The following story has been provided by Neil Topping, one of our fantastic volunteers for our Central Region Lighthouse Club. Neil has been a volunteer Wellbeing Visitor for our charity for 27 years and when he learned of us focussing on raising awareness about Prostate Cancer he immediately offered to share his own journey from diagnosis to recovery,
Neil’s Journey
The story of my diagnosis begins 20 years before that fateful day in November 2015 when I was told that I had the condition.
My in laws lived in Scotland and my father in law, Eric underwent an operation in 1992. We weren’t really aware of the seriousness of the situation at the time, because he lived over 400 miles away and it was a sensitive subject. So it took a year or two before we learned of his diagnosis. After spending time with him in the years that followed the operation, it was clear that he was struggling. My wife Heather and I assumed that the cancer had probably spread to other parts of his body prior to his diagnosis and that these had remained and spread further after his prostate operation. Sadly Eric passed away just 3 years later in 1995. However, almost his last words from his hospital bed to my brother-in-law and to me were, “Get yourselves checked regularly”.
By getting checked he meant having regular PSA blood tests. PSA stands for prostate specific antigen. It’s not a perfect test and as far as I’m aware there is no national screening programme, but I get the impression that more GPs are inclined to do the blood test if you are over fifty and in a higher risk category even if you don’t have any ‘bladder problems‘.
What are these higher risk categories? 1 in 8 white men get prostate cancer. If you are of an Afro Caribbean background, the risk is 1 in 4. You are at greater risk if there is history of the condition in your family and you are at higher risk if your mother or sister has had breast or ovarian cancer. My mother died from breast cancer.
Following my father in law’s ‘instruction’ I began to have regular PSA tests. I was fifty when Eric died and I had tests done every two or three years until I was sixty and then I increased them to every year. I had no obvious symptoms such as having to visit the WC several times throughout the night and my PSA level was around 4.5 to 5, normal for my age. However, in 2015 as I approached my sixty ninth birthday, I was called back to the surgery to see my GP. The number was now just over 7. He examined me and noted that my prostate was enlarged , but was relaxed about it and quite apologetic when he said that the NICE guidelines meant that I had to be referred to the Churchill Hospital in Oxford. This is one of the leading cancer hospitals in the UK. I duly saw the consultant within a couple of weeks, more tests were done and there was further internal examination. The consultant repeated what the GP had said. ‘Nothing to worry about at the moment. We just need to monitor things.’ I subsequently learnt from other men having treatment that their PSA figures were 60 plus! No wonder the consultant and the GP were relatively relaxed about my figure which was just over 7. However, the consultant then came out with probably one of the most important things ever said to me! ‘If you want real peace of mind, you could always have a biopsy’. He explained how this would be carried out. It didn’t seem like fun, but it was at this moment when all my previous test results proved their importance. My latest PSA result was higher than it had ever been. Something was going on. I decided to have the biopsy, it wasn’t as unpleasant as I expected and it was probably one of the best decisions that I have ever made.
A couple of weeks later, I was contacted by the hospital to see a surgeon who would ‘explain my results to me’. As we were fearing the worst, my wife Heather came with me and we were told that cancer had been discovered in both sides of my prostate and it was medium aggressive. The good news was that it hadn’t spread. The surgeon then explained how the operation would be undertaken, the exercises that I would need to do afterwards and the possible long term side effects. One thing that I learnt that day is that if there are treatment options available, the consultant will often only discuss his speciality and not the alternatives. Therefore, I turned the question around. I said that after my father in law’s experience, in the event that I was diagnosed with prostate cancer, I would opt for hormone and radio therapy, but if he, the surgeon, advised that it would be a greater risk to my life I would consider surgery. He told me that both options in my case would be equally effective and before he finished the sentence, he was tapping away on his computer organising my appointment with the oncologist.
There are other forms of treatment, one of which is brachytherapy which involves inserting radioactive seeds into the cancer. Again, there are possible side effects with this. I was not offered this option, and as I recall, it was because of the particular medication that I was taking.
About two weeks after seeing the surgeon, Heather and I saw the oncologist who explained that the procedure involved 6 months of hormone treatment and half way through this period, there would be 37 weekday radio therapy sessions. None of this came as a surprise to me. By 2015, I had been a Lighthouse Club Welfare Visitor for 20 years which helped me learn about other people’s illnesses and treatment! The hormone treatment that started almost immediately prevented the cancer from growing further and the radio therapy destroys it. I elected to have a 6 month implant rather than monthly jabs. If I felt unwell as some men are, I didn’t want the option of stopping the treatment.
Two lessons that I learnt at the time. The oncologist said that he always worried when he saw a patient on their own during the initial consultation because it was likely that they would be unable to absorb all the information and they have no one to refer to afterwards, The second lesson is not to keep things to yourself. Tell your family and close friends about your diagnosis and the treatment so if your mood changes or you behave differently, they will know why. Also if you are involved with organisations or wok, let them know so they understand what is happening and can support you.
In the case of the Lighthouse Club, I advised the welfare manager that my visits would be limited to afternoons or in some cases, another visitor might be needed. Once you’ve told male relatives and friends that you are having hormone treatment, it’s amazing how often they look at your chest! Having started my treatment just before Christmas, jokes about possible Christmas presents were limitless!
So, how did the treatment go? As far the radiotherapy was concerned. I had no side effects other than feeling tired for a few hours after I returned home. No burning sensations or soreness
Various tattoo markers were used to target the radiotherapy before the treatment started. Before each session I had to consume large quantities of water and retain this until the session was completed which was a problem for some men for obvious reasons. The most unpleasant part was the pre ession enema which you had to do for yourself in the hospital. A certain camaraderie developed amongst the men being treated as we were all receiving treatment at the same time every day. Those who has been receiving treatment for some weeks passed on their experiences to the new comers. One joker had been supplied with 40 enema kits before his treatment started and suggested that he was going to sell the 3 extra ones on eBay!
There was one odd side effect of the hormone treatment. My eyes became very dry and I was referred to the Oxford Eye Hospital who immediately prescribed various eye drops and one particular prescription I still use today. A very small price to pay.
So, what happened after the treatment was finished? I had quarterly blood tests and consultations. These then became every six months and I was finally formally discharged by the hospital in November 2018, three years after the original diagnosis and two and a half years after the treatment finished. I now have blood tests every six months at the local GP practice and I monitor the results through the NHS App. My PSA reading has remained at about 1 for the past seven years. Before the treatment it was just over 7 up from the 5 that it had been for years. The trigger for closer monitoring now is 2 and if it gets to 4 then there is possible further clinical intervention such as hormone treatment.
I resumed normal life a few months after the treatment ended. This included the welfare visits for a further four years until covid intervened in early 2020. I remain a committee member for the Central branch.
What I’ve described in this ‘story’ relates to my experience over 7 years ago. As in many fields of medicine, progress is constantly being made in the detection and treatment of prostate cancer. Whilst writing this piece, I’ve read about a new blood test based around the PSA test, but incorporating a new method that looks at changes in the immune cells and initial tests indicate that it’s over 90% accurate in detecting prostate cancer.
When people ask me how I feel following the treatment, I respond by saying that your body can be compared with a car! You don’t realise how its condition had deteriorated until you get a new one!
This story highlights the importance of getting tested regularly and the positive outcome of early treatment. If you are in a high-risk group and or you are over fifty, don’t take no for answer if your GP won’t undertake a blood test even if you don’t have any bladder problems. About five years ago at a regional Lighthouse Club meeting I was chatting with one of the male attendees about my experience. A year later at the next meeting, he came over to me and said that our conversation had saved his life. He had no symptoms, but got tested as a result of our chat and had been diagnosed with advanced prostate cancer and the treatment had caught it just in time.
Finally, if you are diagnosed with prostate cancer, don’t suffer alone, let relatives and friends help support you through the treatment journey and on the road to recovery.
We’d like to say a huge thank you to Neil for sharing his very personal experience. Neil also shares his story and experiences with men’s groups to help raise awareness and encourage others to get tested regularly. So if you’re reading this and thinking “I should get tested”, or that your partner or husband should get tested then don’t delay, take action today.
