Dear Diary… A day in the life of someone with prostate cancer

Robbie was diagnosed with prostate cancer in 2018 and underwent surgery to remove his prostate. Since then, he has experienced incontinence and loss of sexual function. This is his story.

NAME: Robbie
FAMILY: Wife, three grown children and 12 grandchildren
OCCUPATION: Retired earth mover
CONDITION: Prostate cancer
SYMPTOMS: Bladder incontinence and loss of sexual function
TREATMENT: Disposable pads

Diagnosis and surgery

When I was diagnosed with prostate cancer 8 years ago, I was told that it was a very aggressive cancer. Luckily it hadn’t spread and I didn’t need chemotherapy or radiation therapy, but I did need to have my prostate taken out as soon as possible. The surgeon said I might experience incontinence (leaking wee) after the surgery as well as loss of sexual function.

They asked if that was going to worry me. I said, "I've got three lovely children and my wife Mary and I can talk about it and if it's not going to be an issue, then we'll just move ahead." And it wasn't an issue. I miss it, but there's other things in life.

Daily life...

I’m retired and we live remotely, so my incontinence doesn’t really have a big effect on my daily life. I have to wear a pad, the smallest one that you can get, and have little leaks every now and again. There’s no warning when a leak is going to happen, but the cold weather makes it worse. In summertime, I go days without any leaks.

I keep relatively active. I might be lying underneath a tractor and get up and, bang, there the wee goes. It feels worse than it is, but it might only be a couple of drips.

Sometimes you aren’t lined up with a pad and then you feel the wee let go and you get a bit of a wet spot.

Or there might be a time when I think, ‘I'll have to be careful here because I've just twisted around.’

If I’m somewhere public and they look at me, my response to them is, "oh, yeah, that's a bit wet down there." I don’t let it worry me. If leakage is the biggest problem I’ve got, then I'm pretty happy.

Perspective...

For anybody who's had cancer, there's no guarantee that you’re always going to stay cancer-free. I'm very grateful that seven years down the track, I’m really, really good.

I think I've been a very fortunate person. It's not what you get in life, it's how you deal with it. I'm not saying that I haven't had a few days where I've thought, "I wish this didn't happen to me" but generally, every day's a good day.

As my wife Mary says, "the problem with you, Rob, is your glass is half empty, but you tell everyone it's half full." And I guess that's a bit true. Mary would say I'm very strong mentally, but my positive attitude has a lot to do with my very strong Christian faith.

I’ve learnt so much from getting prostate cancer and incontinence. You learn to be more tolerant. It gives you a broader horizon. There are other people a lot worse off.

I’m 77 years of age and without prostate surgery, I wouldn’t have had incontinence I don’t think. But without surgery, I might not be here. It’s just part of the deal for me. I’ve been able to manage it very well.

Camaraderie...

Prostate cancer is an insidious disease and it's killing so many good Australians. We've got to support each other. If you've got a really good, strong support partner, that makes life so much better. It's a joint effort to be able to get through it. Yes, the bloke gets the symptoms and has to put up with the treatment and perhaps incontinence, but often the partner is doing all the worrying and they're amazing for carrying that. Without a very loving support behind you, it wouldn't be as easy to deal with.

I’m a part of the Adelaide Hills Prostate Cancer Support Group. Having that connection and communication and knowing that somebody cares, can really help you feel a bit more positive. The group is a two-way street.

You go there because you're looking for support, but you also go there because you can support others. I get a lot out of it, but because Mary's the facilitator of the group, even if I wanted to stop going, I don't think I'd be allowed to.

"We're like a Men's Shed, but we don't have any tools. And we don't have any prostates."

You’ve got to take a light-hearted approach to all this. That is what gets you through.

For more information on prostate cancer or to find a support group near you visit bit.ly/pcfa_support.

What is prostate cancer?

Prostate cancer is Australia’s most commonly diagnosed cancer. According to Prostate Cancer Foundation Australia, it affects 1 in 5 men in their lifetime. However, if detected early, prostate cancer has a good survival rate, meaning screening is key. In its early stages, prostate cancer often has no symptoms at all.

When symptoms do occur, they are often related to the prostate pressing on the urethra (the tube that carries wee out of the body) and can include a frequent or urgent need to urinate, difficulty starting or stopping urination, a weak or interrupted urine stream, a feeling of not fully emptying the bladder, painful ejaculation, or blood in the urine or semen. Erectile dysfunction can also occur.

Many of these symptoms can also be caused by noncancerous conditions, such as an enlarged prostate. Prostate cancer is detected with a PSA (prostate-specific antigen) blood test or rectal exam and then confirmed with biopsies. Treatment methods vary, based on the individual person and the stage of prostate cancer. It may include active surveillance (regular monitoring with PSA blood tests, scans, biopsies and clinical review) to check it hasn’t progressed, radiotherapy, hormone therapy, chemotherapy or immunotherapy to target the cancer, or surgery to remove the prostate itself (prostatectomy).

As the muscle that controls the flow of wee (urethral sphincter) is close to the prostate, along with the nerves needed for erections, surgery to remove the prostate or radiotherapy to target the cancer may damage those areas resulting in temporary, long-lasting or permanent incontinence and/or loss of sexual function.

It is important to discuss urinary incontinence and sexual dysfunction with your surgeon as there are things which can be done to help preserve continence and sexual function. For example, some men are prescribed a low dose of erectile dysfunction medication (such as tadalafil or sildenafil) to help maintain blood flow to the penis and support nerve recovery.

A pelvic health physiotherapist can help prescribe pelvic floor exercises and low-impact activity that can improve post-surgery bladder control symptoms such as leaking wee. There are also male-specific continence products such as absorbent pads that can be a discreet and convenient option to give people the confidence to take part in activities they enjoy and increase quality of life.

Also in this edition: