YANA - YOU ARE NOT ALONE NOW
PROSTATE CANCER SUPPORT SITE

A STRANGE PLACE

AN INFORMATION GUIDE
TO
PROSTATE CANCER

This is part 3 of a 5 part Information Guide. Introduction: Index

 

BEYOND DIAGNOSIS - THE DESERT OF DOUBT

Having assembled all the data available about the diagnosis, the next step is to decide what treatment will be best suited to tackle it - if indeed treatment is required. This may sound unusual, but because, generally speaking, prostate cancer is slow growing, there are times when it makes sense to just keep a watchful eye out for any signs of disease progression. Of course no one should ever ignore a potentially dangerous disease, but immediate action may not be essential. At present most men have treatment. In the US about one third have surgery and one third have radiation. The others choose one of the less popular treatments or choose not to have immediate conventional treatment. About 30% of all men diagnosed fall into this last category.

When faced with the question, "WHICH TREATMENT IS THE ONE FOR ME?", the traveller through this Strange Place will discover the greatest conundrum of the disease. There is no agreement in the medical profession as to which treatment, or combination of treatments is best. An excerpt from a 1997 article in The Lancet, the prestigious British medical journal, summed up the position well. It said in part:


…. we have no firm guidelines for advising our patients about which therapeutic option is best. This means that education is more important than ever, but the art of multidisciplinary counselling is hampered by rivalries that seem more common among prostate cancer specialists than in other cancer specialties. This must change…. Close collaboration between surgeons, radiotherapists, and medical oncologists is mandatory for substantially improved control of prostate cancer.'


There is no sign of any great change since that was written. Most urologists are surgeons, and they will usually recommend surgery, whilst for the same diagnosis radiologists may recommend radiation therapy. Both will quote statistics to support their position if asked to do so. Can both be right? This argument, it appears, will not be settled for many years. Until it is settled, the newcomer to this Strange Place has to make up his mind what is best for him as best he can. Hopefully what follows will help him find his way through this Desert of Doubt.

TREATMENT OPTIONS

The options in South Africa are more limited than in some overseas countries - particularly the United States of America where, it is said, there are more than fifteen options. The main options available in South Africa are:

· Surgery - This is the most common procedure, usually known as RP (Radical Prostatectomy). In cases of advanced prostate cancer the testicles may be removed in an operation referred to as an Orchiectomy or an Orchidectomy, although this is really a form of hormone treatment, since it results in testosterone deprivation.

· Radiation Therapy - Commonly referred to as EBRT (External Beam Radiation Therapy). There is another form of radiation therapy known as Brachytherapy or SI (Seed Implants). This treatment was introduced into the country fairly recently and South Africans are now able to choose between EBRT and SI.

· Hormone Treatment - There are many variations on this type of treatment, but essentially all involve using medication to suppress the hormonal mechanisms that allow tumours to grow. Orchiectomy, surgical removal of the testicles, is an irreversible form of hormone treatment.

· Cryotherapy - In this form of therapy the prostate gland is frozen. The treatment is evolving in terms of the technology used, and is still regarded in some quarters in the US as somewhat experimental. It is new in South Africa.

· Conservative Management - This is often referred to as "Watchful Waiting". No conventional treatment is undertaken unless regular monitoring indicates disease progression, but changes are made to diet and lifestyle with the intention of boosting the immune system.

· Chemotherapy - This form of treatment has not been used very much in dealing with prostate cancer except as a last resort if all else fails. New chemicals and protocols developed in the USA seem to be proving more effective but may not be available yet in South Africa.

Important information regarding Treatment Choice


1. Be certain that immediate treatment is required. The substantial majority of treatment procedures carried out for prostate cancer in the US are said by leading experts to be unnecessary. As many as 70% of procedures fell into this category, according to a recent estimate.

2. The choice of treatment may be less important than the choice of who does the procedure. The non-medical people in the prostate cancer community generally agree that the experience of the person or team carrying out the chosen procedure is of the utmost importance. The more experience, the less severe the side effects. This may seem obvious, but it is something that many men only find out the hard way. It may be somewhat embarrassing to ask a surgeon or radiologist to provide evidence of their skill, but bearing in mind the consequences, this should never be avoided.

3. It is important to be as certain as possible that the disease is contained within the prostate capsule before making any final treatment decision. This is where the Partin Tables and other similar algorithms are very useful. The information obtained by using the Partin Tables is no guarantee of the actual situation for any individual. It does however provide some indication of what treatment options might achieve the best result, and which might be ruled out because of the possible extent of disease.


There is need at this point for a short diversion to consider the tables before we get back to the discussion of treatment choices.

Diversion to consider the Partin Tables:

Dr Partin and his team at one of the major US medical centres analysed the results of many biopsies. Their aim was to try and establish if there was any relationship between the various aspects of diagnosis and the likelihood of the disease having moved beyond the capsule. The tables are too complex to reproduce in this document, but essentially they look at the three main aspects of diagnosis - PSA (Prostate Specific Antigen), Gleason Score, and Staging - and show, as a percentage, the statistical likelihood of the disease having escaped the capsule or being contained.

To take the example referred to above, where the man was diagnosed as PSA 7.2: GS 3+2=5: Stage T2bNXM0, and referring to the relevant section of the Partin Tables we would find that the chances of:


o Organ-Confined Disease are Between 38% and 49% (median 43%)
o Established Capsular Penetration are Between 45% and 55% (median 50%)
o Seminal Vesicle Involvement are Between 3% and 8% (median 5%)
o Lymph Node Involvement are Between 1% and 3%(median 2%)


To give some idea of how one item might change these percentages, and how important the Gleason Score is, if the diagnosis was PSA 7.2: GS 4+4=8: Stage T2bNXM0, then the chances above would change to these:


o Organ-Confined Disease Between 9% and 19% (median 14%)
o Established Capsular Penetration Between 39% and 53% (median 46%)
o Seminal Vesicle Involvement Between 17% and 31% (median 24%)
o Lymph Node Involvement Between 11% and 24%(median 16%)


The greater the chance of the disease having escaped from the organ, the less the likely benefit from surgery or other local treatments.

Now, back to treatment choices:

Surgery: This form of treatment commonly known as RP (Radical Prostatectomy) is often referred to as the "gold standard" treatment, implying it is the very best. It is the treatment most commonly prescribed for younger men or early stage prostate cancer. The percentage of men electing to have surgery in the US has been dropping over the past ten years.

In this form of treatment, the prostate gland is reached either from the lower part of the front of the body - this is a retropubic procedure - or through the area between the anus and the scrotum - this is a perineal procedure. There are no studies that show either of these procedures to be superior to the other. In the past the operation involved a substantial loss of blood. There have been significant improvements in surgical techniques and it is now unusual for a transfusion to be required. Some surgeons recommend the drawing and storing of the patient's own blood ahead of the operation as a precautionary measure.

RP is a major surgical procedure and will usually take 3 - 4 hours. Discharge from hospital will normally be within 5 to 7 days. A catheter will be in place, usually for several weeks. It normally takes about 3 months to regain control of the bladder function. Recovery of erectile function will almost certainly take a good deal longer, many months and sometimes a year or more. Recovery of erectile function is dependent to a large extent on whether the surgeon is able to spare one or both of the erectile nerves, although this is not the only factor.

The main attraction of surgery is that it introduces an element of certainty. The prostate gland can be examined closely to check on the extent of the tumour and to verify the Gleason Score. There will be more clarity as to the likelihood of the tumour being contained within the gland. If there has been no spread beyond the gland, then the removal of the prostate will, by definition, remove the tumour. For many men that is of utmost importance.

However, surgery is not a good choice if the disease has metastasised - that is if the disease has spread to distant sites beyond the prostate. There is a view that, in such cases, the removal of the gland and the main tumour may accelerate the growth of the secondary, metastasised, tumours and make control of the disease much more difficult. Like many other aspects of prostate cancer, there is no consensus on this issue, which is the subject of some debate among physicians and researchers. Because it is so difficult to establish beyond doubt whether the disease has spread beyond the gland, there may be an element of risk in opting for surgery.

Success or "cure" is measured by taking PSA tests at intervals after the surgery. There should be no detectable PSA measurement. No formal studies have demonstrated the superiority of surgery over other forms of therapy, including Conservative Management, in early stage cancer. There is a failure rate of about 30% - 35% over a period of 10 - 15 years for men undergoing surgery. Some failures have been reported at 20 years. In the event of recurrence or failure of the treatment, it is possible to use EBRT (External Beam Radiation Therapy) to treat recurrence thought to be confined to the prostate bed, or to use HT (Hormone Therapy) as a secondary treatment for recurrence where the disease has spread into other areas of the body.

The main side effects of surgery are erectile dysfunction (the difficulty or inability to have an erection) and bladder incontinence (the inability to control the bladder). The first of these problems - erectile dysfunction - comes about because the nerves controlling erections are embedded near the surface of the prostate gland; one on each side of it. There has been a reduction in the reported rates of erectile dysfunction following the development of what is referred to as the "nerve sparing" technique, but the rate is still high for men over the age of 50. Bear in mind also the position of the tumour may affect the ability of even the best surgeon to spare one or both of the nerves while removing all the cancer. Total bladder incontinence is reported in a small number of men but many men experience some leakage, particularly during sexual arousal or when lifting, coughing, sneezing or laughing.

Another issue to be aware of is stricture from scar tissue, which can also cause urinary problems. If the man has a history of poor scarring (some reports suggest that if any scar on his body is more than 10 mm wide) then there is about an eightfold increase in urinary problems following RP (Radical Prostatectomy).

Penile shrinkage is also reported in a significant number of men, thought to be the result of maintaining the penis in the flaccid state during what can be many months of recover of erectile function. This can be counteracted by stimulating erections using drugs or manual devices as soon as possible after post-surgical healing has taken place.

Radiation Therapy is commonly referred to as EBRT (External Beam Radiation Therapy), although there are many other acronyms, such as RT (Radiation Therapy), 3DRT or Conformal RT. All refer to the procedure where radiation is directed at the site of the prostate gland from an external source. 3DRT and Conformal RT refer to the technique of directing the beam at the prostate gland from different angles to achieve better results. This requires sophisticated equipment, which is available at leading treatment centres.

Another form of radiotherapy, which has only come to South Africa fairly recently, is what is known as Brachytherapy or SI (Seed Implants). This involves the placement of radioactive "seeds" directly into the prostate gland, where they remain. There is a variation of this treatment known as HDR (High Dose Rate Brachytherapy) where seeds are inserted and then removed. This is not available yet in South Africa. Both EBRT and SI are intended to destroy the cancer cells while leaving healthy cells intact.

EBRT is often the recommendation for older men for whom surgery presents a health risk or where there is some doubt that the tumour is still contained within the prostate gland. It is also often used as a "salvage" treatment for failed surgery or in conjunction with other treatments such as surgery or SI. In such cases it is known as adjuvant treatment. Radiation treatment is not recommended for men who have urinary problems prior to treatment since the procedure will often exacerbate these problems.

Treatment takes place over a number of weeks - usually six or seven - with daily sessions of therapy. This is because the effect of the radiation is cumulative, so low doses given on a regular basis build up into high doses, lethal to the tumour cells. Initially, most men tolerate the procedure very well, and will often have their "daily dose" on the way to work. As time goes by, there is a tendency to feel fatigued and it may be desirable to rest in the afternoon. The feeling of fatigue will usually disappear after completion of the treatment.

SI is usually considered as an alternative to surgery for men with a suitable diagnosis. It is a relatively short procedure, taking two or three hours after which the man can go home and carry on with his normal activities. As time goes by there is sometimes a feeling of fatigue, as is the case with EBRT, but this usually recedes with time, as the dosage from the seeds reduces (they are only fully active for about six months). SI is not a good option for a man who has previously had a TURP (Transurethral Resection of the Prostate).

Two aspects of SI could cause some concern. Firstly, the man is carrying radioactive seeds in his prostate and the question asked is whether those seeds can injure anyone close to the man - for example, grandchildren sitting on his lap. Studies have demonstrated this is not a risk. The second point concerns seeds migrating from the prostate to other parts of the body, notably the lungs. This happens when seeds work their way out of the prostate before the glandular tissue heals and locks them in place, or where they have not been securely placed. It is said this does not present any significant problem for the patient.

Success or "cure" is measured by a gradual reduction in PSA level in the months after treatment is completed. The aim is to achieve a nadir, or low point, of 0.200 ng/ml and to maintain that level. Some authorities feel a nadir of under 1.00 ng/ml is an acceptable level. Some men experience what is referred to as a "bump" about 18 months after SI when the PSA rises and then falls again. No formal studies have demonstrated the superiority of radiation therapy over other forms of therapy, including Conservative Management, in early stage cancer. There is a failure rate of about 30% - 35% over a period of 10 - 15 years for men undergoing radiation therapy. A leading US institution claims better long term freedom from disease using combined SI/EBRT therapy at than EBRT alone.

In the event of recurrence or failure of radiation treatment, surgery is not an option because of the damage done to the tissue by the procedure. The usual option for further management is HT (Hormone Therapy).

The side effects of radiation therapy are similar to surgery with the added complication of urinary urgency and frequency and difficulty in starting a urine stream. EBRT can sometimes result in bowel incontinence as well as urinary difficulties. ("Incontinence" is the inability to control bladder and bowel). The reported incidence of bowel incontinence is fairly low for EBRT and even lower for SI. There is a reported improvement in radiation treatment side effects with modern techniques, especially 3DRT. Erectile dysfunction is reported to occur in a substantial number of cases, more so for EBRT than SI (Seed Implants), but at about the same level as surgery. In contrast to surgery, where an immediate loss of function that can be followed by a gradual recovery, erectile dysfunction following radiation therapy of any kind tends to occur well after treatment and to gradually grow worse over time.

Hormone Treatment. There are many variations of this treatment, all with different acronyms. They all fall under the general term of ADT (Androgen Deprivation Therapy). The theory behind this treatment is that growth of prostate cancer cells is fuelled by testosterone, the male hormone steroid, which is an androgen. A reduction in the production of androgen will therefore deprive these cells of nutrition and they will die. There are four methods by which the cells are deprived of androgen. They are sometimes used in unison, in which case the treatment is referred to as CHT (Combined Hormone Therapy).


· Ablation. The testes produce approximately 90% of the male body's testosterone with the balance being produced by the adrenal glands. Thus a simple way to reduce testosterone production is the surgical removal of the testes by way of an orchiectomy or orchidectomy (castration).

· Additive. Testosterone production is attacked by dosing the man with oestrogen.

· Inhibitive. This involves the use of chemicals to block signals from the brain to the production centres so that no testosterone is produced.

· Competitive. The final method of treatment involves what are known as antiandrogens. These do not prevent the production of testosterone, but block the receptors on the prostate gland, preventing the androgen from being absorbed.


HT/ADT is usually used for late stage prostate cancer, where the tumour has spread beyond the capsule and cannot therefore be treated by surgery or radiation. It is also used as a "salvage" therapy for failed surgery or radiation treatment. Treatment is administered in a variety of forms, from pills to monthly or quarterly injections.

There is what seems to be a growing use of this therapy as a precursor to other treatments. This is known as neo-adjuvant hormone therapy. Many practitioners are opposed to this practice because studies do not show any significant advantage for the inevitable side effects and there are several disadvantages. Leading practitioners in the US of both surgery and brachytherapy will not treat men who have had neo-adjuvant hormone therapy.

The aim of HT/ADT is to manage and control the disease, since this therapy cannot result in a permanent "cure". The degree of success achieved is measured by the reduction of the PSA to as low a level as possible and keeping it there. In many cases the PSA level can be undetectable and there are reports of men treated with this therapy achieving mortality rates very similar to those of men without the disease. Failure of this treatment occurs when the tumour becomes androgen independent (AI). This condition is often referred to as AIPC - Androgen-Independent Prostate Cancer, or Hormone Refractory Prostate Cancer (HRPC). This means the tumour has found a way of growing without the androgen associated with testosterone. Management of the disease at such a stage is very difficult although some success has been reported with new chemotherapy drugs, some of which may not be available in South Africa.

There are numerous side effects associated with this form of treatment, some of which are listed at the back of this booklet. The ones which occur in most men with any of the HT/ADT methods are erectile dysfunction, loss of libido (no interest in sexual activity), hot flushes, osteoporosis (loss of bone), loss of muscle tone, weight gain and mood swings, with depression being widely reported.

Individual methods have other side effects such as the development of breasts, increased risk of thrombosis, and an initial rise in tumour activity, known as a "flare". This is usually of a temporary nature. Flare can be prevented by administering an anti-androgen one week prior to the first injection of the drug being used to inhibit testosterone production.

A recent development has been towards "pulse" therapy known as IHT (Intermittent Hormone Treatment) or IHB (Intermittent Hormone Blockade). Some studies indicate stopping the ADT once the PSA count has been reduced and reintroducing the therapy if the PSA count rises again might produce some benefit. The duration of the side effects of HT/ADT are reduced and it appears the possibility of the disease becoming androgen-independent may also be lessened.

Conservative Management. This option is commonly referred to as WW (Watchful Waiting) although the terms have different meanings. Watchful Waiting means no treatment is undertaken unless the disease is seen to progress. On the other hand, men choosing the Conservative Management option use a variety of non-conventional or alternative treatments to manage the progression of the disease.

The rationale for either of these approaches takes into account prostate cancer is what is termed an "indolent" disease in most cases, because it progresses so slowly it may never be a threat to life. The man choosing Conservative Management over Watchful Waiting believes by taking a proactive stance he can harness his immune system to either halt the progress of the disease or possibly even cause it to regress.

Prime candidates for this option are those who have been diagnosed with an insignificant tumour. There are various definitions of this term, but broadly speaking they are similar to the one established by Johns Hopkins University School of Medicine in the US, where the definition of an insignificant tumour is one which has the following characteristics:


· Nonpalpable - the examining doctor would not feel anything when carrying out the DRE (Digital Rectal Examination)


· Stage T1c - the tumour is discovered in the course of a biopsy following an elevated PSA test where there are no other symptoms


· Free PSA - the percentage of free PSA should be 15% or greater


· Gleason Score - less than 3+4=7


· Size - less than three needle cores positive with none greater than 50% tumour. (In this definition it is assumed that a 12 needle biopsy is used, not the more usual 6 needle biopsy.)


Studies have shown the majority of men with such a diagnosis will not have a life-threatening progression of the disease for many years. Most studies do not extend beyond 15 years. One study estimates up to 94% of men with tumours with a Gleason Grade of 5 will not die from prostate cancer within 15 years of diagnosis depending on their age at diagnosis. Where the Gleason Grade is 6 the disease specific survival rate is estimated at up to 82%. These disease specific survival rates are statistically not much different from the rates for men who have had conventional treatment.

The choice of Conservative Management may seem to be an obvious one for men with the appropriate diagnosis, and indeed a growing number of men are choosing this option. About 30% of men in the US are opting for Watchful Waiting according to the latest reports. However, the problem for any man considering this option is the uncertainty of the diagnostic process, which is more art than science. It is simply not possible to identify, with absolute certainty, which tumours are indolent and which are aggressive, although there are good indicators. Anyone embarking on Conservative Management will need determination to continue. The medical profession, often ill-informed on nutritional matters, along with well-meaning friends and relatives often create a good deal of pressure to 'do something' from.

The essence of Conservative Management is a belief in the mind/body continuum. The aim is to maintain the immune system in good condition to deal with the tumour. Since there are very few studies to guide men in this endeavour there is a tendency for each man to develop his own unique program. Most of the programs for which there is anecdotal support include the following elements:


· Stress Reduction: Stress is commonly regarded as one of the most universal causes of damage to the immune system. Stress reduction can be accomplished using activities such as meditation, visualisation or yoga.


· Exercise: Moderate amounts of exercise are essential. Usually, subject to the fitness of the man, he is recommended to exercise at least three days a week at a level where the pulse rate is raised and sweat is formed.


· Changes in diet: This subject is covered in a little more depth in the section titled Plains of Recovery, but essentially, the aim is to attain a vegetarian diet or better still a vegan diet. Red meat and dairy products are regarded as bad: fresh vegetables and fruit are regarded as good. Smoking should, of course, be stopped, as should consumption of alcohol, although small quantities of wine, especially red wine are thought to be beneficial. Consumption of coffee, animal fats, fried foods and sugar should be kept to a minimum.


· Weight Loss: There is a clear connection between illness and obesity. Although following the steps above should lead to weight loss, this should also be incorporated as one of the aims of any successful program.


Successful Conservative Management treatment should see a stabilising or a reduction in PSA levels, and this is the primary measure of success. Because of the vagaries of PSA counts, this should not however be the only measure. There should also be an annual DRE (Digital Rectal Examination) and, some recommend, an annual biopsy. In considering this latter test, some thought should always be given to the potential for side effects from biopsy. A continuous rise in PSA or a positive DRE would be the trigger to contemplate further, conventional treatment.

The side effects of a successful Conservative Management program are all positive since the enhanced immune system will generally result in better health all around. It is often difficult to deal with the uncertainty associated with Conservative Management. This is often greater than the uncertainty of those who have had conventional treatment, especially because support for this option is usually virtually non-existent. The failure of a Conservative Management program may mean the tumour has advanced to an extent where neither surgery nor radiation treatments are options. The man would then have to consider Hormone Treatment as a palliative measure to control the disease.

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