Every year over 50,000 men in the UK will be diagnosed with prostate, testicular or penile cancer. Of these men, over 47,000 will be diagnosed with prostate cancer, over 2,400 will be diagnosed with testicular cancer and over 630 will be diagnosed with penile cancer. Sadly, according to Cancer Research UK, these numbers are increasing.
Established in 1996 by testicular cancer patient Colin Osborne MBE and the oncologist who saved his life, Professor Tim Oliver, Orchid is the UK’s leading charity working on behalf of anyone affected by or interested in male cancer.
Chief executive Rebecca Porta first became involved with the charity some 15 years ago when she was looking at the potential role of cancer information nurses and has since led the charity in its work to offer support services and deliver education and awareness campaigns. Here, Rebecca talks about the charity’s latest report Prostate cancer: Britain’s growing problem.
We were not surprised by any of the information that came out, and it led to us making our recommendations. Alongside the launch of the report, we commissioned a survey into the awareness of prostate cancer. The level of people’s knowledge and poor understanding is what really surprised us. For example, 72 per cent of men weren’t aware that ethnicity played a role in prostate cancer and put them at greater risk.
The other thing the report did was to highlight the fact that more care is needed at home. You can travel some distance to have your surgery and treatment from an expert in the field – more people need to be cared for afterwards nearer to home.
Our big fear was that lots of patients were saying “my GP doesn’t understand what I have gone through”, or “they won’t understand my medical notes because the surgery I had in London is very complicated and I’m not sure my notes have made it back to my GP in Essex”.
They are all things that we know and we believe are happening, but once you actually ask those questions and see the data as it stands it’s really shocking.
It has been excellent; we were absolutely thrilled with the amount of coverage we got. The media picked up on four in 10 cases being diagnosed late. That got picked up on Monday morning by BBC News and then as we went through the week, Sky News, The Times and The Telegraph all picked it up.
One of the pieces of data that we released was that 42 per cent of prostate cancer patients had to see their GP twice before they were referred. Lots of patients came back and said “my husband was one of those cases. I couldn’t get him to go to the doctor or he went one or two times but kept coming home”.
On the one hand, it is great that we had all of this coverage out there and that so many people picked it up, but the downside was that we heard far too many cases and personal experiences from people. This is what we are obviously campaigning to have not happen. We want men to really be taking charge of their health and prostate health and going to their GP.
In recent years, what is really pleasing for me as a health campaigner and pharmacy patient is that now people recognise that pharmacy has a really big role and that you can go there in many cases before the GP. You can access your pharmacy easily, talk about concerns or worries and they will provide really solid advice.
If somebody comes in and talks about erectile dysfunction or bladder issues, pharmacy staff can be raising the question of prostate cancer, especially if that person falls into the bracket of one of the risk factors, such as age or family history. Just being an easily accessible, well-informed information point is so important.
We have been delivering a specific project with black African and Caribbean men across six London boroughs, giving out leaflets and POS items to people who are coming in. They have also put up our posters in pharmacy areas. There’s a great opportunity to identify who might fall into the risk categories, to have a conversation and to give them information.
What pharmacies could specifically do is if someone comes in and they have been diagnosed, act as an information point. Direct them to us or any of the other fantastic charities like Macmillan or Prostate Cancer UK.
I think pharmacies can really tell from their conversations whether patients have been struggling to digest information or may be a bit overwhelmed by their diagnosis. When someone comes in for their prescriptions, it’s always worth the staff asking how they are getting on and how are they feeling. If they say something’s changed, or they feel more lethargic then they can be directed to the GP.
I would like to think that in 10 years from now, we’d have a much better understanding of how the disease can be treated and managed and fully understand how it works.
I would also like to see some of the stats reduced. In particular, one of the things that we found [from our survey] is that one in three men said that they knew nothing about prostate cancer. I would like that to be completely different. I’d like it to be that 90-95 per cent of men know about prostate cancer, know the warning signs and symptoms and are very encouraged to go and see their GP.
To find out more about pancreatic cancer, read Raising awareness of prostate cancer.
If somebody comes in and talks about erectile dysfunction or bladder issues, pharmacy staff can be raising the question of prostate cancer