It’s been a busy month, this little olde month of May. It started with my birthday, which was very nice. I didn’t do much, which is what I wanted. I did however eat and drink lots of the food and drinks that I shouldn’t. I was going to take this to the line. We gained a new King and bank holiday, I spoke to some peeps about prostate cancer, a group of professors have nothing better to do then come out with some nonsense reports, I got some new tattoos, finished a college course and the month will end with me being irradiated like a pack of dried fruit. Oh and a little announcement.

I had my first two peer to peer clients from Prostate Cancer UK. These are men or family members who ring up and ask to speak to someone who has undergone a particular treatment for prostate cancer. We then ring then via this service that masks our personal phone number and we are not meant to give out personal details.

The first guy, lets call him Aaron, had been given a choice of radiation therapy or prostatectomy. Now this was a numbers guy. I suspected he was either an accountant or worked with data. He had all the figures and even knew the cubic capacity of his prostate. His dilemma was he has an older brother in another country that also has prostate cancer, but he opted for hormone treatment and brachytherapy.  Brachytherapy is where radioactive ‘seeds’ are embedded into the prostate and kill the cancerous cells. His brother suffered zero side effects and has become an evangelist for the procedure. Aaron also spoke to his brother’s consultant, who warned him that he should avoid going under the knife at all costs. Aaron’s consultant over here is telling him the complete opposite of course. He will recover well if he just has it removed.

All of that and his own deduction that his prostate is on the large size so brachytherapy, even though not offered, would also work well. He then added that he was aware that a lengthy delay does not work in his favour. All I could tell him was that he had to take his brother out of the equation as there is too much emotion there. Also, his brother had only had the procedure six months ago so his success was still very fresh. I told him my PSA was undetectable for a year before it started to creep back up.

We spoke for an hour. I couldn’t say he was leaning one way or another. He was still ‘running the numbers’, with the different choices. It was strange not giving someone I had spoken to my contact details, but this was what was suggested. I said I would call him back at the end of the month.

The second client was a total contrast to the first.

Barry, had been given three options: prostatectomy, active surveillance or radiation & hormone therapy. His query was not just the procedure but specifically what effect he could expect on his sex life. He has a PSA of only 4 but he has a family history of cancer – his mum had breast cancer and grandmother had liver cancer. He also had a biopsy and only 3 of the 11 cores were cancerous but he had a Gleason of 7 (3+4). That is the same as I had. He mentioned that he had to fight initially to even get a PSA test in the first place as his doctor was reluctant to give him one.

Well, that got the temperature in the room to rise.

I told him that I couldn’t give him any information about radiation and hormone therapy but he could contact Prostate Cancer UK and they can match him with someone who can. I told him what he could expect if he had the prostatectomy with regards to his sex life. He had done his research so nothing really surprised him.  

He had been advised, by his doctor, that he should go with active surveillance and have another PSA check in August, his last one was in March. He indicated that this was his preferred option. I said that he should at least have another PSA done ASAP so he can see if it has risen since March and by how much.  

Two press articles really got my blood boiling this month. They are from well educated professionals who just seem to be removed from common sense. I really have no other way of putting it. They propose major changes to prostate cancer treatment and without realising – until this very minute of writing this blog – it is as the article says, already being implemented. It looks like Barry, who I recently spoke to, could have been one of the first to be given this option.

The first article suggests that too many men are being given prostate cancer treatment when they could have lived with it instead and died of something else. What do they propose to do? Well to cut the figure of 50,000 men being diagnosed with prostate cancer every year in the UK lets reclassify the earliest stage tumours as ‘pre-cancer’ instead. With the stigma and mental anguish of the word ‘cancer’ removed these men will be offered ‘active surveillance’ or ‘watchful waiting’ instead.

By jove, this is simply brilliant! This is game changing. These experts practically have noble peace prizes already in their hands, we just need to engrave their names into them.

Bravo, pat some backs and vigorously shake some hands.

I end my prostate cancer awareness talks with a simple takeaway.

1. In the early stages of prostate cancer there are usually no symptoms
2. The earlier you treat prostate cancer the better the outcome
3. You cannot prevent prostate cancer. You are either going to get it or you are not. You have to be proactive rather than reactive. Get tested.

So just to be clear. Let’s take the third biggest killer of men worldwide and lets just toss a coin and hope it does not spread. If it does, the man is potentially now in a worse position then he was at the early stages. This could mean the treatment required is more extensive and of course this will correlate to his quality of life afterwards. It’s a fact that men recover better from treatments, the younger they are. They follow up by adding that this should only be suggested for men with a Gleason score of 6 but it still concerns me.

The second report, published in the British Medical Journal, is even better in the worse possible way.

Let’s scrap the PSA test on demand altogether! They should now be available only via a urologist for men with urinary symptoms.

They even went on to allude that when there is a surge in demand for tests after a celebrity has died of the disease, the guys that are likely to die from prostate cancer are not the ones asking for the test.

You could not make this up!

The logic behind this is that it could lead to unnecessary treatment as the prostate cancer risk is higher for men over 70, the younger men may have been better off remaining undiagnosed and untreated. They went on to suggest that screening should be introduced instead for men aged 50 – 70 (we already know that will never happen).

The cancer centre sits adjacent to the main building of Guys hospital. It is a relatively new, shiny building in direct contrast to its older brother. Depending on your level of cynicism it’s either quite a contemporary building with its smooth exposed concrete walls or they ran out of loot during construction. I have visited the building a couple of times before when recording the videos for the prostate cancer MRI scanning precautions during Covid. 

You enter the building and there are two small desks either side of the entrance. On one side sat  some old girl giving out masks while complaining she didn’t had sanitiser and on the other side a young woman interrupting a text message to direct you. The lift only goes up two floors to the main radiation wing and if you want any other floor you have to jump into another set of lifts on the opposite side of the floor. I know it’s probably not likely but think that they started out with a two-story building and then someone came along with a crayon and drew another 3 floors on the architecture drawing. 

The woman at the reception took my name and pointed to a bank of seats for me to sit in. Now this was in complete contrast to my other second hospital home across the road. A fraction of the seating capacity, magazines on the tables and Heart FM radio being piped out from hidden speakers. The only thing missing was a muffin stand and hot face towels. It was only a few minutes before a nurse came over and gave me a measuring jug with a specific amount of water and a cup. I was to drink it and not go to the toilet in the meantime. I was called into a room by a doctor. The doctor introduced herself and asked me to confirm who I was. She then showed me the document that I signed authorising the start of radiotherapy and asked me to confirm that was what I read and my signature. Then I had to explain why I believed I was here and my version of what I thought was going to happen.

Do people ever turn up here and not know they are about to get zapped?

Once that was all done, she explained what was going to happen. Today’s appointment was the easy one. All that was going to happen was they were going to check my bladder retention. Having a full bladder would move the lower intestine out of the way of the beam. On the next appointment they would measure me up on the CT machine and they would permanently tattoo a trio of points on me. This ensures they hit the same position every time. Did I have any questions?

I didn’t think of it at the time of my last appointment, but since then, I did have a question that I couldn’t get a definitive answer to.

“What will happen to my nerves? After the operation, they managed to save both sets of them during the prostatectomy.”

“That’s a good question. Well, we know what the radiation tolerance for your nerves are, let’s say they are 10. We then set the level to 8 so we are within its tolerance. Cells when they are subjected to radiation are damaged but can repair themselves. Cancer cells do not have this ability.”

Well, I didn’t know that. Very informative. I only hope that the technician in charge is better at maths than the technician who measured the length of my catheter tube.

“We just need to check your water retention. Were you given a drink?” I answered yes and she said she would get back to me in about twenty minutes and they would do a scan on my bladder. With that I sat back outside in the waiting area. Twenty minutes later I was taken through a door to the changing room, where I changed into a hospital gown and then into another room for the ultrasound.

“The grease will be a little cold” The nurse warned me.

My last experience with their hospital grease was when I had the ‘two for one’ digital rectal examination, all of those years ago. A bit of a chill was hardly going to trouble me. I was a hard nut now.

“Oh dear, your bladder has less than half of the water you just drunk. You are dehydrated. Do you drink at least two litres of water a day?” She asked.

Well, my name is not ‘billy the whale’ and diet coke does not come out of any kitchen tap that I know.

“No”, I answered.

“You are going to need to drink at least 2 litres a day, not including tea or coffee”

Yes, prison warden marm.

“OK, I can do that”

I did indeed diligently start a 2 litre a day water habit. A week later, I was in exactly the same position. This time however, the two nurses in the room after performing the ultrasound, had a short debate.

“We have a problem now as your bladder is too full and we need you to get rid of some. About a cup’s worth.” Then he handed me a cup.

One cup later and we were ready to start. I climbed onto the CT machine and we were good to go.

As the laser beams were criss crossing me, the experts shouted out and confirmed to one another.

“E2”

“B3”

“C4”

And a few others. Then one of the nurses came over and said they were just going to make a tattoo mark and I would feel a small scratch. Now, over my interesting prostate cancer journey I have had probably hundreds of injections. I also have two tattoo’s. A jaguar on my chest and my name in Chinese writing on my right shoulder. Both of them about 3 inches in length. This wasn’t a pin prick or a scratch. This was a stab with either a rusty nail or a mini pitchfork. The bloody thing hurt. One down two more to go. Not happy.

Then that was it. I have my radiation schedule, its starts on the 31^st May. Go forth and stay hydrated.

Oh and I nearly forgot, the announcement….

More details to follow……