Wednesday, 13 November 2013
What better time than Movember to raise awareness of prostate cancer?
A slightly different version of today's post also appears in the Guardian's online Society section.
I remember the moment with utter clarity. Where I was sitting, what I was doing, and what I was looking at. My consultant had called with the results of my third biopsy. It was positive. They had found 3 cancers in the prostate.
This had been a long journey and I should have been prepared; but I wasn't. Of course, I had been one of those people who always said that "cancer" shouldn't be such a dangerous topic that we don't talk about it. The reality is we all know of people who have died of cancer and despite all the many advances in research it still is a major killer.
Despite all the actual evidence of my own case it was difficult not becoming morbid; thinking of the music for one's Requiem (Faure or Mozart?)for example . However, my partner soon put paid to such nonsense when I got home, and what better occasion than to remember the advice of Churchill as I opened a bottle of fine champagne; "in victory we deserve it, in defeat we need it".
I had decided to have a PSA test, which detects the possibility of prostate cancer, back in January last year. I was surprised when I was asked in to see my Doctor to be told the reading was over 18 – far higher than would normally be expected for my age. So, I was referred immediately to the Churchill hospital in Oxford for tests, and thus began seven months of scans and biopsies. Biopsies are not great fun and the final one was under general anaesthetic.
The problem for me was that whilst the PSA results were very high, and climbing, they couldn't locate any tumours. When they did, they were quite small. There is a problem with the current state of medical knowledge on this particular cancer, it is thought that most men in their 80’s will have prostate cancer, but the majority will never have symptoms and not die of it. Yet every year some 10,000 men do die.
The medical advice was less than clear-cut on my own diagnosis and so for three months I convinced myself that I could keep this under surveillance and avoid treatment. The main forms are to have the prostate cut out or eight weeks of radiotherapy, the side effects (not to be detailed in a family blog) can be serious for ones quality of life.
In the end, I organised a second opinion. I had the Oxford Prof's view so I went to see his opposite number in Cambridge, Prof Neal. He is currently undertaking a research project to trial new improved PSA tests. I think it was this chat that finally moved me to deciding I would have treatment. Amusingly my decision was rather confirmed at a Health Service Journal dinner when I found myself sitting next to Norman Williams, the President of the Royal College of Surgeons. Doctors and consultants are rightly guarded at telling you what decisions you should make on your own health but having outlined my own dilemma he said if he was in a similar position he would probably go for treatment. It was reassuring and helpful Norman.
In my case I was fortunate to be in the category of people who can have brachytherapy, a relatively recent treatment imported from the States. So on April 29th this year I was admitted to the Royal Berkshire at Reading and in a three-hour operation, I had 66 radioactive seeds (flown in from the States no less) inserted into my prostate. I was lucky to have an understanding Board at ACEVO who agreed to me taking a two month "sabbatical" to recover. I was not then ready to be very open about my cancer.
So, its 6 months on. I'm still radioactive; if you are pregnant or a baby you should not sit on my lap, but otherwise feel free. I have off days, but the good news is that the cancers have been zapped. My PSA is back to normal and It has not spread.
Why speak up now ? I can look back at the experience with more detachment and I feel confident in talking about it, and what better time than the start of "Movember ", when Prostate CancerUK and the Movember Foundation work to raise awareness of this disease. I spoke to Owen Sharp, Prostate Cancer UK CEO and ACEVO member who was keen I talk about it as they need men to be more aware of the problem. So, hence this Blog.
The journey has been difficult. Looking back, I can remember the dark days. Somehow, this thing lurked in the back of my mind. Looking too much at all the stuff on the internet did not help. I'd go to bed thinking the worst. I suspect having a strong sense of humour and sense of purpose kept me strong. Being the third sector's leading voice made me more determined not to falter or retreat in the face of this new obstacle.
It is at times like this you realise how important the NHS is. The quality and standard of care for cancer patients is superb. The advice and support I got at the Churchill, especially from the Prof Hambdy, my consultant, and Rose Southby, and the cancer nurse, was an important part of my recovery journey and its good to be able to publicly thank them here. .
We should also not forget the crucial work of the cancer charities. I had lots of help from both Prostate Cancer UK and Ciaran Devan at Macmillan Cancer Care and his team. The work they do on research, campaigning and support for people with cancer makes all the difference, and the amount of research now going on into new and more effective forms of treatment for prostate cancer is breath taking in its scope. However, more needs to be done and so fundraising is crucial in this historically underfunded area.
So "Movember" is an important movement. This emerged as an idea from two friends chatting in a bar in Melbourne in 2003. They decided to grow a moustache to draw attention to the need for more research, and they devised rules for growing a “mo" to raise awareness of prostate cancer, rules still extant today.
This month this movement wants to raise millions to continue to fund the expansion of research and services for prostate cancer through their major UK partner Prostate Cancer UK. This is now a global health movement, with over 1 million people in 21 countries taking part. This deserves support, although I'm afraid I'm not growing a moustache I am telling my story. I remember a friend who had had cancer ( a leading third sector CEO ) telling me I'd one day be surprised when I discovered that I had moved from being anxious to being simply matter of fact about it all.
And the wider lesson? Well, if I had reached 60 and even though there were no symptoms, I would be going to the doctor to talk about having a PSA test. Especially if a new test which could serve as a more accurate indicator had been rolled out.
The other lesson is to be prepared for any result. Both Macmillan and Prostate Cancer UK have a lot of literature its worth reading before a test. I'm glad I had the test, and the treatment because now it’s sorted. I know they never tell you it’s "cured” and it will be checked but I'm confident. I celebrated my 61st birthday on Tuesday (fireworks kindly laid on for me by Lambeth Council in Brockwell Park) I will be celebrating many more.