Partner experience

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.

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.

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
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