Photograph of Fiona White and Alan White

For Partners of Men with Prostate Cancer – What to Expect – Part Two

Reminder of the statements to bear in mind as you read this article:-

  • I am not a healthcare professional and my comments do not constitute medical advice.
  • I am a woman, so my perspective as a partner may be different from that of a male partner.
  • My experience particularly relates to a man who had robotic surgical removal of the prostate gland, so it is likely to differ from the partners of men who have other types of treatment.
  • All men will experience prostate cancer and treatment differently – there is no “one-size-fits-all” experience.

So, you’ve read Part One of this article and you’re up to the really big bit – dealing with the healing.  This article is about your long-term mutual recovery from prostate cancer treatment.

I’m going to keep the discussion of sexual recovery fairly superficial, because that aspect of healing is far more complex than one article can cover.  The emotional, psychological and spiritual side of sex after prostate cancer deserves much more careful and respectful treatment.  Watch this space!

Dealing with Side-Effects – Incontinence

This is where you need to remember that you are both in this together.  The most common side-effects from prostate cancer surgery are incontinence (being unable to control your bladder) and erectile dysfunction (being unable to get an erection, or maintain one).

Some men will face the double whammy of both urinary and bowel incontinence.  We were fortunate that Alan did not lose bowel control.  For anyone facing that side-effect, I strongly suggest that you check out the Continence Foundation of Australia.  Their website and magazine are fantastic, as well as their free helpline 1800 33 00 66.

Generally, most men will focus on bladder control before they address their lack of sexual function.  As Alan discovered after his catheter came out, he did not even realise that he was leaking.  We went out for coffee after he’d had the tubing removed.  We were enjoying our coffee and chatting with the staff at our favourite café, when Alan suddenly realised that his pad was completely saturated.  Even worse, his light-coloured trousers had a wet urine stain for all to see.

We had another funny / not funny thing that happened around the time Alan got his catheter out.  He had placed an order for some incontinence pads.  When the boxes were delivered and we opened them up, the product was definitely not what we were expecting.  Imagine a toddler or a baby wearing a disposable nappy – great big, bulky padding between the legs and adhesive tapes at the side to adjust the waist.  Funny, but not funny!  Fortunately, we were able to exchange these for something a little less chunky and unappealing.

Photograph of man wearing incontinence pullups
Does my bum look big in these?

I’m fairly sure that no adult wants to wear an incontinence pad.  For many men, this is an emotional and psychological shock to the system.  Apart from the sensation of wearing a pad wedged in his undies, Alan was also concerned about any potential odour.  He has a very sensitive nose and is hyper-alert to unpleasant smells.  To this day, he uses baby powder in his jocks to minimise any potential urine odour.

Leakage is still a problem for us, even now that it’s been about nine years since Alan’s surgery.  There have been some nights (fortunately, not many) that he has leaked in bed.  I know that he is absolutely mortified by this.  I also know that he really can’t help it.  There are special sheets, mattress protectors and “underpads” available for much more serious nighttime wetting.

In a recent post on this website, Alan has written extensively about incontinence.  If your partner is experiencing more significant bladder (or bowel) control issues, you may find Alan’s article helpful.

Advice for Partners During This Phase

There may be partners reading this article who have experienced their own difficulties with incontinence.  I haven’t had children, so my pelvic floor hasn’t had to deal with childbirth – phew!  If you are a woman who has had post-birth dribbles or spurts, you know how it feels.  Have sympathy for your man.

Women go through a lot in their lives.  Most women will have experienced periods (oh, yeah), and many will have had little spills and “accidents” along the way.  I vividly recall being a heavy bleeder in my teens.  My mother made me sleep with towels underneath me because I was so prone to leakage.  The shame factor was high in my household.

Keep these memories at the front of your mind when dealing with your partner’s current state.  Never, ever shame him or humiliate him.  Take it in your stride if he has the occasional spill.  If things don’t improve as the months (and years) go by, you may both need to seek further help – see Alan’s article on incontinence.

The other thing I can remember from my teens and early 20s was fear of leaks in public.  I’m sure that I spent an exorbitant amount of time worrying about this.  As Alan experienced, leaking while you are out and about can be embarrassing.  Staying close to toilet facilities can be comforting.  There is an excellent public toilet map app for mobile phones. 

This app provides:

  • the location of the nearest public toilet
  • details of opening hours, accessibility, parking and other features
  • a way to plan short and longer journeys and locate toilets along the way; and
  • the ability to save toilet information and trip plans.

Drinking alcohol seems to make bladder problems worse.  Alan has noticed over the years that he is more likely to leak if he’s had a drink or two.  There’s a good article about this on the National Association for Continence website (which is an American site).

Dealing with Side-Effects – Erectile Problems

The other side-effect of prostate cancer surgery (and some other forms of treatment) is ED – erectile dysfunction.  The following explanation comes from an excellent resource – The Healthy Male website:

What is erectile dysfunction?

If you’re having difficulty getting or maintaining an erection, this is called erectile dysfunction. It’s not a disease, but a symptom of another problem, which might be physical, psychological, or a mixture of both.

Erectile dysfunction is very common.

An Australian survey showed that at least one in five men over the age of 40 has an erection problem, and about one in ten men are unable to have erections.

Most blokes take it for granted that they will be able to get erections whenever they want, and be “hard” enough to have penetrative sex.  Many men have no idea that things can change over the years, even without prostate cancer.  Just getting older can affect sexual performance.

When Alan came home from hospital post-surgery, his penis was a tiny, pale version of its former self.  “Percy” really looked like he had been through the wars.  Believe it or not, Percy looked smaller and less alive than the plastic wind-up toy below.

Photo of wind-up jumping pecker toy
“Jumping Pecker’ wind-up toy kindly given to us at one of Alan’s talks

The surgery usually results in men losing penile length and girth.  Not all men are aware of this beforehand and it comes as quite a shock.  Regaining an effective erection can be a significant challenge and can take months or years.

Viagra is famous – the little blue pill – but it doesn’t have quite the instantaneous effect you might expect.  All those jokes and nudge-nudge wink-wink comments really aren’t accurate or helpful.  It’s important for your partner to remember that the signals from his brain to his penis are likely to have been damaged by surgery.  They may work sometimes, but suddenly stop working right in the middle of sex.  Very unfair.

Using injection therapy is one way to get an erection after prostate cancer treatment.  Many men are understandably put off by the idea of sticking a needle into their old fellow!  Whenever Alan injects himself, he rewards himself by eating a piece of chocolate straight after the jab.

Even using the needle doesn’t guarantee a rock-hard erection.  The penis is usually engorged (full), but not really firm.  Alan has a saying that he found somewhere – it’s like trying to play snooker with a piece of cooked spaghetti.

Something else that you and your man may not be aware of (or may not fully appreciate) is that any orgasms he has from now on will be DRYWhen his prostate was taken out:

the tubes from the testicles (vas deferens) are sealed and the prostate and seminal vesicles are removed, so semen is no longer ejaculated during orgasm

Apart from sex being far less messy, this naturally means that your man is now infertile.  If he’s younger and you were hoping to have children, this is where I hope your doctor discussed sperm storage with you before the operation.

Alan has told me that he still finds it slightly weird to have orgasms without ejaculation.  The orgasms are intense and very enjoyable, but he does find the sensation rather strange.

New approaches to nerve grafting are being tested in Australia, with promising results at this early stage.  The new procedure hopes to help men who have not been able to regain erectile function years after their prostate surgery.  Professor Declan Murphy, urologist, discussed this with Victoria Cullen on a recent video.

Penile implants are another option for men who are unable to regain their erections after trying other methods.  This is obviously a much more expensive and invasive approach, but it does work for some men.

Penile implant surgery is a permanent solution for those men who fail to respond to all non-surgical therapies and who have a clear physical cause. A penile prosthesis is an inflatable device that is surgically implanted into the penis. It can create erections via squeezing the pump of the device, which is normally located in a testicle. Penile implants are irreversible and can be quite costly.

There are other ways your partner can help overcome his erectile dysfunction.  Generally speaking though, they all take time.

We recommend that men and their partners check out A Touchy Subject – the website of our colleague, Victoria Cullen.  She has detailed information and great videos about penile rehabilitation.

Advice for Partners During This Phase

I recommend large doses of patience, affection, perseverance and a really strong sense of humour.  You are now in the developing “new normal” phase of your life together.  This can make or break relationships.  Don’t underestimate the importance of keeping yourselves both healthy and communicating really well with one another.

Women whose partners are diagnosed with prostate cancer are often at their own life turning-point – menopause.  In my personal experience, this can throw a curve ball into the relationship.  Both your sex life and your relationship itself can be badly affected by menopause.  I have written a couple of articles in the past about this topic and I heartily recommend the Jean Hailes For Women’s Health website. 

Don’t struggle with your own issues at the same time as you’re helping your partner deal with his – get some help.

One of the most important things that I would emphasise here is communication.  If partners are able to communicate well with one another, they are much more likely to successfully navigate their “new normal”.  A healthy relationship is key to overcoming the problems caused by prostate cancer.

On a purely practical level, be as flexible as possible regarding sex.  Please don’t put it in the too hard basket (or let your partner put it there).  Even if his penis struggles to raise its head (don’t laugh), you can both still have fun (and orgasms).  Performance anxiety is a definite erection killer, so don’t focus on his ability (or inability) to get a rock-hard penis.

Whatever you both choose to do as time goes by, always keep fun and affection alive in your relationship.  This is a terribly challenging time for your partner and your response can make a substantial difference to his life.  Remember that your whole body is an erogenous zone, so why fixate on one part of it?

If you’re not able to achieve penetration and you’re both missing “sex”, you could explore some other ways to give each other pleasure.

Finally, I would stress that hope is a huge help for both of you.  Don’t get disheartened and give up.  Progress may seem slow, but my experience tells me that hope is worthwhile.

Remember why you loved your partner in the beginning and hold that memory close.

I know that this article has merely skimmed the surface of life for couples after prostate cancer; however, I really hope it helps you.

Please do get in touch with us if you want any further information – or if you have any insights that have particularly helped you.  Don’t be shy!

Alan White talking with his wife Fiona watching

For Partners of Men with Prostate Cancer – What to Expect – Part One

A few quick statements to bear in mind as you read this article:-

    • I am not a healthcare professional and my comments do not constitute medical advice.
    • I am a woman, so my perspective as a partner may be different from that of a male partner.
    • My experience particularly relates to a man who had robotic surgical removal of the prostate gland, so it is likely to differ from the partners of men who have other types of treatment.
    • All men will experience prostate cancer and treatment differently – there is no “one-size-fits-all” experience.

As you can tell from the title of this article, this is “Part One”.  There is such a lot of ground to cover, so I’ve broken it into two articles to make it easier to digest!

Initial Response to Diagnosis

When your bloke is diagnosed with prostate cancer, it usually comes as a huge shock.  Fear, confusion and anger tend to appear soon.  “Why me?” is a fairly common question.  Prostate cancer isn’t fussy about who it targets (except that they have to be male, of course).

If your partner is diagnosed nice and early with low-risk prostate cancer, it’s both a good thing and a bad thing.  The good thing is that he is likely to have more treatment options.  That’s also the bad thing – making a decision between the different treatments is generally really difficult.

Should he get his cancer cut out?  Should he opt for some type of radiation therapy?  Can he cope with delaying treatment by doing Active Surveillance?

When my husband, Alan, was diagnosed for the second time, the cancer was considered to be aggressive.  This meant that he could no longer do Active Surveillance.  It meant that he had to choose a treatment.

I remember this time very well.  It wasn’t fun – he was very emotional and very moody, which was totally understandable.  I didn’t feel that I had the right to tell him which treatment to choose.  It was Alan’s body, so even as his wife I felt that I needed to let him make the decision.

At this stage, most men and their partners are probably focused on staying alive.  The C-word (cancer) tends to cause a great deal of fear, and often for good reason.

The good news is that prostate cancer which is diagnosed when it’s still in the low-risk phase, usually places the man in a good position to avoid dying from the disease.  The following information (from the Prostate Cancer Foundation Australia – PCFA) concludes:

A ten-year Australian study has shown that localised prostate cancer has a major effect on the lives of men for many years. Men who have been treated for this cancer live longer, but they are not all living well. . . 

While 95% of men are likely to survive at least five years after diagnosis, one in four will subsequently experience anxiety and up to one in five report depression.

So, staying alive is highly likely, but the quality of life after prostate cancer is critically important to address.

Advice for Partners During This Phase

In my experience, this is a time to be extremely patient and very supportive.  It isn’t comfortable to watch your man cry, but it’s probably best that you let him release those emotions.

Look after yourself so that you have the strength to look after him.  I found it easy to let myself get upset in sympathy with Alan, which tended to drain my energy.  Keep an eye on your own energy levels and make sure that you are both eating well and keeping physically healthy.

Try not to lose your cool.  It can be tempting to snap occasionally, but count to ten in your head and stay calm.

I felt as if Alan was going around in circles sometimes – he was continually blaming himself or questioning what he had done wrong that could have led to the cancer.  This went on for a long time (even after his surgery), but it was something that he needed to process before he could accept the situation and focus on his treatment.

I remember the shock of hearing Alan’s urologist tell us that the cancer was back and that it was aggressive.  We were both expecting him to get the all-clear.  We had only been married for a couple of years and I instantly thought that I was going to lose my husband to cancer.  This is where you both need to breathe deeply and focus on the task at hand – deciding what to do about the prostate cancer.

Remember that the odds are good for men with low-risk prostate cancer and don’t give in to the panic.  Also, if you fall apart, how will your partner feel?

This may be a time for you to take the occasional time out for a cuppa with a close friend.  Keep your spirits up and stay positive.  Carers Australia can be a great resource for you at this stage.

During the Decision-Making Process

This is a very important period for your partner (and yourself).  There’s a thing known as “decisional regret” which men can experience after they’ve undergone treatment.  It is likely to be more common in men who don’t know enough about the treatment and its typical outcomes.

In the past, some specialists would bulldoze men into making decisions on the spot.  Thankfully, this is much less common now.  The famous “second opinion” can be a great help.  The following comments are taken from the Cancer Council’s website:

You may want to get a second opinion from another specialist. Some people feel uncomfortable asking their doctor for a second opinion, but specialists are used to patients doing this.

A second opinion can be a valuable part of your decision-making process. It can confirm or clarify your doctor’s recommended treatment plan and reassure you that you have explored all of your options. A second specialist can also answer any questions you may still have.

Your original specialist or family doctor can refer you to another specialist and you can ask for your initial results to be sent to the second-opinion doctor.

In Alan’s case, he had been practising Active Surveillance for ten years and had a reasonable amount of knowledge about prostate cancer treatments.  Even so, being faced with making the decision for yourself is always different from just “knowing stuff”.

Alan read books and gathered information – he was tossing up between surgery and radiation therapy (specifically, brachytherapy).  One book that he read is well worth checking out at this stage in your prostate cancer journey – Dr Prem Rashid’s Your Guide to Prostate Cancer (now in its third edition, so you can tell it’s very good).

It’s so important for men to find out as much as possible about each of the treatment options – side-effects, recovery period, cost and realistic life-saving prospects.  Again, there is no one right treatment option for all men with prostate cancer.  This can do a man’s head in!

Advice for Partners During This Phase

You can really help your partner by listening to him.  Allow him to express his emotions so that they don’t build up and cause problems.  If necessary, suggest that he speak with a counsellor or psychologist to help him through this highly stressful period.

Make sure that he knows how much you love and care for him.  Again, resist the urge to tell him what to do or to lose your temper with him.  It will be better for both of you if you can keep yourself on an even keel.

If possible, make sure that you attend your partner’s medical consultations.  Take a notepad (or make notes on your smart phone) so that you will remember the important things that were discussed.  It’s also great psychological support for your partner and helps him to feel that he doesn’t have to go it alone.  If you find something confusing or if you feel the need for more information, don’t hesitate to ask the specialist.

There is plenty of information available on the internet about prostate cancer and about the treatments.  It’s best to stick to the high-quality medical websites and avoid the shonky ones.  The following sites are probably the best ones to start with:

Make sure that your partner has access to as much reliable information as possible (or as much as he can manage).

There are also support groups around the country.  It may help him to contact the leader of his nearest group.  Alan is the facilitator of our local support group and he often gets calls from men who have just received a prostate cancer diagnosis.  We have also met up with couples to have a chat over coffee so they can talk about their prostate cancer diagnosis and how they’re travelling.

Treatment Time

This is the beginning of a new phase in your man’s life and it will also be the start of a new phase in your relationship.  “Before treatment” and “after treatment” will become the two stages of your life together.

After Alan’s return from hospital, we were dealing with the immediate aftermath of his surgery.  Tiny scars on his abdomen and a lovely tube coming out of his penis – the catheter.  He found it difficult to bend at first, so I needed to help him go to the toilet to empty the catheter.  Naturally, he was bruised and sore from the surgery.

Being Alan, he wanted me to take photographs for posterity of his catheter-enhanced body!

Catheter tubing attached to night-time urine collection bag and leg mesh
Alan’s leg ready for bed – Catheter tubing and collection bag in place

He was significantly afraid of the catheter removal process (he’d experienced an intensely painful removal in the past).  Fortunately, the tube came out without any pain – just a strange pulling sensation.  At least we didn’t need to worry about wrangling the catheter bag anymore.

Advice for Partners During This Phase

Probably best not to make fun of your partner – unless you know he won’t take it to heart!  He might look slightly comical with a tube coming out his willy, but he isn’t likely to enjoy any jokes at this point.

We did come across one partner who felt disgusted by her man’s penis after he developed an infection around the catheter.   She withdrew from any contact with his penis, even after it had fully healed and kept mentioning her distaste.  Her response was hardly helpful to him during such a painful time in his life.

Sympathy and empathy are useful at this point.  You might feel a bit like a nurse at times, but that’s okay.

It’s important to remember that your man’s scars are mainly internal.  On the outside, he might look quite normal, but the surgical wounds will still be healing inside him.  Men are generally advised to take things easy after surgery, as the following guidance from the Cancer Council suggests:

You can expect to return to usual activities 4–6 weeks after surgery for prostate cancer. Most men can start driving again within a couple of weeks, but heavy lifting should be avoided for six weeks.

Keep an eye on your partner’s mood during this time.  If he seems to be significantly down in the dumps, it may help for him to see a counsellor.  Make sure that you maintain affection and be as supportive as possible.

Encourage your husband to participate, gently, in the things he used to enjoy before his diagnosis – but make sure he doesn’t overdo things.

Alan is ex-RAAF (Air Force), so he loves aircraft.  The annual Air Show was on in Melbourne shortly after his catheter was removed and he was desperate to attend.  He and his good friend, Peter, went along and spent the entire day walking around checking out the planes and chatting with the vendors – they had a fabulous day, but Alan was utterly drained.  I seem to recall that he spent the following day recovering in bed.  He underestimated the fatigue factor and it knocked him around for several days.

Keep an eye on any physical symptoms that appear.  It’s not common, but some men can have problems with their pelvic lymph nodes after treatment.  If you or your partner notice anything unusual, don’t hesitate to get it checked out as soon as possible.  Better safe than sorry!

That’s it for Part One of this article.  In Part Two, I’ll discuss what to expect from the side-effects from prostate cancer treatment, and how you can manage them.

I hope you’ve found this article helpful.  If you have comments or questions, please do get in touch.  And please pass it on to anyone else who might find it useful.

Dealing with incontinence

When Fiona and I travel around Victoria to give talks about prostate cancer and men’s health, we often meet men who are dealing with incontinence.  They tend to be men who have already had treatment for prostate cancer – sometimes quite some time ago.  Clearly, ongoing “plumbing problems” are an issue out there in the community.

This article aims to explain what happens to your “plumbing” when you have prostate surgery, and what you might expect afterwards.  It also includes some helpful information and resources for those of you who might be finding it tough to get your leaks under control.

Before surgery – “Prehab”

Prior to surgery, men are often referred to a continence physiotherapist to learn techniques to control their pelvic floor muscles (PFM).  They may continue to see their continence physio after surgery to make sure that they maintain control of their pelvic floor muscles and regain continence.

You’ve heard of rehabilitation (rehab), but there’s also prehabilitation or “prehab”.  Actually, prehab is really important, and that’s why you are likely to get that continence physio referral.  The better prepared you are before surgery, the more likely you’ll bounce back afterwards with fewer problems.

Anatomy 101 – What is a “urinary sphincter”?

Urinary sphincters are muscles that act like valves.  Before prostate removal, a man has two of these little flow control devices.  The diagram below shows what a man’s anatomy looks like before his prostate is removed.

Diagram of male urinary tract showing internal and external sphincters
Image courtesy of Prostate Cancer Foundation Australia

You can see the internal urethral sphincter where the bladder and urethra join, called the bladder neck.  The external urethral sphincter sits below the prostate near the pelvic floor.

By opening and closing around the bladder neck and urethra, these two sphincters act together to control urine.  When the brain signals them to release urine, the sphincters relax to let the bladder empty.  At the same time, the muscles in the bladder tighten and squeeze urine out of the bladder.  When you’ve finished, the sphincters contract and close, while the bladder relaxes.

Your pelvic floor muscles also play a part in bladder control.  The floor of your pelvis is made up of muscle layers and tissues.  The layers stretch like a hammock from your tailbone at the back to your pubic bone in front.  Your pelvic floor muscles support both your bladder and bowel.  The urethra (urine tube) and rectum (back passage) pass through the pelvic floor muscles.

When your prostate is removed, unfortunately you will also lose your internal urethral sphincter.  The surgeon will rejoin the urethra to the bladder, leaving the external urethral sphincter to do all the flow control work.  Your great team of two sphincters is now a lonely single fellow, coping as well as possible under the circumstances!

What happens after surgery?

After prostate surgery, a catheter is inserted up the penis (yes, sounds painful).  We found the helpful diagram below to show where the catheter tubing goes.  Luckily, improved techniques and devices mean that there is usually no pain involved when the catheter is removed, roughly ten days or so after surgery.

Diagram showing pathway of catheter tubing inside male anatomy
Image courtesy of the Urology Care Foundation website.

For most men, there will be some level of incontinence after that catheter comes out.  Some men will regain full bladder control within six weeks or so after that, the lucky buggers.

Your continence physio will want you to focus on the area of pelvic floor muscles (PFM) involving your poor old mate, the external urethral sphincter.  Now you are in the rehab phase of PFM training.  It’s so important that you retrain the muscles, so you can regain control of your bladder.

Most continence physiotherapists say that the two year post-surgery mark is when most men will have reached a plateau with their level of continence.  What is important is that you do your PFM exercises daily to make sure you get a level of control over your PFM and urethra.

Why might I still have the dribbles (or worse)?

Of course, there will be men who never reach a level of control that they are happy with.  They will end up using pads every day, which can be costly, frustrating, and interfere with travel.  They may also experience leaking when they get an erection, or during orgasm or arousal – this is called climacturia.

Our colleague, Victoria Cullen, has a great website and YouTube channel.  For those men who experience climacturia, she has interviewed Dr Jo Milios on the subject and you may find that video helpful.

When you find yourself getting up more than once a night for a pee, that is called nocturia.  If you rule out other potential causes, such as drinking too much late at night, including coffee and alcohol, this may mean that you have a problem with your bladder.

The opposite from this is that some men may become continent very soon after surgery, which may include not going that often to empty their bladder.  In fact, they may have urine retention problems.  So it’s important to consult either your continence physiotherapist or a urology nurse to make sure that there aren’t any bladder issues.

What have I experienced?

I will say that, nine years after surgery, I’m about 99 per cent continent.  I do my PFM exercises most days, but still have the occasional leak, for whatever reason.  I still need to get up most nights for a trip to the toilet.  Again, there are several things which will contribute to that, like how tired I am, how much fluid I’ve had after dinner, and whether I have done my PFM exercises.

I still see a continence physio, when I need to get anything checked out.  My pelvic floor muscles occasionally get too tight (in other words, I need to work on relaxing them properly) – this means that the muscles can tire and just give way later in the day, leading to dribbles.

If I’m still leaking, what can I do?

Of course, anybody can experience incontinence (bladder and bowel), for any number of reasons, but there is a lot of information available about how to deal with this, along with products and surgery, if all else fails.

The bottom line is that you do not have to put up with incontinence – there is help available!

Excellent information website

The Continence Foundation Australia, which has been around for 30 years, is an outstanding source for anyone having continence problems.  They offer free information on bladder and bowel health on their website and, if you’d rather talk to someone, they run a National Continence Helpline:

The National Continence Helpline is a free telephone advisory service staffed by a team of continence nurse advisors who provide information, education and advice to callers with bladder and or bowel problems which may include incontinence, constipation, failure of bladder to empty or who are caring for someone with such conditions.

The Helpline also provides information and advice to health professionals.

The Helpline is funded by the Australian Government Department of Health and available to anyone living in Australia. It operates 8am-8pm (AEST) Monday to Friday.

The Helpline number is 1800 33 00 66.  The Foundation runs resource centres in NSW, SA, VIC, and WA.  They also have a regular magazine called Bridge, which you can read online or get a free hard copy posted to you.  Their information covers men, women, children and those with disabilities.

Continence products in Australia

Firstly, if you are about to have surgery to remove your prostate, you will wake up with a catheter, as explained above.  When you are about to have your catheter taken out, make sure you have a continence pad to wear inside your jocks.  In most cases when the catheter is removed, you won’t even realise that you’re leaking, so it’s really important to have the pads with you.  Some clinics may supply you with a pad when your catheter comes out, but it’s best to be prepared.

The major brands of men’s continence pads (and women’s) are sold in most supermarkets, Chemist Warehouse and at pharmacies.  Prices will vary and you may find some on special.  If you feel embarrassed about buying them in person, you can order directly from the following websites:

Independence Australia has offices in each state or you can contact them on 1300 788 855.  They sell a range of pads and related continence products, with deliveries to your home. You can also order a sample pack, with a maximum of three different pad types (two pads per pad type).  If you are a Veteran and are covered by the Department of Veterans’ Affairs for prostate cancer, they will cover the costs for these products, but you will require a script from your GP, urologist or urology nurse.

They have an extensive listing of products, including swimwear and different schemes to assist with the purchase of products and these are all listed on the website.  They are also involved with the Federal Government’s CAPS (Continence Aids Payment Scheme), if you have permanent and severe incontinence.  There are also the various State Government schemes that you can access, usually via their Department of Health or Human Services.

DependCare has a range of continence products for men and women, with insert pads and men’s pull-up type briefs with a built-in pad liner.  Their free call number is 1800 028 334.  You can obtain samples of their pads for men as well.

BrightSky is a company with a large range of pads and supporting products for dealing with incontinence.  They offer pads, pull-ups or an all-in-one product.  You can order their product guide by calling 1300 886 602

Modibodi is an Australian company that has recently brought out a men’s brief and a boxer style with a built-in pad.  These are washable and will hold about a couple of teaspoons of urine.  So, if you’re travelling and you don’t want to carry lots of pads, these can be an alternative.

Pjama is a Swedish brand which has recently launched in Australia.  Their “bedwetting pjama”

looks like an ordinary pyjama, but it has the ability to absorb the urine after an accident. The bed will be kept dry so there is no need for protective sheets or changing bed linen in the middle of the night. The urine stays in the pants/shorts, so you can feel calm and safe. Pjama is easily washed and is an eco-friendly alternative to the many disposable products that are available on the market today.

Recent feedback that they received from a customer in Broken Hill was that “they were brilliant, for adults absolutely waterproof, no leakage at all”.

Tena Healthcare carries a large range of products. It’s worthwhile looking around their consumer website as it has lots of useful information, including help for carers coping with incontinence.  Discreet delivery to your home is available, if you don’t want to buy from a shop.  Their freecall number (within Australia) is 1800 623 347.  

Conni is another Australian company that sells a range of products, including men’s washable and re-useable underwear, either briefs or boxer styles.  Their contact number is 1300 721 170.  

I just want my leaking to stop

If it’s 12 months or more since your surgery and you are still leaking up to 250 mls of urine most days, and PFM exercises have not managed to improve your continence, it may be time to consider surgery.

You can talk to your urologist about fitting a device, either surgically or externally.  There are clamps that can be used externally – they are applied to your penis, and you release them when you feel the urge to have a pee.

There are different devices that can be surgically fitted inside you.  The following information is from the website of a local reconstructive urologist (who specialises in addressing continence problems):

Surgery is an option for stress or overflow incontinence.  There are surgical options for mild to moderate incontinence, and heavy incontinence.

These include a male ‘sling’, a device surgically inserted to support the bladder and urethra.  There is also an “artificial urinary sphincter” which is a device designed to act like your own natural urethral sphincter.  It controls the exit of urine from your bladder to your urethra using a pump located in the scrotum.

Deciding on the right way to resolve your particular continence problems will require a discussion with either your existing urologist or one that specialises in the fitting of these devices.  It will usually be determined by the degree of leakage you are experiencing, as well as other health factors.

We hope that you’ve found this article helpful and, if you have, please do pass it on to anyone you know who might also find it of use.

Also, if you have any questions, please don’t hesitate to contact us.

Close-up of robotic prostate surgery

Nerve sparing during prostate surgery

Diagram showing nerves to prostate gland
Nerve bundles around prostate gland
Nerve sparing or non-nerve sparing?

As you can see from the wonderful diagram above, the prostate gland is in a very inconvenient position when it comes to removal.  Getting that gland out without utterly destroying those precious nerve bundles is a seriously tricky task.  Nerve sparing refers to the technique designed to protect and preserve the fine network of blood vessels and nerves that runs along both sides of the prostate.

Surgery to remove the prostate is called a prostatectomy.  I had one of these in 2011.  Getting my penis back in action has been a work in progress ever since.

Naturally, if you want to get an erection, you need the help of those nerves around your penis.  That’s where the question of nerve sparing comes in.

Steps along the way to recovery

I refer to my nerves tingling as a sign that there’s some response down below.  In the early days and months that followed losing my prostate, there was no tingling at all.  We did discover that men can have an orgasm without an erection.  This happened a couple of weeks after my catheter came out and it was totally unexpected.

First there was Viagra …

Using Viagra created interesting erections, with Percy not fully erect and sort of like an uncooked sausage. The orgasms that came with penetrative sex were painful in the early days and the nerves were more than tingling.  Thankfully, these painful orgasms eventually backed off over the next twelve months.

I discovered, when I was practising my pelvic floor muscle exercises, that I could activate my pelvic muscles to increase the nerve response.  Unfortunately, that came with more than nerve tingling – it felt like my pelvic floor was stinging.  I must admit, I probably wanted to hurry along the orgasm (not a good idea).  This was even more pronounced with oral sex.  As Fiona said, I needed to relax and enjoy the moment and not focus on the end.

Then came the needle …

When Viagra didn’t seem to work so well, I was prescribed an injectable medication called Trimix. This time, the orgasms felt more like they used to before my surgery, without the sting.  Rewarding myself with a chocolate after giving Percy his jab helps to get over the needle heebie jeebies.

Don’t forget to reconnect your brain

A vital part of penis rehab, in my experience, is to get the old brain-to-penis pathway working again.  Use your mind to imagine sexually arousing things.  This should send signals to the nerves below and hopefully leads to some response from Percy.  With practise, I found that the nerves started tingling, which has increased over the years, along with my erections.  It always feels good to see Percy rising to the occasion!

Of course, all this depends on what you and your partner really value in your post-surgery life together.  You may want to remain sexually intimate, or that part of your relationship may no longer be so important to you.  Whatever choice you make, working on your penile rehab and getting those nerves tingling is still critical to keep your penis healthy.

Back to the nerve sparing info

In a series of recent videos, Professor Declan Murphy (urologist with Peter MacCallum Cancer Centre) chats with Victoria Cullen (A Touchy Subject) about nerve sparing, non-nerve sparing and advances in nerve grafting procedures.

Prostate Cancer Support Groups – What are they good for?

What do I have in common with Ben Stiller, Sam Newman and Wayne Swan? We have all had prostate cancer.

Four men who have had prostate cancer. Alan White, Ben Stiller, Sam Newman and Wayne Swan.
I’m the best looking, right?

I wonder whether Ben, Sam and Wayne knew about Prostate Cancer Support Groups.

For around ten years, I have been the Convenor for the Bayside-Kingston Prostate Cancer Support Group. So, you could say that I know a little bit about the pros and cons of support groups.

Who attends Support Groups and why do they come along?

In my experience, men come to Prostate Cancer Support Groups (PCSGs) for a variety of reasons – seeking information, support and education about their condition.

Not all men who attend PCSGs have prostate cancer. Blokes come along with prostate-related issues like enlarged prostates, prostatitis, Peyronies disease, etc. Sometimes men come to the group after they’ve had a “re-bore”, or if they are undertaking Active Surveillance. They want to hear how others have dealt with these problems.

Some groups have partners attend, as they are also affected by the diagnosis, and can feel left out of the treatment decision-making process. Partners often find relief in speaking with others as well.

A diagnosis of prostate cancer impacts not just the man with the condition, but his relationships, his emotions, his physical and mental state.

Prostate Cancer Support Groups also invite guest speakers and presenters to attend the meetings. These guest presenters talk about the work they do, or bring the group up-to-date with relevant information about current treatments. This keeps the men in the loop about what is happening in the research world, and how it might impact on some of them who may face a recurrence of their cancer.

At our group, we have had men come along who are on their own or looking after elderly parents, so they don’t have the backup and support they need. The group can provide that emotional support, which is so vital after a prostate cancer diagnosis. Research shows that some men who are on their own can face an increased risk of suicide after diagnosis.

Members of Bairnsdale Prostate Cancer Support Group.
Some members of the Bairnsdale Prostate Cancer Support Group in October 2018

Some men who want to know how a support group functions will ring the local group convenor and talk about their diagnosis. Often, I have found that men want to meet up, face to face, and talk about what’s going on for them. Sometimes these men bring their partner along as well, as both of them have so many concerns and questions to ask.

Most men are fixers, so they attend a group to hear how other men have dealt with their problems. They ask questions, have an opportunity to talk to others and then they move on. For some blokes, groups are not their thing, which is fine.

For other men, a group provides a sense of belonging, reducing their feelings of loneliness and isolation. Within these groups, men receive and give support and encouragement. They also get to hear about tips from others who are facing similar issues.

Group Strengths

The following quotes are from some of the men who attend my local PCSG.

The monthly meetings are an opportunity to help others overcome stressful events.

Friendship, support and assistance with navigating the sea of information out there.

A friendly ear in a time of need.

There is a sense of shared experiences and everyone is equal.

To be able to speak freely about your concerns. No matter how you think you’re going, there is always someone who’s doing it tougher – like a member who’s in palliative care and facing the end of his life!

The gallows humour helps lighten things up without taking away from the serious side of meetings.  And the meeting brings men together for a common cause.

How can I find a Prostate Cancer Support Group near me?

Men are not always told about support groups, for whatever reason. In my opinion, it is vital that men are informed about PCSGs – it’s then up to them whether or not they want to contact their local group.

For some men who are still working, the fact that many groups meet during the day might be a barrier to attending. Fortunately, there are some groups that do meet in the evening.

The best way to find your nearest Prostate Cancer Support Group is to check the Prostate Cancer Foundation Australia (PCFA) website. You just click on the map of Australia and then on the state you live in. A list of all the PCSGs in that state will show up and you can then locate a group nearby. It’s also helpful to check out the information on the PCFA site about prostate cancer.

Click on this image to go to PCFA’s list of support groups

Within our group, there are men who have been involved since its creation more than ten years ago. They find the support and friendship is really important to their health and wellbeing. They also feel that they are contributing to the group’s success, which gives them a sense of purpose in their lives, no matter where they are in their cancer journey.

September is Prostate Cancer Awareness Month

It’s a great time to spread the word about getting checked. If you know any men who’ve been diagnosed with prostate cancer, let them know there are others out there who are also dealing it. Tell them that there’s a support group out there which can help them deal with their diagnosis and treatment process.

Spreading the NAVIGATE word

Visiting Government House

Fiona and I were fortunate to attend Victoria’s Government House as part of the 70th anniversary celebrations for the Peter MacCallum Cancer Centre.

We were really excited to meet Her Excellency, the Governor, Linda Dessau. We grabbed the chance to tell her about the NAVIGATE trial for men with low-risk prostate cancer. The Governor was kind enough to let us bend her ear on the subject and even have a photo taken with her.

Alan White with Victorian Governor, Linda Dessau, and Fiona White
Victoria’s Governor, Her Excellency Linda Dessau, with Alan White and Fiona White.

Men’s Sheds in Victoria

I have been doubly lucky on the social engagement front recently, because I also attended a Government House function last week in honour of the Men’s Shed movement in Victoria. It was great to see so many men (and their partners) receive acknowledgement for their support of this state’s Men’s Sheds.

9th Annual Victorian Healthcare Week Expo

On Tuesday, I attended the 9th Annual Victorian Healthcare Week Expo as a presenter. My presentation of Wounding the Soul was part of the patient experience stream. This talk addresses the profound emotional, physical and mental impact of prostate cancer surgery on men and their partners. I also took the chance to stress the importance of the NAVIGATE trial for men who have recently been diagnosed with low-risk prostate cancer.

Associate Professor Munjed Al Muderis delivered a presentation on his current work with amputees. It was great to meet him. We spoke briefly about prostate cancer and he kindly allowed me to have a photo taken with him. I find him and his work so inspiring.

Alan White with Associate Professor Munjed Al Muderis at the 9th Victorian HealthCare Week, 23 July 2019
Alan White with Associate Professor Munjed Al Muderis.

Is your partner interested in sex?

Could menopause be the problem?

If you’ve had treatment for prostate cancer, you probably know it can be hard to get hard (or stay hard).

Assuming that you want to have sex, what do you do if your partner isn’t interested? If your partner is female, perhaps her reluctance has something to do with menopause (or perimenopause).

My wife, Fiona, has gone through menopause. You may have watched her interview with Victoria Cullen about sex after prostate cancer. Anyway, she has just finished reading a new book about menopause which she really loved. I’ve included Fiona’s book review below.

Me & My Menopausal Vagina
By Jane Lewis (PAL Books)

What a wonderful book!  Thank goodness for Jane Lewis girding her menopausal loins and writing such an enlightening expose about vaginal atrophy.

Why do we need this book?  Everyone probably knows about the hot flushes and the dry vagina, right?  Well, it’s not until you actually reach “the change” yourself that you discover the not-so-lovely truth.  Slathering on some extra lubricant before sex just won’t necessarily cut the mustard.

Facing sex after your partner has been treated for prostate cancer can be challenging to start with.  Add menopause (or perimenopause, the start of the whole journey) to your existing challenges and sex gets a whole lot trickier.

Vaginal atrophy – ouch

I bought this book because I now suffer from vaginal atrophy (VA) and that causes me pain when I have sex with my husband.  Even when I use a lot of lubricant and he is very gentle, my vagina struggles to open as it used to.  It hurts and I really want to fix the problem – we both want to keep having penetrative sex.

Jane’s book is really funny (yes, really) and has some great illustrations.  Best of all, Jane is really frank, honest and she has been there.  Nothing beats information from someone who has actually experienced their subject first-hand.  The book is like a user manual for women and covers everything from basic anatomy to laser treatments, moisturisers, physiotherapists and HRT.

This book is easy to read and gives lots of helpful advice.  Naturally, one size never fits all, so Jane’s suggestions offer avenues to explore.

I recommend this book to all women and many men.  Reading about the effects of menopause may help some couples to understand why their sex life has gone off the boil.

You can purchase Me & My Menopausal Vagina from the Pelvic Floor Exercise website for AU$24, which is where I bought my copy.

Alternatively, the book is available (in paperback or as a Kindle edition) from Amazon.

If you’d like to find out more about the book and the author, check out Jane’s website.

Awardee Alan White, with Professor Penny Schofield (L) and Natalie Richards (R)

Volunteer Awards 2019 – A win for NAVIGATE

Victorian Public Health Volunteer Awards

An exciting event happened last Friday afternoon at the MCG. I was sitting in the Members’ Dining Room with 250 other volunteers and their families. It was wet and windy outside as the Victorian Minister for Health, Jenny Mikakos, presented the 2019 Local Health Volunteer Awards.

Outstanding Achievement by a Volunteer: Improving Public Healthcare

The NAVIGATE team, Professor Penny Schofield (Principal Investigator) and Natalie Richards (Project Manager), were there to see me receive the Award for Outstanding Achievement by a Volunteer: Improving Public Healthcare. Oh, and my wife was there too. I’m not sure who was the most excited!

NAVIGATE team at MCG for Victorian Local Health Volunteer Awards 2019
(L to R) Professor Penny Schofield, Alan White, and Natalie Richards.

Overall, six categories of volunteer achievement were recognised. I felt privileged to have been nominated in the first place, let alone to go on and receive the final Award for my category. It was great to see the number of entries and the outstanding quality of the volunteers who were nominated from across Victoria.

Why did I win?

My Award recognised the last seven years that I have spent working with the NAVIGATE. I have been with the team from its very inception to its current status – clinical trial phase. NAVIGATE is now actively recruiting participants to become involved with the trial, which I believe will lead to a game-changing tool for men diagnosed with low-risk prostate cancer.

https://youtu.be/OqDPxxb6wzY

Special thanks to Natalie Richards for her PR video (above) – you can certainly see the excitement and enthusiasm of our team! And congratulations to all the other volunteers who were nominated for this year’s Awards. Public health in Victoria is all the better for their involvement.

Man and woman embracing with happy smiles

What about my partner?

How do partners experience sex and intimacy after prostate cancer treatment?

Following surgical removal of the prostate gland, men and their partners experience a “new normal”.  Firstly, they need to deal with urinary incontinence, which can last from a short period of time to a considerably longer period of time (how long is a piece of string?).  Anyone want to see a photo of me in my big undies? (JOKE)

The next major journey of mutual discovery involves sex.  Intimacy and sex change after a man undergoes a prostatectomy.  Gone are the days of reliable erections on-demand!  Also gone is the semen – from now on, any orgasms will be a dry affair.

So far, so straightforward.  I have already discussed in several past posts (and in my book) how prostate cancer treatment can affect a man, on all levels.  It is not so common, however, to hear from a partner about their experience of a relationship post-treatment.

Last night, Victoria Cullen ran a live webinar featuring my own wife, Fiona.  In that webinar, which lasted for only 30 minutes, Victoria gave Fiona the opportunity to talk about the challenges she faced since 2011 when we “lost my prostate, mate”.

Man and woman embracing with happy smiles
Image courtesy of Justin Leijon

Life before prostate cancer treatment

As some of you may know, I married Fiona in 2008.  When my final prostate cancer diagnosis was made in January 2011, we were approaching our third wedding anniversary.  We had a happy and healthy sex life, which both of us enjoyed a great deal.  Now and again, my penis had its wobbles – as men get older, it is common for them to experience difficulty getting an erection and keeping it.  Overall, things were quite rosy.

Along came prostate cancer – and then …

Life changed dramatically – for both of us.  Rather than repeat Fiona’s story, you may wish to view the webinar on YouTube.  Just be aware that the contents are for adults only.

All I will say here is that menopause added another layer of difficulty to our sex life.  Don’t be dejected though, because there is definitely a future for sex and intimacy, in spite of all life’s little challenges.

Courtesy of Victoria Cullen and A Touchy Subject

Webinar: Adjusting to the new normal

Free Webinar

This coming Wednesday (3rd of April), I will be the guest on a live webinar broadcast by Victoria Cullen, Sexual Function Specialist.

Victoria Cullen talking about life after prostate cancer surgery
Victoria Cullen, Sexual Function Specialist

The webinar will start at 7:00pm (AEDT) and you can register to watch (or participate) via the link below.

Button to register for free webinar on life after prostate cancer surgery

Victoria and I will be discussing life after prostate cancer surgery, ranging across issues such as:-

  • the physical, emotional and psychological impacts of surgery;
  • how prostate cancer surgery can affect relationships;
  • sex and intimacy after prostate cancer surgery;
  • incontinence and erectile dysfunction.

The webinar is free and we would love you to join us with your questions and comments.  You can, of course, just sit back and watch without joining in – it’s all up to you.

If you’d like to check out our promo video on YouTube, click on the link below.

Check out the promo video on YouTube

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