For partners of men with prostate cancer – Part One

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 of prostate cancer

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 born 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 with prostate cancer 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 offer advice on 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 puts the man in a good position to avoid dying from the disease.  The following information (from the Prostate Cancer Foundation Australia – PCFA) concludes:

95.6% of men diagnosed with prostate cancer will survive for at least five years and 91% will live more than 10 years.

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 to keep your cool.  It can be tempting to snap occasionally, but count to ten in your head and stay calm.

Sometimes I felt as if Alan was going around in circles – he continually blamed himself or questioned 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 both expected to get the usual all-clear outcome.  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.  If you fall apart, how will your partner feel?

This may be a time for you to take an occasional time-out for a cuppa with a close friend.  Keep your spirits up and stay positive.  Carer Gateway can be a helpful resource for you at this stage.

During the decision-making process

This is a very important time for you and your partner.

There’s a thing known as decisional regret which men can experience after they’ve undergone treatment.  It tends to be more common in men who don’t have enough information about their chosen 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.  Getting a second opinion before committing to a particular treatment 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 was reasonable knowledgeable 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 worth checking out at this stage in your prostate cancer journey – Dr Prem Rashid’s Your Guide to Prostate Cancer.

It’s so important for men to find out as much as possible about each of the treatment options available to them.  They need to know about side-effects, recovery period, costs 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 at this stage by listening to him.

Allow him to express his emotions so he doesn’t bottle them up to cause problems later.

If necessary, suggest that he speak with a counsellor or psychologist to help him get through this highly stressful period.

Make sure that he knows how much you love and care for him.

Resist the urge to tell him what to do and try not to lose your temper with him.  It will be better for both of you if you can keep yourself on an even keel.

If you possibly can, make sure that you attend your partner’s medical consultations.  Take a notepad (or make notes on your smart phone) so you will remember the important things that were discussed.

This is a great psychological support for your man and helps him feel that he isn’t forced to go it alone.  If you find something confusing or if you need 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. 

Make sure you stick to the high-quality, reputable medical websites so you don’t end up with the wrong advice.

The following sites are probably the best ones to start with:

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

There are also Prostate Cancer Support Groups around the country. He might find it helpful to contact the convenor 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 also meet up with couples for a relaxed chat over coffee so they can talk about their diagnosis and how they’re travelling.

Treatment time

This is the beginning of the next 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 from now on.

After Alan’s return from hospital, we had to deal with the immediate aftermath of his surgery.  There were tiny scars on his abdomen and a lovely tube coming out of his penis – the catheter.  Because it was difficult for Alan to bend over at first, 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!  I’ll spare you the images.

He was very frightened about the catheter removal process, based on an intensely painful removal experience in his past.  Luckily, the tube came out without any pain – just a strange pulling sensation.  Being catheter-free meant we didn’t need to worry about wrangling the catheter bag any more.

Advice for partners during this phase

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

We did meet 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 was fully healed, and she kept mentioning her distaste.  Her response was hardly helpful 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 your usual activities within about 6 weeks of the surgery. Usually you can start driving again in a couple of weeks, but heavy lifting should be avoided for 6 weeks.

Keep an eye on your partner’s mood during this time.  If he seems to be significantly down in the dumps, he might need 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 (Australian 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 both had a fabulous day, but Alan was completely drained.  I seem to recall that he spent the following day recovering in bed.  He didn’t anticipate the fatigue 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 of 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.

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