THE NUTS & BOLTS OF PROSTATE CANCER FOR EVERY MAN'S TOOLBOX
JO MILIOS, MEN'S HEALTH PHYSIOTHERAPIST
Jo Milios is a Perth-based Australian physiotherapist who specializes in men’s health, focusing on: Prostate Cancer pre & post rehabilitation, incontinence, erectile dysfunction (ED), sexual health issues, pudendal neuralgia, chronic pelvic pain and exercise prescription.
Working in tandem with urologists, general practitioners, psychologists and sexual health physicians, Jo has three clinics, one north of the river in Carine, one south of the river, in Palmyra and a country clinic in South West Busselton. With >20 years experience as a muscuo-skeletal therapist, the big gap in men’s health services proved pivotal in her decision to specialize almost a decade ago.
In recognition of the big gaps seen in men’s health programs in the community, Jo set up ‘PROST! Exercise 4 Prostate Cancer Inc.’, in 2012, a non-profit organization with the aim of providing an exercise and peer support program for ANY man with prostate cancer no matter his age, stage or prognosis. The PROST! exercise club is based at Subiaco Football Club in Leederville and for a small fee, an exercise physiologist trained in prostate cancer recovery, is delivering this program on Tues & Thur mornings. While currently undertaking PhD studies at UWA’s School of Sport Science, Exercise & Health, researching the benefits of the cardiovascular exercise and pelvic floor muscle training in men, the ‘’PROST!’’ members are often involved in research projects, with all profits raised going back to the community. Jo has presented her research findings at several international conferences, including 2015’s World Confederation for Physical Therapy in Singapore and regularly speaks to GP’s, allied health professionals, and the public. As part of a team known as the “Martians", Jo also provides workshops for physiotherapists keen to updating men’s health physiotherapy skills.
Finally, PROST! Inc is proud to announce the release of an exercise DVD called, ‘JOGA! 4 MEN!’, a unique blend of Yoga, Pilates & Physiotherapy for the very day man, no matter his age or fitness ability. At $25/copy, all funds raised will go directly back into clinical research & education programs for men, to assist others in building their own mood, muscle and mateship.
For further information please visit Jo's website or email her at info.prost.inc@gmail.com
Phone: Carine & Busselton (08)9203 7070 | Palmyra (08)9339 1932
Prostate Cancer outnumbers breast cancer in all the important stats: 1 in 6 men vs 1 in 9 women will be diagnosed in an average lifetime. There will be 1/3 more cases diagnosed/year and 1/3 more deaths/year than breast cancer. Any man with a first-line male relative such as a brother, father, or uncle with prostate cancer has a 1 in 2 chance of being diagnosed. Any man with a first-line female relative with breast, ovarian or uterine cancer has a 1 in 4 chance of being diagnosed. This includes a mother, sister, or grandmother. Any man who reaches 85 years old will have a 1 in 4 chance of diagnosis, to join the 1 in 2 men who will be diagnosed with any form of cancer, again beating women who have a 1 in 3 risk. Every man will die with prostate cancer, although it may not be the thing that kills him. Dying of prostate cancer is completely avoidable and it basically comes down to education. Ready to find out?
There is hot debate all around the world about screening for prostate cancer. It’s a simple blood test to detect the level of Prostate Specific Antigen (PSA) that gives the most important clue, but many medical bodies do not recommend blanket screening. That’s okay, but everyday people should be armed with a little bit of knowledge, men especially. Talking about the private parts is a forbidden language in boys land, but in this era of information anytime, everywhere there really are no excuses. Just last week a past patient contacted me to ask this question: "How can my 45-year-old best friend be diagnosed with terminal prostate cancer and given 6 months to live in this day and age?"….. Fortunately, the evolving men’s health landscape means this type of diagnosis is a rarity today, but just twenty years ago it was commonplace. Leading international urologists and oncologists don't want to return to yesteryear when the first a man who knew about prostate cancer was a severe onset of back pain- metastatic bone disease from advanced tumor growth- or a missed diagnosis!
In every man’s toolbox of life skills should be a section that is titled "Health”. In it, the unique characteristics of all that is male should be addressed. Starting from an early age, say 10-12 years old, boys should be introduced to the workings of their reproductive organs, their anatomy, and what is ‘normal’ and what is not. Correct terminology using words such as ‘testicles’, ‘penis’, and ‘foreskin’ is highly recommended, and pictures, Dr. Google, and healthy conversations are all part of the educational process. The changes inherent in puberty –hair (lots of it), voice changes, erections, wet dreams, sexuality- need to be aired and demystified. By 15 years old, boys should know how to perform a testicular check, and learning about it from a significant ‘other’ male is highly recommended. Why? Because testicular cancer is the second most common cancer of young males aged 15-30 y.o. If caught early, there's a 95% survival rate. Left undetected, death is a possibility. Lifetime testosterone replacement may be a part of treatment, but too much of it can cause prostate cancer, so knowledge is always power.
Back to prostate cancer. When should a man first get checked? Quite simply it's never too early to get a baseline PSA test, especially if there is any family history of the disease. My youngest patient was 37 years old and he needed to bank some sperm prior to his life-saving radical prostatectomy to ensure he could one day father children. Three years later and he’s a father to 1 & 1/2 kids, cancer-free and living life to the fullest. He also runs a ‘Younger Men’s Prostate Cancer Support group’ through the Prostate Cancer Foundation of Australia, a network that links men with other men diagnosed with the same condition. A normal PSA should be within a range that is expected for the age of a man. Any change over a period of time that is greater than the expected rate needs to be investigated. Often this is in combination with the digital rectal exam (DRE), the much dreaded ‘finger up the bum’ test. By putting these two indicators together, a doctor will usually refer a man to a Urologist who will most likely perform a trans-rectal biopsy examination under anesthetic, if there is any hint of concern. A grading system, known as TMN (tumor, nodal, metastasis) staging PLUS a Gleason Score, will then rank the core samples as being in tumor stage I-IV, with a Gleason score from 5-10. A Gleason score less than 7 is not usually treated, but rather watched under active surveillance, which means repeat PSA, DRE, biopsies, and nowadays MRI's, for as long as required to ensure the prostatic changes do not develop into an aggressive cancer. A man with a Gleason score of 7 or 8 will usually be given the option to complete prostatic removal – or Radical Prostatectomy- surgical treatment with curative intent. Today, options available to patients include surgery which is open, laparoscopic, or robotic-assisted. Without a doubt, the single most important factor is to be in experienced hands. Don’t be afraid to ask your surgeon how many cases he/she has done and what his/her success rates are. An option for nerve-sparing and lymph node resection should also be discussed as these can influence long-term side effects, such as: erectile dysfunction and lower limb swelling.
Side effects? A MAJOR reason for not going for a men’s health checkup in the first place is the FEAR of potential side effects should prostate cancer be diagnosed. 'Treatment is worse than cure’ is a well-used expletive in my experience and to a certain degree this is quite true. Or rather, used to be. Anyone treated with surgery since Prof Patrick Walsh’s pioneering 1984 procedure will most likely have suffered with urinary incontinence and erectile dysfunction as reward for a cancer clearance. No man wants to hear these words, no man wants to wear a nappy, and no man wants to know his penis will not work to save his life. But it’s a reality men are forced fed upon diagnosis.
Like my own father, less than 12 months ago. I’ll never forget that phone call because it was on the eve of the most important presentation I’ve ever done at Singapore’s World Confederation of Physical Therapy in 2015. Due to speaking about the prevalence of prostate cancer and men’s health the following day, I was shocked to learn it had now entered my own front door…..
Without a moment’s pause, I instructed my dad to relax his shoulders and his belly, to imagine holding onto a pee, and to "lift his nuts to his guts", with a focus on lifting the front vs back passage in an effort to start training his pelvic floor. I’d already prepped over 2000 other men for radical prostatectomy surgery, so it was a very natural conversation for me to have and my father was most grateful for the opportunity to speak candidly. Of all the lessons I’ve learned in over a decade of specializing in men’s health, ‘getting the language right’ is one the biggest. To be too technical or medicalized can be quite daunting for the average bloke, particularly when faced with the shock of a cancer diagnosis and all that it entails. Time off work. Hospitalization. A catheter. Loss of control. Impacts on relationships –sexuality, masculinity, morbidity-all hit a man hard when given the unwelcome news, ‘you have prostate cancer’…….
Other invaluable lessons learned include the need to start pelvic floor muscle training as early as possible upon diagnosis, no matter the type of treatment prescribed. Even for men with advanced prostate cancer requiring radiation and androgen (hormone) deprivation therapy learning about sphincteral control is important for both bowel and bladder continence, which are commonly affected during treatment. Knowing which sphincter controls what, where, and how are vital tricks of the trade in this department and can spare a man from unnecessary accidents. Knowing which type of pads to purchase (men’s), which color pants (black) to wear, and what not to drink (caffeine-even green tea- and alcohol) are essential ‘survivor’ tips most men will appreciate, and the sooner, the better! Getting fit and losing some weight prior to treatment is also highly recommended, with simple activities like walking for 30mins/day ticking lots of boxes. Being sedentary will NOT help activate and strengthen the pelvic floor, before, during, or after treatment, so the time to get moving is NOW! Any reduced fatty tissue in the abdomen will greatly assist the surgeon in his efforts to resect cancer, but will also allow for more precise sparing of the adjacent cavernosal nerves which are responsible for penile blood flow and the second, and perhaps most significant, long term side effect of treatment after urinary incontinence.
SEX! Let’s talk about it because so long as a man is breathing I’ve learned that most men have the desire to be "up for it". Age is no barrier and the potential for ‘things down there’’ to work is almost paramount to survival for a man. Many frank conversations have taught me this fact and my own father was no different! In fact, my mum was far more prudish about the conversation and even had the typical reaction many post-menopausal partners possess: "it doesn’t bother me if we never have sex again"…which is NEVER something a man wants to hear. It’s a time for many couples to confront issues that may have never moved from the bedroom, but neglecting this conversation is careless for the long-term mental and emotional well-being of most blokes.
How long does it take for impotency to set in and recover? It’s a Q&A session I run every day in my clinic and there are numerous correct responses, because, to be honest, there is no such thing as ‘normal’. Most men who undergo surgery will immediately have erectile dysfunction and this is expected in 100% of cases. If a man undergoes radiation or hormone therapy the impact is generally slower to occur, but at 3 years post-treatment all modalities will result in similar levels of potency. Sadly, the news is not too optimistic for long-term sexual recovery with less than 20%, or about 1 in 6 men recovering pre-treatment erectile function. Added to this is an average penile length loss of 2.3cm at 12 months of surgery which should be expected and talked about prior to surgery. When I first learned about this some years ago I was horrified and since then, have made it my special interest topic. Guys may not want to talk about this initially, but they tend to quickly regret not asking for more information if they decline. The length of a man’s penis may not seem like an important issue for the average 65 y.o. old, but when it comes to topics searched on Google this ranks number one. Again, whether he’s aged 37 or 77, no man likes the thought of permanent shrinkage, and with education, it too can be avoided.
So the ‘how’ and ‘why’ of this very important conversation comes under the heading ‘Penile Rehabilitation’, because essentially it’s a recovery process that takes some time, effort, and innovation. Simply put, the penis consists of 3 main chambers of spongy, vascular tissue that need 'irrigation' to keep their 'potentiality' alive. Normally blood flow is maintained 24/7 by the human body’s own regulatory system that includes 4-8 nocturnal erections every night, lasting approx. 10 minutes each. So, regardless of sexual activity, there is a constant rise and fall of penile blood flow which stretches, lengthens, and maintains healthy tissue so that when the opportunity arises, normal erection and ejaculation can occur. During a radical prostatectomy, however, traction, heat, and bruising of the nerves responsible for blood flow cause immediate neurovascular changes which result in erectile dysfunction or as I put it, ‘comatosed nerves’. Nerve healing will take a minimum of 6 months and up to 48 months to repair (and this is ONLY if the nerves are spared) and the uniqueness of each individual’s time frame of improvement should not be underestimated. What’s critical about this time, however, is the first 6 months where the motto,' use it or lose it’ should be every man’s war cry. Without stimulation, penile tissue loses its elasticity, length, and girth…..and can potentially lead to Peyronie’s disease, which is penile curvature due to calcified plaques, another surgical situation.
Quite recently a 46-year-old prostatectomy patient knocked on my door, approximately 1 year after his robotic-assisted radical prostatectomy. He was miserable and had some questions to ask about the “altered appearance of his manhood”. To illustrate his concerns he presented me with a photo of his erect penis that had an upward curvature and left lateral bend of approximately 45 degrees. Although his erections were firm enough for penetration, the rather acute bend was so severe that this was a case of missionary impossible! This young man was in complete despair. He had beaten cancer, incontinence, and even erectile dysfunction, but was now faced with a sexless, new reality…..
I immediately began to read up, searching for the answers and a cure. What had this man not done or had he somehow contributed to Peyronies Disease in any way himself? The scientific papers are endless on this topic and new evidence suggests that 16-19% of men who undergo a radical prostatectomy develop this disorder between 12-14 months after surgery. Potentially 1 in 5 men???! The how and the why of this situation actually relates back to penile rehabilitation or in this case, a lack of it. Let me explain……
If a man has 4-8 nocturnal erections a night for 365 days of the year that equates to 1460-2920, or an average 2190 MISSED ‘housekeeping’ erections in the first 12 months following treatment. This results in a reduced capacity to dilate and oxygenate the tissues essential for normal penile function. As a result of reduced local blood flow, the spongy tissue starts to shrink and fibrose and the longer this continues, the harder the tissue becomes. Calcified plaques can start to form and with it an onset of pain, inflammation, and curvature follow. It is thought that this can be completely avoided if a combination of medications known as PDE5 inhibitors (Viagra, Cialis, and Levitra) are commenced within the first 4-6 weeks of treatment, in tandem with regular use of a vacuum compression device (3-5 sessions/week) to stretch the penile tissues. Men who desire sexual activity early in their recovery can use intra-cavernosal injections to give an immediate erection which has the double effect of stretching and lengthening erectile tissue. A combination of all three can certainly be used and this may be short-term or ongoing, depending on natural recovery and individual needs. But abstaining from penile rehabilitation is not recommended. A GP, Urologist or Sexual Health Physician can provide appropriate prescriptions and whilst erectile dysfunction is apparent, penile rehabilitation should be prioritized. But there are always two sides to a story…
Landing on my @prostatejojo Twitter page only last week were two new scientific papers highlighting ‘patient regret’ following surgery for prostate cancer. One day later a 55-year-old gentleman attending his first post-operative review, broke down in tears, severely depressed and in complete shock at the loss of bladder control and absence of ejaculate fluid. The same day a 49-year-old patient waltzed through my rooms, also a first post-op review, ecstatic that he was already free of continence pads and quite chuffed to report early morning ‘movement at the station’. Again, the uniqueness of each case should not be underestimated, so there are some definite trends I’d like to now highlight. Think of this as your 3-4 month program, with 1-month pre-op and 3 months post-op.
Pre-operative pelvic floor training should be encouraged at diagnosis point, with 4-6 weeks recommended. Pelvic floor muscle (PFM) exercises should be stopped while the catheter is in situ, and then recommenced until continence has recovered, with a long-term maintenance program of 2 sets/day of PFM exercises encouraged. Most men should be dry within 6-12 weeks of surgery. DRY MEANS NO PADS!
PFM exercises should be done in a range of positions and individually prescribed, following assessment to ensure an appropriate training schedule is designed for the individual. Too many exercises can lead to fatigued and tender PFMs and too few can delay recovery.
Usually, 3-5 sets of PFM exercises /day are encouraged with a combination of ‘fast’ and ‘slow’ contractions encouraged.eg 1 set = 10 quick (1 sec each), followed by 10 slow (hold 5 sec, rest 5 sec), gradually building up to 10-sec hold, 10-sec rest.
Bladder irritants include anything with caffeine- tea, coffee, green tea, cola drinks, fizzy drinks and alcohol- should be avoided in the peri-operative phase. Water or decaf substitutes need to be on the menu for at least 3 months to minimize leakage.
Men should be encouraged to stretch their bladder capacity by avoiding ‘just in case’ visits to the toilet and to ‘hold longer to make stronger’, with a void every 3-4 hours during the day recommended as optimal.
Night time should be for sleeping. If there is a bladder urge that wakes the man, he should get up and empty rather than tossing and turning. The ‘full bladder’ signal is the body’s autonomic nervous system at work and is indicative of maximum detrusor(bladder)stretch.
Continence pads should be weaned off as early as possible, particularly when not required e.g. night time. The more active a man is, the longer he is on his feet, the more likely the PFM will fatigue in the early weeks, but this gradually improves. Afternoons are always worse than mornings and if there are evening social activities, sit rather than stand to prevent PFM fatigue. Combining alcohol and standing is never recommended at this point!
The ‘knack’ or a ‘nuts to guts’ lift should be performed just before actions such as sit to stand, cough, squats, and getting into a car/bed/trousers to avoid leakage. Co-contracting the pelvic floor with the abdominals during times of increased intra-abdominal pressure will greatly minimize the amount of leakage. Lots of practice usually leads to this new neuromuscular pathway becoming almost automatic, with emerging research revealing a PFM response time of 0.7sec is necessary to close the urinary sphincter to prevent leakage. So practice the quick PFM exercises briskly and try and achieve 10 in 10sec or less!
Rest is important. Fatigued PFMs need it! Tired muscles often stop ‘talking’ to the bladder, giving the man no indication of passive leakage, so sodden, wet nappies can be an unwelcome surprise. Tight muscles-those that are trained too hard or too often- will lead to perineal pain and quite often the sensation of hemorrhoids forming. A happy, bouncy PFM is the key.
I often recommend my patients to split their day in half, with the mornings being their most active time of the day and the afternoons for rest, or at least a 1-2 hour ‘lie down’ period to recharge the fatigued PFM.
Increasing activity gradually is essential. Walking 2 x 15 min exercises/day initially, then gradually building to a 1-hour brisk, hilly walk will challenge the PFM to cope with vibration, shifts in gradients, effort, and changes of direction.
Adding whole-body exercise training from 6 weeks post –op will encourage improved neuromuscular cross-talk and 3 x 60 min sessions/week of cardio and resistance exercise in a gym setting will enhance recovery, mood, and masculinity. There is also a host of research that proves PSA, fatigue, stress, and fitness will also respond positively to exercise.
Returning to work is encouraged from 4 weeks post-op for men in sedentary occupations and from 6 weeks for more physical workers. Most men will need to ‘man up’ to work for their mental, physical, and emotional well-being.
Lifting more than 5 kg (11 lbs) is not recommended for the first 6 weeks post-op, to ensure the risk of inguinal and abdominal hernias forming is minimized.
Carrying a backup pad supply is a necessity. Pockets, glove boxes, and brief cases should be well stocked. A man-bag is not a bad idea either!
Weaning off pads from full pants, to large pads to small pads and eventually men’s liners or shields is a logical progression. Reducing the size, dependency and biofeedback that pads provide is a necessary bio-psycho-social step. Get rid of them when you don’t need them!
Only accept full continence to be WEARING NO PADS and LIVING LIFE FULLY without bladder accidents. Every man should be able to achieve this with the correct training.
Only 2% of patients will need surgical intervention for ongoing leakage beyond 1-year post-op. Every man has the right to be dry. A bladder sling is the first step. If this fails an artificial urethral sphincter is the next and has a 99% success rate, even in the most incontinent of cases!
Erectile Dysfunction is just as important as Urinary Incontinence to improve. Most men can have success with both if guided by a team approach that includes urologists, continence nurses, physiotherapists, sexual health physicians, and psychological support.
No man should live with untreated side effects from prostate cancer surgery. There are solutions and quality of life needs to be the focus of the life that is saved.
As a final offering, the most important knowledge a man should have is to never be satisfied if things aren’t right. It's never okay to macho it out, to be embarrassed about asking for help or to suffer in silence. It's never okay to bury heads in the sand, or to not share medical history with male members of the family, given the highly inheritable rate of this disease. No man need be wet or impotent for the rest of his days. As the great Nelson Mandela always said "Education is the most powerful weapon in which to change the world’’. So pack these tools into your hands, hearts, and heads and empower the men beside you. Being that 1 in 6 men with a prostate cancer diagnosis is not a desirable statistic, but a statistic too big to ignore!
This information is not intended to substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a healthcare professional with any questions you may have regarding treatment, medications/supplements, or any medical diagnoses. This information is intended for educational purposes only and is in no way to substitute the advice of a licensed healthcare professional.
