How A Couple Got Together To Fight Prostate Cancer

You’re leading a happy, healthy life. Why should you be concerned about prostate cancer? My husband, Allan, and I weren’t either, until we received the devastating news from his doctor. Out of town at an antique music box convention, our future appeared uncertain as we clung to each other in shock. But our initial bewilderment and emotion faded as we counted our blessings. His cancer was diagnosed at an early stage. In our opinion, consistent healthy lifestyle choices had delayed this diagnosis more than 10 years.

fpcAllan has been very conscientious about getting regular screenings for prostate cancer, following a healthy diet and exercise program, taking selected supplementation, and not smoking. When he was in the Army, doctors had told him that he was at increased risk for prostate problems because of the surgeries he required then.

Allan explained the health issues that he was concerned about before we got married and added, “I can’t change heredity or past health problems, but I certainly have a choice about prevention steps to lower my odds for disease, avoid new problems, and improve the quality of my life. We have each other, and there’s so much that makes life worth living.” This optimistic attitude encourages me to continue following a healthy lifestyle also, as we work together to maintain and enhance our well-being.

Most men don’t have such advance warning.

“I think a common misconception is that prostate cancer has a low threat potential and that more men will die with the disease than of it,” says Dr. James M. Kozlowski, chief of urologic oncology at Northwestern University Medical School in Chicago.

“Although this is generically true, we know that prostate cancer is a leading cause of cancer death in men … it’s a common disease; it’s a pervasive disease. When detected in relatively young men who have a significant amount of their life span ahead of them, their chances of dying from it decrease dramatically,” he says.

The prostate is a walnut-sized male sex gland under the bladder whose secretions help form the seminal fluid. It surrounds the upper part of the urethra. The American Cancer Society estimates that 198,100 new cases of prostate cancer will be diagnosed and that 31,500 American men will die of this cancer in the year 2001. That’s one diagnosis every three minutes and one prostate cancer death every 13 minutes. The incidence of prostate cancer is higher among Black men, and may be linked to higher levels of the male hormone testosterone.

Get Regular Testing

Debate continues among experts about the benefits of the PSA (prostate-specific antigen) screening test. Some physicians have raised objections, believing it leads to needless biopsies and treatment of a very slow-growing cancer. But since 1991, when PSA testing became prevalent, prostate cancer death rates have dropped by 16 percent (while there’s been an increase in prostate cancers detected).

“Curative windows of opportunity that are lost are never retrieved,” says Dr. Kozlowski. “You may live a normal life span with the disease, but it may be one adversely impacted by disease-related complications that could have been avoided if optimal treatment were provided earlier on.” He agrees with the American Urological Association and the American Cancer Society’s policy that both a PSA blood test and the digital rectal examination (DRE) should be offered annually to men beginning at age 50, and to younger men who are at higher risk.

Your internist can provide these tests, and may refer you to a urologist. If you have a family history or think you may be at high risk, it’s probably best to see a urologist for testing. It’s best not to ejaculate 48 hours before the test, as it can raise PSA levels. Since a rectal exam can also raise PSA levels, have your blood drawn for the PSA test first. It’s also been suggested that it is best not to ride a bicycle beforehand.

Many urologists now do a “PSA profile.” This consists of utilizing both the traditional PSA test and the percent-free PSA, which measures the percentage of free PSA in the blood. Then a ratio of free to total PSA in the blood is considered.

Inform your doctor of your medical history, including all supplements and medications you take. Dr. Kozlowski says it’s wrong to assume anything over the counter is simple and safe, and if not helpful, at least neutral.

Some physicians are also concerned about the “fountain of youth” hormone supplements DHEA (dehydroepiandrosterone) and andro (androstenedione) and the possibility that they may increase risk for prostate cancer by raising testosterone levels. Dr. Kozlowski advises patients to discuss any over-the-counter dietary supplements or herbs they are utilizing or considering with their physician, rather than come to them later with many complications that could have been avoided had they been more open at the outset.

Men are not as conscientious as women about getting suggested routine health screenings. Eighty-five percent of women over 40 have had a mammogram (the recommended screening test for breast cancer), while only 30 percent of men over 50 have had a PSA test. Prostate cancer strikes as many men, and causes almost as many deaths annually, as breast cancer does women.

Dr. Kozlowski says wives should encourage their husbands to have routine screening for prostate cancer–especially if they haven’t seen a physician in a long time.

“I think it’s important to have other members of the family, perhaps at a younger age, nudged in the direction of surveillance, if there are a number of first- or second-degree relatives in that family who have been afflicted with the disease,” he says.

Richard Sutera, 51, of Centerville, Ohio, was diagnosed with prostate cancer at the age of 46. There’s no history of prostate cancer in his family, but he first sought testing at age 45 after experiencing lower back pain and noticing blood in his urine. Thinking he had a bladder infection, he saw his family physician (who did only a digital rectal exam the first time). He was treated with antibiotics for an enlarged prostate (benign prostatic hyperplasia–BPH or prostatitis), a noncancerous condition very common in men over 40.

After no improvement, further testing showed he had cancer. Because of his experience, he is a believer in early testing. “A high PSA doesn’t necessarily mean cancer, but I think men should get their PSA at 40 (definitely no later than 45),” Sutera says.

Keep Your Own Records

Ask for test results from your urologist, including any percentage figure. Chart these numbers next to the date of testing (or get a copy of the actual test report). Ask your doctor questions and seek additional testing if you (or your spouse) notice increases in your PSA level over time, notice some other trend, or have a concern. No one cares about your health more than you and those who love you.

Allan kept a detailed chart of the date of his test, the number of the PSA, and when he last ejaculated prior to testing. He noticed a change in the PSA figures if he ejaculated prior to the test, and was told not to by his physician only after asking him. He keeps an updated list of all medication and supplements, and brings a copy to his doctor(s).

Allan also charted changes in urinary function in response to dietary supplements. He noticed an improvement in urinary function and a lower PSA level after supplementing his diet with lycopene. Although the United States Pharmacopeia concluded last April that there is “moderate evidence of effectiveness” for saw palmetto in men with BPH, it didn’t seem to help Allan. A lack of effect could be because not all brands contain the same amount of active ingredients.

Can Prostate Cancer Be Prevented?

Since we don’t know exactly what causes prostate cancer, we don’t know what will prevent it. However, according to the American Cancer Society, existing scientific evidence suggests that about one third of the cancer deaths in the U.S. annually are caused by dietary factors. Cigarette smoking accounts for another third. Although genetics is a factor, heredity doesn’t explain all cancer occurrences. So for most Americans who don’t smoke, “dietary choices and physical activity become the most important modifiable determinants of cancer risk, at all stages of its development,” says the American Cancer Society.

Lynn Danford, M.S., C.D.E., L.D., a nutritionist who works with a urologist at Weiss Memorial Hospital in Chicago, believes a low-fat, plant-based diet can help men who have already undergone treatment, aiding in their recovery and slowing the growth of any other cancer cells. She adds that happiness and social interaction also enhance health, such as eating out, dining with friends, and celebrating with food. She says, “As an aspect of complete wellness, no person should ever be expected to forgo the enjoyment that comes from eating.”

“I Have Prostate Cancer! What Should I Do Next?”

1. Stay positive

Dr. Kozlowski says, “Once the diagnosis is made, it’s important that wives be a calming influence for their husbands and help them realize it’s not a death sentence. It doesn’t require an immediate decision. In general there’s plenty of time to learn more about the problem, seek a variety of opinions, and come to a decision based on what feels comfortable in terms of management strategy.”

Allan maintained his sense of humor and was touched by many people who offered their prayers. I’ve encouraged Allan to pray more, with little success. But noticing the sincerity of all those praying for him, he said to me one night, “There might be something to that praying.”

2. Do your homework–research treatment options.

We methodically went about researching treatment options, a consummate team effort. Quickly finding we weren’t alone, we uncovered many misconceptions and myths about prostate cancer. Allan says, “Most of the prostate literature doesn’t make it clear, and most of the men I talk to have no idea, that hormone therapy is actually castration–chemical or actual.”

Here’s some of what we found:

* Many factors determine treatment choice

No two men are the same; the best choice for your friend may not work for you. Some determining factors to consider before a treatment decision include age, other medical problems, and the stage and grading of the cancer.

The possibility of impotence and incontinence as a result of treatment weighs heavily on most men. Even New York Mayor Rudolph Giuliani (known as a decisive man) had a tough time making a treatment decision.

* Talk to others; attend support groups

Talking to others who have experienced prostate cancer (especially in a prostate support group setting) is an excellent way to get new information and firsthand accounts of various treatments. You can also learn what to avoid from others’ mistakes.

3. Get other opinions.

Obtaining second opinions is a common practice and expected of a responsible patient. A recent study concludes that specialists overwhelmingly recommend the therapy that they themselves deliver (JAMA, June 28, 2000). Our experience bears this out. We saw both oncologists and urologists, and only one physician seemed to be objective about several treatment options appropriate for Allan.

Also, don’t be pressured into an immediate decision. One physician strongly encouraged Allan to sign up for a clinical trial. After declining, we felt pressure to decide right then about his treatment choice. This was not the hospital or doctor of our final choice, though highly recommended. Joe from the support group was also disturbed by a similar experience.

Also, don’t feel you must stay loyal to your current doctor, even if he/she is your friend. Although very happy with Allan’s urologist, we still wanted the most qualified person (within our means) for our treatment choice.

We successfully found our way through the daunting labyrinth of issues and information, and after careful discussions came to a treatment decision together. For Allan, this was radical prostatectomy.

During Treatment

My support during treatment was very important to Allan, who was understandably anxious. I went with him to all preparatory appointments, where what to expect during and after his surgery and what I could do to help was explained.

During his operation I was informed at every stage what was happening and how it looked. After successful surgery I stayed with him at the hospital the first two nights.

After Treatment and Beyond

Patience and consistent effort make a huge difference in recovery. Allan notices significant improvement when he does the exercises recommended to speed recovery. All his functions since treatment have steadily improved. Follow doctor’s orders and don’t get discouraged; recovery takes time.

1. Keep a sense of humor.

After six weeks we were still able to travel to Mexico as we do every winter. Though it was more difficult than usual for him, the relaxing environment helped his continuing recovery. At one point when we parked an open Jeep we had a bag stolen containing Allan’s extra incontinence articles (still needed at that point). We laughed to think how surprised the thieves must have been to find this “treasure.”

2. Spouse support is important.

Humor also helps dispel anxiety and depression–a big factor for many men after treatment. Many men become concerned about intimacy issues and their ability to perform sexually. Also, loss of bladder control (usually temporary) can be humiliating.

Katherine J. says her experience shows that “a major illness can bring out the worst or the best in someone–facing potential mortality either increases one’s fears and insecurities, or it expands their gratitude and appreciation of life.”

Dr. G. Michael Durst, a psychologist who has counseled many men in both Chicago and South Africa, says, “After a major illness (especially one as personal as prostate cancer), many men tend to be more sensitive. The family of a man recovering from treatment (primarily the spouse), should be more understanding and patient; it’s a stressful, trying time for everyone.”

Dr. Durst recommends that “the spouse should not only listen to her husband’s words, but also attempt to hear the emotions that underlie what he is saying. She can stimulate the conversation by perception-checking, such as asking such questions as `Are you really saying …’ or `Are you concerned that …’ or `Are you feeling …?’ Such questions help him to open up and talk more about feelings of inadequacy or concerns around insecurity.”

3. Continue a healthy diet.

We believe a healthy lifestyle also helped with smoother surgery and faster-than-expected recovery. Joe from the support group changed his diet to include soy beverages, soy sausages and hot dogs, and lots of vegetables and fruit. He believes this has aided his recovery and is keeping his prostate cancer from returning.

4. Help others; share what you’ve learned.

Support other men by sharing your knowledge and experience. It may also help you gain more understanding of your own recovery, and diverse methods of coping and healing. We still find support groups helpful.

5. Keep updated.

“Our insights into the biology of prostate cancer and knowledge of what makes the tumor cell react aggressively has exploded,” says Dr. Kozlowski. “New cutting-edge approaches are imminent. Utilizing our understanding of the human genome is now beginning to translate into potentially effective treatment. There’s more incentive now, more research dollars, and it’s a much better publicized disease than before. This is a good era for prostate cancer.”

We have found that a healthy lifestyle, regular testing, thorough research, a sense of humor, and lots of love helped us successfully deal with Allan’s prostate cancer. If you’re a man age 40 or over or have a husband, brother, father, or friend over 40 or with history of prostate cancer in your family, take steps now to reduce your risk. Prostate cancer can truly test the intimacy and strength of a marriage. Working together for prevention–and treatment and recovery if necessary–can also bring a couple closer together.

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