A Lanarkshire surgeon who was diagnosed with incurable prostate cancer is urging men to get tested for the disease.
Gareth Jones was diagnosed in June 2021 with an advanced form of the cancer and faced a struggle to maintain his health - both physical and emotional - to the best of his ability as he received palliative care.
The 55-year-old urologist, who lives in Cambuslang with his wife Carol, was a fitness fanatic prior to his diagnosis and spent years taking part in Iron Man challenges including swimming, biking and running.
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Gareth said: "Through lockdown, I did lots of virtual events and my last was the virtual Manchester marathon. I was a reasonable runner.
"I first noticed my foot was sore, and although that wasn't a new thing and I've been injured before, it wasn't going away.
"In early 2021, I jumped off my bike because someone walked in front of me and twisted my back - things that have happened before but I wasn't getting through it this time. My left leg also wasn't working properly and I was tripping a lot.
"I was going home from work one day and it took me twice the time and I had abdominal pain. I knew something was wrong."
Gareth initially went to his GP for blood tests before learning of his diagnosis while on call at work.
"I saw my GP at the beginning of June and we did blood tests," he said. "That Friday, I was on call at work for the next week, so I was going round the ward.
"At lunchtime I went to see my colleague and saw a field of red exclamation marks. It showed I had prostate cancer. She went to the diagnostic screen, and confirmed it. I then had to have a CT scan done that day, confirming that my spine and pelvis were full of cancer as well.
"On Monday I was in hospital for MRI scans, which was 90 minutes in the tube. Then I got the prostate biopsy and they gave me the first treatment, which was an injection to stop hormones getting produced.
"Because of my leg and the volume of cancer in back and hip they put me straight on radiotherapy. So I went to the Beatson the next week and got the scans to plan radiotherapy which would be happening five days a week.
"A few weeks later I saw the oncology doctor who decided it was best in addition to radiotherapy and injections that I go on some other pills to completely clear my body of any male hormone. Everything happened very quickly."
Gareth described the experience of being diagnosed as like being 'hit by a bus', saying he initially thought he would be dead within a year.
He said: "That day, it was really like being hit by a bus. I hadn’t dealt with men with prostate cancer beyond initial diagnosis in 20 years so all my knowledge as out of date.
"I thought with my blood tests I would be dead within a year, so that was not the best few months of my life. Then I started reading up on it and found out it maybe wasn’t as grim as I'd initially thought."
However, as time went on, the father of two saw a decline in his mental health and decided to seek help at Maggie's Glasgow before beginning to work alongside Prostate Cancer UK in a bid to encourage other men to test.
"The first year was okay; I felt okay and all my friends and colleagues were really supportive," Gareth explained. "But when you come up to the first anniversary, it’s well-known that people with cancer can have lots of mental health issues.
"With, prostate cancer, there’s a massive study that shows advanced prostate cancer have the highest symptoms of depression. I went through all that and then got covid which all resulted in a bit of depression.
"I reached out to Maggie’s where one of my friends did a lot of fundraising and had some very good sessions with the psychologist who helped. The main thoughts in my mind after all this was 'I don’t want anyone else to have to go through this'."
New data from the National Prostate Cancer Audit (NPCA) has shown that more than one in three (35%) men in Scotland are diagnosed with metastatic disease compared to just one in eight (12.5%) in London, prompting Gareth to beginning campaigning with Prostate Cancer UK.
He said: "On the Prostate Cancer UK, the website has links to support groups and I went to one - where I still go. Looking into the work they do to increase awareness throughout the UK and specifically Scotland, I thought maybe I should do some volunteering for them.
"At the moment, I am at the beginning of a journey of raising awareness. In Scotland 35% of men are diagnosed with metastatic prostate cancer - that is a terrible thing. I really want to push for awareness and for men, and for women as well.
"Men are always reticent to access health care and often present lately. Men like to put their head in the sand, but one in eight of us is going to have it.
"I just want every man who is 45 or more to know that they have a risk and that’s it’s easy to check the risk. The blood test is a blood test that is universally available.
"So many men are afraid of medical contact and the prostate exam but it’s not a big deal and it doesn’t have to be the first thing that’s done - you can get blood test.
"I know Prostate Cancer UK have put out guides to GPs and men. If it’s normal, you get it done in a few years. If it’s not normal or because of your family history, you may be referred for investigation early."
Speaking of maintaining his mental health and wellbeing in the wake of his diagnosis, Gareth said: "When you’re lying in bed with covid and you’d rather be dead, that makes you think 'I’ve got a wife, my mum, kids, I need to get out of this place'.
Gareth has also called for psychologists to be made key parts of care teams when creating treatment plans and urged for a more open-minded approach by patients to mental health care.
"In most healthcare specialities, you have a team of doctors and nurses," he said. "With cancer it’s surgeons and oncologists that deal with drugs at the end of the day. There are specialists as well and pharmacists and they all try and work together to get the best treatment for individual men or women.
"My thoughts are that there are a number of things that people are petrified about and mental health is one of them. I strongly feel given the data that front and centre of multi-disciplinary team should be a psychologist.
"If you’ve met one, you know they’re nice people that aren't going to immediately put you in mental hospital. The other team I think should have involvement is the palliative care team."
He continued: "Palliative care is not the same as end of life care only - really, it’s about giving the patient the best life they can have. If you’ve got pain, or psychological issues, these can be dealt with and you can live your best life.
"When I tell people I see a palliative care team, they look at me like I’m going to die. But I know what they do, and it’s only through my diagnosis and my pain that I’ve got to know these people and what they can do to make our lives better.
"The secondary cancer in my spine is painful - the radiotherapy gets rid of the pain to an extent but you will still have some and be sore getting out of bed. It can take hours to get going but there are things to be done about that with physiotherapy and drugs."
Despite living with prostate cancer, Gareth has not allowed it to stop him from exercising and committed himself to maintaining his fitness to the best of his abilities.
"I like exercising and it’s been a very important part of my life," he said. "When you’re started on injections to take away testosterone, you’re just tired. It sounds really paradoxical that going out and walking for an hour a day, or going to the gym, meeting people doing exercise, really does help with that fatigue. It helps with mental health as well.
"There’s a push for a thing called pre-habilitation before any surgeries but I would extend that to any cancer therapy because the fitter you are, the easier it is. There are a few anaesthetists in Glasgow working on getting people fitter physically and mentally.
"The mental health, the physical health, palliative care. But what I want people to do is get a letter form somebody or QR codes to get checked when you’re 50.
"If you’re a surgeon, you have to be analytical, since I can’t do surgery, I have to sort myself out and it can be applied to other men in my situation.
"You have to live the life, you can’t just exist. There’s no point otherwise.
"I can’t ride the bike for six hours like I used to. I was off for six months but I’m back on it now. You can’t go as fast or ride as long and because of the lack of testosterone you can’t recover quickly.
"At the moment, I’m doing a fundraiser for Prostate Cancer UK, which is to take a marathon in the month. I did it last year and I did 180 miles in the month. That was with swimming, cycling, and the rest was walking and running.
"This year, I’m not as fit as I was and I have lowered my goals so I’m aiming for 100 miles in the month."
Scottish data has shown an 18% fall in the total number of men who first started treatment for prostate cancer in Scotland in the first year of the pandemic, which could result in higher risk of metastatic diagnoses for years to come.
New analysis by Prostate Cancer UK also shows significant variation in how quickly different regions are recovering from the pandemic.
The latest treatment figures also show delays in treatment with more than half (57%) the men who need urgent prostate cancer treatment in Scotland waiting longer than two months for hospital care. Performance against the target of 95% is worse than any other cancer and has deteriorated during the past four years.
The data also highlighted significant variation within Scotland itself, with 93 per cent of patients in Ayrshire and Arran entering treatment in time, compared to just 20 per cent of patients in NHS Greater Glasgow and Clyde.
Prostate Cancer UK is encouraging men across the country to use its 30-second online risk checker to help them understand their risk and what they can do about it.
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