Skip to Accessibility Tools Skip to Content Skip to Footer
A portrait of the author with men running behind him

Movember Community Spotlight: Tony

For Movember, ProstateCancer.net is highlighting community perspectives on men’s health awareness. We spoke with community member Tony about his late diagnosis, his advocacy efforts and what he wishes for other men.

Within 36 hours I went from training for an ultra-marathon to terminally ill. On 4th June 2017 I was due to run the Comrades ultra in South Africa. At the start of April 2017 I ran Manchester and Paris marathons a week apart as training runs but by the end of April my “groin strain” was seriously hampering my training so I booked in to see a sports injury Doctor and a pre-arranged MRI on 8th May. A cortisone injection would surely clear it up in 5 weeks and off I’d go to South Africa.

End of life as I knew it

The Doctor saw the scan and was immediately so concerned that he sent me for a chest X-ray, blood tests, the first time I’d ever heard of a PSA test even though I didn’t know what that meant, and the following day a CT scan. The Doctor phoned me at 8.00pm on 9th May to tell me that he thought I had Prostate Cancer. 10 days of additional tests, bone scan, biopsies etc. and it was confirmed. Gleason 5 + 4, PSA 129 with widespread mets throughout the skeleton and a worst case prognosis of two years.

9th May 2017 was the end of life as we knew it. It still feels like we are living in a parallel universe. How can you be ultra-fit one minute and terminally ill the next? The next few months were unbearably tough physically but more so, mentally. The thoughts about not seeing my 4 year old Grandson become a teenager or walk my Daughter down the aisle were simply devastating.

Had cancer for 10 years

The groin strain turned out to be stress fractures of the pelvis where the cancer had eaten into the bone and my running had led to the fractures. Alarmingly, had I not been a runner I probably wouldn’t have known about the cancer until much later and my health would be in a far worse state. Even more alarmingly they believe I’d had the cancer for 10 years and I’d had no symptoms whatsoever. During that 10 years I’d run 19 marathons between ages 50 & 59 plus one ultra-marathon.

I was incredibly shocked to discover that if I’d had a PSA test every year from age 50 the cancer would most probably have been diagnosed early and I could have had curative treatment. How can this possibly be? No screening at all? Really?

Learning to run again

By November 2017 I had started running again but my treatment (Prostap 3 monthly androgen depravation therapy couple with Abiraterone, a new drug tested through the STAMPEDE trial) meant that I now had no testosterone which made all aspects of day to day living a real challenge. Total emasculation as a man and annihilation of athletic ability but at least I’m still here and can still run.

I needed to hear from another runner living with terminal prostate cancer what the impact was likely to be and, via Prostate Cancer UK, I was introduced to Kev Webber. Kev was still doing ultra-marathons and amazing awareness work for Prostate Cancer UK.

The advocacy begins

Kev made me realize that there was so much I could still do but, most importantly, we could both do work to avoid other men ending up like us. I decided to become an ambassador and volunteer for Prostate Cancer UK. This led to 3 TV appearances in 2018 plus radio interviews and my family becoming the faces of Prostate Cancer UK’s Xmas 2018 appeal.

During 2018 I spoke to over 2600 people doing speeches at major events as well as awareness talks in running clubs and peoples workplaces that I called “Running Into Cancer”. They have been very well received and I am aware of at least 4 men who’ve had early diagnosis and curative treatment as a result.

I strongly advocate men asking for PSA tests and am vocal about GP’s refusing them which I think is a total disgrace. We all know that the PSA test is not a diagnostic tool but it’s currently the only thing that can lead to early diagnosis and no man should be refused the test because of GP’s ignorance.

Thankfully I remain stable and well. PSA not registered for 24 months but that may all change any time in the future.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ProstateCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • jnickulas
    2 months ago

    Thank you for sharing your story & commitment to raising awareness of early testing & the importance of PSA. 💙

  • fhall4au
    2 months ago

    Thanks for sharing. I’m stage 4, Gleason 10, mets to distant lymph nodes and bone-spinal column. Dx Feb 2016. Tough journey and I sometimes feel like I’m a walking time bomb. When’s it coming back and where? Next treatment? Already had chemo, ongoing ADT, Lupron, and 86 IMRT radiation treatments. And, mine recurred with PSA of .01. Tricky. I’m a mentor with Imerman Angels and spread the word for early, and regular PSA tests. I appreciate the good work you’re doing!

  • Richard Faust moderator
    2 months ago

    Hi fhal4au. Thank you for the kind words. Looks like you are the one we should be thankful for. After the road you have been down, it is so great that you are advocating and mentoring. I was not previously familiar with Imerman Angels. It looks like they (and you through them) do some truly impressive and inspiring work. Hoping you can keep the PCa beast at bay. Please feel free, if you like, to keep us posted on how you are doing. Best, Richard (ProstateCancer.net Team)

  • Richard Faust moderator
    2 months ago

    Hi Tony. Glad to hear the PSA is down. Thanks for all you do for PCa awareness. Such great news about the four men who got an early diagnosis – this may only be the four you know of.

    I’m right there with you about doctors who don’t want to do the PSA. It amounts to not trusting patients to not trusting patients with information about their own health. When I had a physical this year, shortly after I turned 50, the doctor didn’t want to do the test and only acquiesced after I convinced him of my knowledge of the test and its limitations. For this and other reasons he will not be doing my physical next year.

    Wishing you the best and many good runs ahead. Richard (ProstateCancer.net Team)

  • Poll