The Man with a Hesitant Stream: UK Prostate Cancer Survival Rates in the Toilet

Government and Doctors Urge Patients to Become "Involved" with Cancer Care

by Jacqueline Strax

Oct 27, 2003. British survival rates for prostate cancer are in the toilet. By 1999, only 53 percent of men in England and Scotland and 48 percent in Wales were alive 5 years after diagnosis with prostate cancer compared with 83 percent in Austria, 75 percent in France and 76 percent in little Iceland (see chart). A Department of Health spokesman told a BBC reporter: "This is old data that does not represent the quality of cancer care in this country."

Let's just take the data for what they are -- results up to 1999. Reading this report, what's striking is this: even though prostate cancer stands out in the chart as one of the worst cancers for British men, the BBC reporter ignores it. Until the BBC (which mirrors establishment policy) changes its standard illustration for prostate cancer awareness -- the headless man in nightshirt (above) experiencing symptoms of nocturnal urinary frequency, hesitant stream or urinary obstruction -- UK men will remain at great risk of finding prostate cancer too late.

Talking the Talk ... while men get up at night to walk to the toilet

A cancer seminar in Scotland last summer run by European oncologists ended with government and doctors urging patients to get involved and "use their power." That's genuine progress for a nation with some of the highest cancer rates in Europe; but patients are already involved with cancer day and night. Through support groups and e-mail lists, patients already have created their own agendas.

Are informed patients heard? Or is this urging of patients onward a way of reining them in? After rising up in the 1990s, are UK prostate cancer activists now at risk of pacification by a healthcare establishment that resists telling men the truth about prostate cancer?

UK prostate cancer organizations, 19 of them in all, received advice lately from the charitable arm of GUS retail and business services group. The business people told the patient organizations to "clarify their main aims under five headings and to refine these aims until all parties agreed to a charter for action." Organizations were then given £100,000 to develop agreed aims through lobbying and media activity. The result was a Charter for Action calling for:

• Greater transparency in meeting government targets on prostate cancer;
• A national public awareness campaign about the prostate and its function;
• Better information and support for men with prostate cancer and those caring for them;
• More investment in specialist doctors and nurses and in prostate cancer research.

These instructions, this cash and this agenda materialized from the business sector six years after UK prostate cancer survivors started to raise their own voices. What are the results so far? Perhaps unfair to point to one project, but here it is -- an online game about a sperm's reliance on the "secret sex gland," with no mention of prostate cancer at all.

Prostate cancer patients used to have agendas of their own. How come patient organizations, under the guidance and cash incentives of the GUS foundation, now select as their first priority "Greater transparency" (whatever that means) "in meeting government targets on prostate cancer" -- when the UK government does not even grant the value of the PSA test? What's happened to determination to change and improve government targets?

The Royal Marsden, a leading UK hospital, in its booklet on prostate cancer asks (point four) What are the signs and symptoms? Under point five, "What happens when I go to the doctor?" men are told, "You will be asked to tell the story of your illness from the beginning." This implies few men will receive detection of prostate cancer unless symptoms are present and an "illness" is experienced. British men are not being told that by the time symptoms and illness manifest, prostate cancer is incurable.

Britain's Orchid Cancer Appeal says: "In 50% of cases, the disease will have spread before diagnosis. However, one in three cancers may be slow growing, and such patients can survive for more than 5 years without treatment." In their section on the PSA test (which they do feature quite prominently) they answer the question What happens if my PSA Test is high? with this misleading statement: "There are no hard and fast rules, and even the experts don't always agree on the best course of action. What happens next depends on whether or not you have any symptoms, your personal risk of cancer, and how high the PSA level is."

All of this is seriously misleading because as we all know, symptoms do not distinguish between BPH and prostate cancer -- and if a man has reached a symptomatic stage because of prostate cancer, his disease is not curable.

Cancerbacup is one of the biggest, most respected British cancer help organizations. They acknowledge that "Men with early prostate cancer are unlikely to have any symptoms as these only occur when the cancer is large enough to put pressure on the urethra." Nonetheless they devote an entire page to justifying " good reasons" for the UK policy of not routinely offering asymptomatic men the PSA test.

The Prostate Cancer Charity emphasizes that it is "important to catch the disease at the earliest possible stages as this may increase the number of treatment options available." But they assure men that "In contrast to some other types of cancer, cancer of the prostate can be treated fairly effectively even when it has spread."

Prostate Cancer Charity and seven other organizations used Prostate Cancer Awareness week 2003 to get across three main points:

• the prostate's function as "the secret sex gland"
• location of the prostate
• symptoms indicating that "something" might be wrong with the prostate

Not one word, as far as can be seen online, about the PSA test. Nor about dismal death rates under this policy of waiting for symptoms before looking for prostate cancer.

Prostate Cancer Charity created a little ShockWave game to teach young people about the prostate. This might make a cute addition to a sex education class. The game conveys no information, however, about prostate cancer. So what's the ultimate point? Where is the "clarification" and focus of aims those business people preached and paid for? This might work to sell contraceptives or Viagra but is it adequate for prostate cancer awareness? "With improved knowledge of the function and location of the prostate gland," The Prostate Cancer Charity says, "it will subsequently be easier to encourage men and their partners to be aware of the symptoms associated with prostate cancer."

Britain, get rid of that poor, worried guy brooding in the middle of the night as his stream hesitates over the toilet bowl. Tell men that by the time they notice urinary symptoms, if those symptoms are from prostate cancer, it's too late to treat the cancer with curative intent. Bring in true early detection for prostate cancer. Bring in universal access to digital rectal exam and PSA test for men over 40. Make sure all men know about "free" to total PSA test, "complexed" PSA test and calculation of PSA velocity.

Transparency in "meeting government targets" is worthless if those targets are inadequate. To raise prostate cancer patient survival rates for UK men on a par with breast cancer survival rates for UK women or survival for men with prostate cancer in Austria or France, tell men why they need to get tested for prostate cancer before symptoms appear.

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