets weekly at our local hospital, The group includes veterans of just about every procedure–some with better results than others. Some members have made a near vocation out of tracking new PCa research. All are forthright, openly sharing intimate details and feelings.

Survivors caveat: Some people get defensive about the procedure or practitioner they chose. Others are just angry. Support groups can be skewed toward people experiencing problems (men often stop attending if they aren’t having complications). I learned to talk to as many people as I could, and to take no one’s experience as “typical.”

* Internet self-help groups. Tom Ferguson (“Online Health,” Whole Earth, Winter 2001) was right. Web-based groups can be an excellent way to contact a large circle of highly motivated fellow inquirers, pick up strategies, learn about new research, or post specific questions.

Same caveats as above, without the chance to read expressions and body language.

* Reading. The material available in books, articles, and the Internet can be overwhelming, and it keeps growing. My best tips on what to read have come from survivors.

Caveat I: The field keeps changing. Anything (especially a book) more than about five years old is likely to be out of date.

Caveat II: It may be that people with more dramatic problems are more likely to want to write them up. In any event, everyone’s experience is different. Virtually every account I read contained at least one bad experience that I didn’t have. On the other hand, if I ever write up my surgery and recuperation, I’ll be able to tell some scary stories I haven’t heard from anyone else.

Pat and I eventually chose surgery. Part of our decision was rational: If the cancer was contained within the prostate, surgery offered the best chance of getting it all. Comparable long-term survival statistics aren’t yet available for many other treatments. Surgery allows examination of the prostate to get the most accurate picture of the cancer’s spread. Treatments such as radiation can usually still be tried after surgery, but often not vice versa. Part of our decision was not so rational: we both just felt more negative about being irradiated than being cut.

Was I right to go for a “hit it with everything you can” strategy rather than hope the cancer would be slow-growing? Post-op pathology of my prostate revealed some much more aggressive cancer than the biopsy had showed; it had extended into, but not through, the prostate’s capsule. I’m glad I didn’t wait. Two months post-surgery, my PSA is undetectable. I’ll need to keep monitoring it forever, but it’s where I want it to be now. Continence? No real problem. Potency? It’s too early (I hope!) to know; the nerves were spared, but they can take months to heal. Did I make the right decisions? I’ll never know. I made the best one I could, with the information at hand and the help, love, and prayers of lots of friends. I couldn’t ask for more.

PROSTATE CANCER FACTS

About 190,000 men in the US will be diagnosed with prostate cancer this year. 31,000 are expected to die of it.

One in six American men can expect to be diagnosed with prostate cancer during their lifetimes.

Asians have the lowest prostate cancer rates in the world, but their risk increases dramatically when they move to Western cultures.

African Americans have the world’s highest prostate cancer rate. The percentage of African-American men who develop prostate cancer is 40 percent higher than that of white Americans. Black Americans die from PCa at double the rate of whites.

The risk of prostate cancer is twice as high when one close relative has it; five times as high when two close relatives do.

In one study of autopsy results, 30 percent of men over 50 and 80 percent of men over 80 had cancer in their prostates, though many were never aware of it.

Research continues on diet and lifestyle factors that might encourage or prevent PCa. High-fat (especially animal fat) diets seem bad. Selenium and Vitamin E, and perhaps soy, appear to help, but nothing is definitive.

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