For Partners of Men with Prostate Cancer – What to Expect – Part 1

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 some 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 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 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!

Alan’s leg ready for bed – Catheter tubing and collection bag in place

He was significantly afraid of the catheter removal process, based on an intensely painful removal experience 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.