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YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE


STRANGE PLACE LINKS: PREPARING FOR THE JOURNEY : GETTING STARTED - THE FOREST OF FEAR : GETTING STARTED - THE PROCESS

STAGING AND DIAGNOSIS : BEYOND DIAGNOSIS - THE DESERT OF DOUBT : BEYOND TREATMENT - THE PLAINS OF RECOVERY : REMISSION

YANA LINKS: SURVIVOR STORIES : DISCUSSION FORUM : RESOURCES

 

A STRANGE PLACE

AN INFORMATION GUIDE
TO
PROSTATE CANCER

This is part 4 of a 5 part Information Guide. Introduction: Index

BEYOND TREATMENT - THE PLAINS OF RECOVERY

For many men, particularly those who have not had enough input from their medical advisors, the promise of a 'cure' is misleading. They think the surgery or radiation will have dealt with the disease, they will be cured and they will be able to get on with their life as it was before the start of this journey to a Strange Place. But this simply isn't so. As all travellers know, life is never quite the same when you have been exposed to experiences beyond your previous knowledge. Prostate cancer is no different and, in addition, there is usually a good deal to be done in the aftermath of a treatment choice.

One thing common to all treatment choices, including Active Surveillance, is the need for continual monitoring of PSA levels to ensure there is no progression of the disease. Some men who have had Surgery are somewhat surprised to find this is a requirement, despite having been assured the removal of the gland will cure the disease. But all treatments have recurrence rates so lifelong monitoring is therefore essential. PSA tests will usually start three months after treatment is completed and will follow at similar intervals for the first twelve months. Thereafter they will usually go to half yearly and finally annual tests. Significant rises in PSA levels will trigger further investigations and, in some cases, additional secondary treatment. As discussed in the section on Active Surveillance, for men opting for this choice other tests, including but not limited to biopsy procedures and DRE (Digital Rectal Examinations) will likely be carried out periodically to monitor significant changes. These examinations will also be used, where appropriate, in the event of treatment failure to try to judge the extent of the progress after treatment.

Although much of the focus at this stage of the journey is on morbidity or side effects, which vary depending on treatment chosen, perhaps it is a good idea to contemplate those factors all men should be taking into account, irrespective of their treatment choice. The journey from Treatment to Remission is a long one and it is as well to ensure that there are sufficient mental and physical resources to keep travelling this road. So the first step on the long trek across the Plains of Recovery is to optimise wellness and the immune system, which is going to have a good deal of work, particularly in the early stages. For those choosing conventional treatment, scar tissue has to be formed, infections fought off, toxic substances removed, damaged tissue replaced. For those choosing Active Surveillance, the tumour itself has to be dealt with.

Changes in Lifestyle

Most people will have to consider substantial modifications to their lifestyles to achieve this optimal state of wellness and to avoid further illness. These are some of the suggested steps:

Avoid Exposure to Damaging Substances: Smoking has been demonstrated to cause immense damage to the immune system and has been linked to virtually every fatal illness. No one should continue smoking, least of all those diagnosed with a potentially terminal illness. Alcohol is also a poisonous substance and creates a great deal of additional work for the immune system. Some studies show a moderate amount of wine, particularly red wine, may have some beneficial effects. No studies demonstrate any value in drinking spirits. Coffee is another drink with a large question mark over it. Although evidence of damage is not as clear as for alcohol, coffee drinking should be kept to a minimum.

Reducing Stress: Many studies show the linkage between stress and illness. Despite this, there has been a general denial that reducing stress can reverse the progress of an illness. This is beginning to change. More and more of the major medical institutions in the US are beginning to take this issue more seriously and are starting to study the effect of stress reduction on recovery rates following diagnoses of life-threatening illness. There are many ways this important facet of recovery can be initiated. These methods may be as drastic as considering a change in workload by changing jobs to being as simple as learning breathing and relaxation techniques. Whatever the choice, the benefits of stress reduction will become obvious.

Positive Attitudes: Studies show those who have a determination to reach and achieve remission are more likely to attain their goal than those who have a negative view of their prospects. Although many consider only the negative aspect of the term "self-fulfilling prophecies", these are just as likely to occur with positive beliefs. Joining support groups, either in real time or in cyberspace on the Internet, can help in developing this positive attitude because there are so many affirmative role models; so many who are further down the path; so many who have achieved Remission. Visualisation and affirmation are two useful tools to gain and use in the process of making positive attitudes work.

Diet and Supplements: This is an area where confusion reigns supreme, with views and counter-views being expressed vociferously. Claims of snake oil salesmen compete with those supported by well-designed studies. If it is possible a qualified nutritionist/dietician who specializes in oncology issues should be consulted. Everyone ultimately has to make their own decision, as with many other aspects of prostate cancer, but there is a degree of consensus on some of the issues such as:

o Meat, dairy products, fat, sugar, fried foods: All should be avoided or reduced to a bare minimum. Red meat in particular is considered as a negative food. Most fish are a good substitute for meat products, although some farmed fish may have been given unhealthy feed and pharmaceutical products to get them to market quicker - as indeed is often the case with chicken. Because we eat so much sugar in the Western world it is often difficult to give up sugar and the temptation is to substitute sugar with artificial sweeteners, some of which have severe health issues attached to them and therefore, they should also be avoided. Aspartame has been identified as being particularly dangerous.

o Refined products: The more foodstuffs are processed before reaching the table, the more the natural values are damaged or destroyed. The closer that food is to its natural state, the better. So many 'fast foods', many of which are fried, have very little value.

o Fresh fruit and vegetables: Regular and substantial helpings of fruit and vegetables are essential for good health. Canned fruit often has sugar or additives; stored fruit loses some of its value, so fresh fruit in season is a better bet. Fruit juices often have added sugar, but in any event are too concentrated and even if unsweetened will deliver a massive dose of natural sugar. Vegetables in salad form are ideal, but otherwise, to extract the most value, they should be lightly steamed and not overcooked. Cruciferous vegetables such as broccoli, cabbage and Brussels sprouts are particularly valuable in the fight against prostate cancer (so your parents were quite right to tell you to eat them all up!!).

o Vitamins and other supplements: Those opposed to taking supplements make the good point that people eating a well-balanced diet should not need anything more. The problem with this argument is two-fold. Firstly, with modern methods of growing, storing and distributing food, much of the natural value of food is lost. Secondly, the area or conditions in which the food grows may be poor. For example, selenium has been shown to be beneficial in the prevention of prostate cancer and it may also have some curative effect. Foodstuffs grown in selenium-rich areas of the country will supply sufficient selenium for these purposes, but if grown hydroponically, for example, they will not. For most men eating a healthy diet, a general, good quality multi-vitamin will be the main supplement, with the use of garlic, Vitamins D, C and E in support. This regimen should prove a sound basis to proceed from. Although excess quantities of Vitamin C are excreted, it is possible to overdose with Vitamin D and E so recommended doses should not be exceeded.

Exercise: Appropriate amounts of suitable exercise are essential for wellness. Exercise induces a feeling of well-being through the release of endorphins, improves circulation of essential elements throughout the body and assists in the removal of waste through the lymph system. Just how much exercise is acceptable depends on the individual and any other health issues, but as a general rule it is considered raising the pulse rate and a sweat three times a week is a good minimum to aim for. Walking in the fresh air at a brisk pace is a good way to start an exercise program.

Body Mass Index: Obesity is linked to many illnesses and every effort should be made to achieve the lean body mass considered correct for age and height. Following a good diet and exercise program should result in a gradual and healthy reduction of body fat and mass.

As has been said, these are general guidelines for the journey through the Plains of Recovery. One area here - The Swamp of Depression - traps a substantial number of men and their partners to a greater or lesser degree, following diagnosis. A leading medical oncologist in the US has said that depression is the single biggest hurdle faced by most of the men he sees. Yet it is something rarely discussed, seemingly because of a complete misunderstanding of the nature of depression and mental health.

Most men seem to regard an inability to cope with mental stress as a shameful weakness. They feel that they should be able to 'snap out of it' - advice which is often given by those who should be providing support. People suffering from depression would like nothing more than to be able to do just this, but they can no more 'snap out of it' than a drowning person can save themselves by heeding the advice to 'start swimming' if they don't know how to swim. Anyone suffering from depression should seek professional help. This debilitating condition can be overcome - sometimes in a remarkably short time - with help.

All treatment choices have side effects

All of the conventional treatments will have side effects. The range and type of morbidity associated with these treatments is wide as is the individual experience of each man. Some have comparatively minor problems they can 'live with' others have severe and often painful conditions that are difficult to treat. Some side effects are of short duration; others are not.

Unfortunately it is not possible to establish the degree of morbidity any individual will experience with any degree of accuracy. There is little doubt that the experience of the medical people carrying out the procedure is the greatest predictive factor in the degree of side effects experienced after treatment. Quite simply stated, men have less severe side effects when treated by an experienced practitioner or medical team. This may seem obvious, but the embarrassment of seeking evidence of expertise has led to severe consequences for many men. This awkwardness must be overcome for the best outcome.

There is a summary of the potential side effects of ADT (Androgen Deprivation Therapy) in the relevant section of this booklet. As is the case with side effects from other treatments, the number of men who experience these side effects and the severity of the morbidity is widely variable. Many men have reported having no significant problems with ADT, while for others it is barely tolerable.

Erectile Dysfunction:
This is the morbidity or side effect upon which the majority of men focus and it occurs in the majority of men who have treatment for prostate cancer. Although some studies show a high rate of recovery of erectile function for men who have had surgery, it is important to establish the definition of recovery, which may not even refer to the ability to achieve regular sexual penetration.

The ability to achieve or maintain an erection is, for most men, an important part of their life and their view of manhood. Loss of this ability can be devastating and, for some men, literally make life not worth living. It is probably the greatest source of the depression already discussed. In many cases it also creates an enormous amount of stress for the partners of men in this position, with both parties mourning the loss of the physical aspect of their relationship.

There is no doubt this is a serious issue, but it is also important not to make it the sole focus of life after treatment, or to link it specifically to the treatment itself. The majority of men will suffer some form of erectile dysfunction as they age, a fact often overlooked by men with problems after treatment. Erectile problems should therefore be considered in this broader view.

Although most men will have some erectile issues to deal with after treatment, a leading institution in the USA recently published the preliminary findings of a study which suggested that early treatment, starting even before the surgery, might protect erectile tissue and might facilitate the chances of erectile function recovery. It is suggested that the following course of action may minimise atrophy and optimise recovery - this protocol should only be followed after consultation with qualified medical advisors:

Take Viagra 25mg (a quarter of a pill) before bedtime, nightly. Start this treatment 2 weeks prior to the surgery. You should not expect any erection to occur at such a low dose.

Discontinue Viagra 25mg the night before surgery and during your hospital stay.

Resume Viagra 25mg nightly, after you are discharged home even with the catheter in place. " After catheter removal (usually at 7-14 days after surgery), consult your surgeon whether it is safe to attempt to get an erection.

After this time (usually 2-3 weeks after surgery), switch to Viagra 25mg 6 nights per week and Viagra 100mg once per week. The Viagra 100mg dose should be taken in an effort to get an erection. Take the pill on an empty stomach (it is suggested 2 hours before your evening meal). The pill lasts at least 8 hours so you will have plenty of time to attempt stimulation.

It is suggested that you should make 3-4 attempts at Viagra 100mg after surgery before you see your doctor again - usually about 6 weeks after surgery to discuss how you responded to the Viagra 100mgs dose.

Many will recover some or all their erectile function without the programme outlined above with the help of the numerous mechanical and chemical aids that are available, the most common of which are mentioned below :

o Viagra, Cialis, Levitra: These pills have without a doubt been hailed as the greatest aid for men with erectile problems. Some failures are reported and some men cannot tolerate the side effects from the drug, but by and large most reports are positive.

o Injections: Most men shy away from the thought of injecting themselves with a drug in this sensitive area, but many men report an excellent result from penile injections said to be a comparatively simple skill to acquire. Proprietary preparations are available, with variable results reported.

o VED (Vacuum Erectile Device): There is a variety of these devices on the market. All work on the same principle: they create a flow of blood to the penis, creating an erection and then mechanically maintain the erection, which many reports say are adequate for intercourse.

o Penile Implant: Reports on the success of this procedure are very mixed. For most men, this is a last resort.

Although the focus is generally on the utmost importance of gaining an erection, which in itself can be self-defeating because of the anxiety created, many men are seemingly unaware of the satisfaction that can be gained without penetration. Techniques taught by sex therapists can result in the sexual fulfilment of both parties and some men have found the experiences of these techniques as being even better than their previous sexual encounters.

So there is life after treatment in spite of everything.

Incontinence: There are two types of incontinence associated with treatment for prostate cancer.

Bowel or faecal incontinence is the more serious of the two and is associated with radiation treatment rather than surgery, where it is rarely reported. It occurs in radiation treatment because of the close proximity of the prostate gland to the bowel and bladder. The occurrence, according to most studies, is not high and appears to be falling with the introduction of more modern equipment capable of focussing the radiation beams with a greater degree of accuracy. It is very rarely reported in conjunction with brachytherapy or proton beam therapy carried out by an expert operator. Severe bowel incontinence is difficult to remedy - the damage done by radiation makes surgery almost impossible. In some cases colostomy is an option, to provide a better quality of life.

Bladder or urinary incontinence occurs with both surgery and radiation treatments. The degree of incontinence can vary from what is termed stress incontinence - the most commonly reported variety - to complete lack of control. Stress incontinence occurs when a small amount of urine escapes in conjunction with actions such as coughing, sneezing, laughing or lifting and can often be controlled by building up the muscle in the area. This is done by practicing what are known as Kegel Exercises, which consist of tightly clenching the relevant muscles, holding the tension, relaxing and repeating. To get a feel for which muscles are involved, men should start urinating as usual and then stop the stream. That is the action required in doing Kegels. The exercise should be done in short sets repeated at intervals many times throughout the day.

If the leakage problem does not respond to these exercises, the usual recommendation is for the man to wear incontinence pads, especially if a comparatively small amount escapes. Mechanical devices such as a penile clamp can be used to stem the flow, medications may provide some relief, and condom catheters with collection bags are available. Various degrees of success have been reported with these means.

For incontinence that cannot be dealt with by any of these methods, an indwelling catheter can be fitted to drain the bladder into a suitable receptacle. It may even be possible to surgically install a male sling or an artificial sphincter to regain control of the bladder. The reported success rate for these operations is not high, particularly in cases of high-volume incontinence.

Another aspect of bladder incontinence, not often mentioned, occurs during arousal for sexual intercourse, which can cause leakage of urine. This happens frequently and can be particularly disconcerting to some men and their partners.

On the opposite end of the urinary scale from incontinence is stricture, where it becomes very difficult to urinate, usually because of the build-up of scar tissue. Although surgery will often alleviate this condition, it is often not helpful for men with keloid scars. In those cases, a urethral stent may be helpful.

It is important to bear in mind that the definition of incontinence can vary tremendously. Some studies do not regard a man who uses two pads a day as incontinent. This may not be the man's view.

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GO NOW to Part 5 - Remission