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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