A STRANGE PLACE

AN INFORMATION GUIDE
TO
PROSTATE CANCER

This is a link from the Introduction to a 5 part Information Guide. Index

 

HOW LONG HAVE I GOT? HOW WILL I DIE FROM PROSTATE CANCER?

 

The terrifying thing about the word "cancer" is its association with an inevitable and often painful death. Many men on hearing that they have prostate cancer assume that it is a matter of days or weeks until they die. They are wrong! Less than 5% of men diagnosed with prostate cancer will die from it within ten years of their diagnosis. The life expectancy of most men will not be changed by the diagnosis. They will live until they die of something else - most notably a heart attack. A recent study, using US statistics, indicated that in a 20 year period more than 87% of men diagnosed with prostate cancer would not die from the disease. Prostate cancer can, and does, kill thousands of men each year throughout the world. It should not be underestimated or treated lightly. But many more men survive the disease than succumb to it. It is important to know that.

 

Although the immediate focus, on hearing the word 'cancer' applied to us concerns the prospect of dying from the disease, the subject is something of an Elephant In The Room. It rarely comes up for discussion on Internet Lists or Forums and if it does is greeted with a hushed silence. There is very little published material - yet it is the main driver behind all decisions to do with the disease - "How long have I got?"

Many doctors avoid these issues, if they can, because they are difficult enquiries to answer. If they do respond, the question and answer that is remembered by the patient may not 'match' what the doctor said. Patients often qualify the question by asking "How long have I got? What is the worst case, doctor?" The doctor's answer may be along the lines that although some men with advanced prostate cancer may only live three to five years, most men, even men with aggressive disease, will live for many years; that the actual outcome depends on many factors; and so on. But what the questioner remembers is "Three to five years." And that is almost certainly the wrong message.

There are no definitive answers to these questions. There are too many variables: prostate cancer is not a simple 'one size fits all' disease. These variances result in significantly different diagnoses and outcomes. Some say that there are two varieties of the disease - the very aggressive 'tigers' and the not so worrisome kitty cats. But in fact there is a very large feline community in this Strange World, including kitty cats, feral cats, wild cats, lynx, bobcats, servals, caracals, cougars, jaguars, mountain lions, pumas, cheetahs, leopards, lions and tigers. They all represent different variants of the basic disease. The way in which the disease prowls, attacks and spreads can vary from man to man, depending on a wide number of factors, such as genetic background, diet, body mass, or exercise.

These are some of the issues that have a bearing on life expectancy after diagnosis:

The diagnosis. (Although the terms used will probably not be understood at this stage all are covered later in this booklet and are recorded here only for completeness.)

A "bad" diagnosis - the tiger of the family - carries a high, but not a 100%, chance of early rather than late death. It will generally be associated with a number of pointers. They are a combination of high Gleason Score of 8, 9 or 10; a history of continuously sharply rising PSA numbers; a low free PSA percentage (under 15%); a high PSA level, well over 20 ng/ml and probably in the hundreds; a staging of T3 or T4. Such a "bad" diagnosis carries a high, but not certain chance of early death.

At the other end of the range is the "good" diagnosis - the kitty cat - carrying a very low risk of death, but not a zero risk. typified by a Gleason Score of 6 - the lowest score for a diagnosis; a history of small or no continuous increments in PSA levels; a high free PSA percentage (over 25%); a PSA level below 10 ng/ml; a staging of T1. Such a diagnosis carries a very low risk of disease specific death, but not a zero risk.

These diagnostics are variable - for example there is a very dangerous form of the disease - you might liken it to a leopard - with a low PSA level that is often only diagnosed late in the day through DRE (Digital Rectal Examination) or the development of symptoms because the PSA levels generated never hit any of the levels that are defined as "abnormal" - this will be covered later in the book.

Age at diagnosis:

The latest available statistics show the median age at death for cancer of the prostate was 80 years of age. That is to say, half the men who died from prostate cancer were more than 80 years of age. The figures also show that over 90% of the men who died were over the age of 65. The same statistics show the median age at diagnosis for prostate cancer was 68 years of age with about 62% being men over the age of 65. Or to put it another way, although almost 40% of the men who were diagnosed were under the age of 65, only 10% of the men who died of the disease were under this age.

There is a view that any form of the disease diagnosed in a young man - usually regarded as a man in his late 40s to mid 50s - is more likely to be a 'tiger' and aggressive, but this is not supported by available data. What has been established from the limited data available is that a young man with a "good" diagnosis will have an even better survival rate than an older man, while if he has a "bad" diagnosis this is likely to progress more quickly than a similar diagnosis in an older man.

Risk of other causes of death:

Overall, despite the statements in publicity material, prostate cancer is not a major killer of men. In most Western countries, such deaths account for only about 3% of male deaths (which means that 97% of men die from some other cause) and, generally speaking, even men who have been diagnosed with prostate cancer still have a higher risk of dying from some cause other than this disease.

Two recent studies illustrate this point. The first, published in 2008 was a study of 19,271 men aged 66 years or older diagnosed with clinical stage T1-T2 prostate cancer (down towards the "good" or kitty cat end of the range). During the follow-up period - a little under 7 years - almost two thirds of the men died, but relatively few died from prostate cancer. Causes other than prostate cancer accounted for 11,045 (88%) of all deaths and far fewer - 1,560 (8% of the men in the study) were from prostate cancer.

The second study is an ongoing one on Active Surveillance (the term for decision not to have immediate treatment) and interim results were published in 2009. The median follow-up in this study of 453 men, was 7.2 years. In that time 77 (17%) of the men in the study died but only 5 (1%) died from prostate cancer. The ratio of non-prostate cancer to prostate cancer mortality was therefore 16:1. The men in this study had diagnoses similar to the "good" diagnosis set out above.

It is important to understand that much of the available information will refer to 'average' or 'median' life expectancy. Many people do not understand these terms which are used interchangeably, but which are in fact different. Stephan Jay Gould wrote an excellent piece titled "The Median Isn't The Message" - after he was diagnosed with a form of cancer (not prostate cancer) with a median life expectancy of only eight months, yet he lived for 20 years after his diagnosis. He explains:

 

Consider the standard example of stretching the truth with numbers - a case quite relevant to my story. Statistics recognizes different measures of an "average," "mean" or central tendency. This mean is our usual concept of an overall average - add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, "The mean income of our citizens is $15,000 per year." The leader of the opposition might retort, "But half our citizens make less than $10,000 per year." Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).

So, while none of the three factors discussed above can, in themselves, produce a firm answer to the question "How long have I got?", taken together they can help to give an indication of the range of potential survival time for an individual. He can assess where his diagnosis fits into the range; how old he is; what his general state of health is and what his work and leisure activities are. Hopefully in completing this exercise he will come to the conclusion that he has many years ahead of him; that he will realise that there is indeed life after Prostate Cancer and that he will understand that this is still primarily a disease of old men, at least as far as death is concerned. As Willet Whitmore, a prostate cancer specialist, said many years ago: "Growing old is invariably fatal while prostate cancer is only sometimes so".



HOW WILL I DIE?

Many people shy away from the second question - "How does death come?" because the word "cancer" is emotionally laden. It is usually associated with a drawn out, painful death and this is particularly so as far as prostate cancer is concerned, when metastasis (spread) to the bone can create significant pain, so let's deal with that first.
There is no doubt that bone metastasis can, and does happen to a minority of men and it is an awful fate for them and their loved ones. In the few discussions that have occurred on the Internet, experts in the field of prostate cancer have said that modern pain management techniques can deal with most of the issues and that, in any event, the dreaded painful bony metastasis is less common than imagined, at least in their experience.
A piece written by Dr Michael Glode (Professor of Medical Oncology M.D., Washington University), on his blog in October 2007 says in part:

 

"Prostate cancer tends to spread to lymph nodes or bones. There are some studies that begin to show us why this is different in different patients ……. but have yet to lead to more practical management decisions.

We treat all metastases first with androgen deprivation. In those patients with nodes, we …....keep the urethras open as they may be compressed by the enlarging nodes. Without these interventions, the kidneys can stop working and lead to death from accumulation of toxins normally excreted in the urine.

For those patients in whom bone metastases dominate, the main issue is often pain management. Radiation to bones that have tumor deposits can be extremely helpful along with appropriate pain medications. It is highly unusual to have a patient in whom pain cannot be well controlled with radiation, opiates, NSAIDs and attentive care."

A response to a discussion of this subject on the Internet said in part:

 

"I am a hospice social worker who was diagnosed with prostate cancer in 2005. So I have two perspectives on the disease, as a survivor and as individual who has provided counseling, emotional support, education and advocacy to patients dying from prostate cancer. The focus of hospice is to maximize a patient's quality of life while assisting him/her with the transition from this life. Prostate cancer patients generally enter a hospice program when they have six months or less to survive. The majority of PC patients who have died under my agency's care went peacefully with a minimal amount of physical pain and emotional stress."

There is a somewhat irrational fear that use of opiates to deal with pain will lead to addiction. Dame Cicely Saunders, regarded as the founder of the modern hospice movement, had a clear view of that. As a nurse, she knew that, as she said, "dying is hard work" and she transformed the way we look at death and dying, ridiculing some of the medical profession for not giving large doses of pain-killing drugs on the grounds that they might become addictive. If the patient were dying anyway, what did it matter? Nor did she believe that drug doses big enough to remove pain entirely would necessarily cause the patient to develop such a tolerance to the drug that it would become ineffective. Regrettably many medical institutions and doctors still hold outmoded views and too many people suffer unnecessarily if they are not aware of these issues and are led to believe that there can be no relief from their pain.

 

Dr Michael Glode's blog also refers to hospice care when he continues:

"The thing that leads to death in most patients, however, is not direct involvement of an organ like the liver, lungs or brain. Instead, most patients seem to have a "wasting syndrome" not unlike AIDS. Loss of appetite, loss of energy and general debilitation lead to weight loss and patients don't feel like getting out of bed. Hospice care can be extremely helpful for this stage of illness and is usually available either at home or in an inpatient facility."

The 'wasting syndrome' to which he refers can come from emotional issues like depression but is usually from Cachexia or Anorexia (not to be confused with the anorexia nervosa of young women). If caught early on, anorexia may be treated and weight loss reversed with nutritional supplements or increased consumption of food. In prostate cancer patients some molecular causes of cachexia are now known and work is being done to try to address these, but cachexia does not respond to nutritional supplementation or increased consumption of food.

One final point. People who reach this 'end of life' stage will often have fought against the disease for some time and they, and their doctors, may misjudge how long they have to live. One study showed that Doctors who referred terminally ill patients to hospice care were consistently incorrect. In only 20 percent of cases were their predictions accurate.

TWO VERY IMPORTANT THINGS TO REMEMBER ABOUT PROSTATE CANCER Because of the high survival rates and the relatively slow progress of the disease in most men: One: No one should give up hope as far as this disease is concerned. The journey to recovery or remission through diagnosis and treatment can be a long and hard one. It is made easier by the knowledge that there is a good chance of successfully completing it. Two: There is time for men and their families to educate themselves about the disease and then to work with their medical team to make the best choices they can.

 

GO NOW to Part 1 - Preparing ForThe Journey