‘Going to the toilet once during the night was first sign of my killer disease’

Prostate cancer symptoms shared by doctor on BBC Morning Live

Going to the toilet once during the night was Captain John Culling’s first symptom of aggressive prostate cancer.

In 2019, the 64-year-old from Dundee was on a skiing trip with the army when he began going to the toilet once during the night.

He said: “I put it down to having a few drinks in the bar each night. As it had stopped when I came home I thought no more about it.”

It wasn’t until going to the toilet during the night happened again while mountain climbing in June that the unit medic said he should get his prostate checked.

Captain John said: “Having seen my doctor immediately, I was provisionally diagnosed with prostate cancer about three days later.”

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On taking the call from his doctor to come into the surgery right away, he “fell to his knees in shock”.

Captain John continued: “I was diagnosed with an advanced and a very aggressive form of prostate cancer, which was a 5 left and 4 right on the Gleason score [a grading system commonly used for prostate cancer] so 9 out 10, my PSA was also up to 27.”

A PSA test is a blood test that measures the amount of prostate specific antigen (PSA) in your blood.

A raised PSA level may suggest you have a problem with your prostate – but not always cancer.

Captain John’s treatment entailed immediate hormone tablet treatment, followed by 90 day hormone injections for two years.

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He also had six rounds of chemotherapy, three weeks apart, and finally 20 fractions of radiotherapy, all of which shrank his prostate and the cancer.

At this point, Captain John was told he should get around three to four years before the cancer would return.

He explained: “I was never going to recover or be free of cancer, and indeed this spring into summer my PSA went up, so off I went round the hospitals getting more tests done again. This of course proved my cancer was back and had spread to one of my lymph nodes.

“There was a concern that it had spread to my liver too, but this turned out to be something to do with malaria I caught while serving in Africa.

“I am now back on hormone treatment for the rest of my life or until it stops working for me, at which point other treatments will need to be considered.”

Captain John’s diagnosis had a huge impact on his mental health: He said: “It got to the point where my suicidal thoughts became quite obsessive.”

He decided to get help from the charity Maggie’s where he began fortnightly sessions with Lesley, Maggie’s psychologist.

He said: “I found [Lesley] very, very helpful. I’m nos sure if I would have gotten through it without Lesley.”

Now, Captain John’s message to all men is to get to know your body and its workings, and if you see or feel a change, to get it checked by your doctor.

He said: “It’s most probably nothing serious but better to be safe than have your life potentially cut short.

“Also, the youngest man I have personally met with prostate cancer was 27. So I don’t think it’s an old man’s disease, it’s a killer at any age, don’t let it happen to you, get checked, it’s only a blood test.”

Maggie’s offers free support and advice to anyone living with cancer, their family and friends, find your nearest centre at www.maggies.org.

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