John Arthur's story

Here are excerpts from his diagnosis and treatment diary, told through his correspondence with Jim. John Arthur has kindly allowed us to reproduce this for the Viking Genes website and newsletter.  We have translated from the original Shetlandic to allow more people to read it.          

Date:  Fri, 21 Jun 2024 

Hi Jim, just thought I would give you a message to bring you up to speed with what happened after your trip up to Whalsay. I really enjoyed your talk as did most folk I spoke with after the night at the hall. It was quite amazing to see the huge difference in the gene pool even here in Shetland.

I actually went up to the doctor’s surgery the next day to see about other tests I might get done. After a blood test was done a couple of days later, the doctor phoned me the day before I came to Spain to say there was indeed a slight increase in my blood count to do with the prostate. He asked me a few questions about the water works and I said that I had seen a difference over the last year or so but I knew that could be expected with my age. I had intended to get an appointment to discuss the water works before, but after your meeting that gave me the push, I needed to do that.  

He said I shouldn’t worry too much but it was important I got another test to see what was happening. He said that I should come back in a couple of weeks for another test. I told him about me going to Spain for working at the boat and would be in Spain up to the 8th July at least. He said that would be fine, just come and get another test when I came back. So, I will be coming back home after the [boat] naming ceremony and get another test done to see what happens, and what might happen next. 

Date:   Fri, 25 Oct 2024 

I just thought I would update you on what’s happened since I last messaged. 

I ended up getting an MRI scan done after the raised blood tests showed some abnormal signs. There was no certainty with that test so I ended up getting a prostate biopsy. I waited nearly 5 weeks for the results and now they tell me that there are signs of cancer in the prostate. So, I’ll need to have a good chat with the doctor and the surgeon to see how we might go from here. 

The doctor spoke about the possibility of just keeping an eye on things with more tests in the future, he also suggested a new thing they are doing, a kind of surgery to remove the prostate, but as usual there can be side effects and to various degrees. I just got this news yesterday while we were fishing, he was good enough to give me some information on what to look up for the various options and treatments online. Hopefully I can get a good indication what might be the best option for my individual case. But I will need to find out as to what stage they actually think my cancer is at before I can make any rational decision on it.

Date:   Tues, 4 Feb 2025

Just an update on what’s happened since we messaged last.

After I found out about the cancer diagnosis I started looking into the different options for treatment. The earliest the NHS could do the operation was February, and it was in October that I got my diagnosis so I thought that I would look for other options, as the sooner I could get the cancer removed the better in my opinion.

When I had a chat with the consultant, he advised me to get another scan. During the chat, I told him about your Viking Genes work and how I had found out about the cancer due to the BRCA2 gene testing that had been done before.

A slot for a scan down in London was set up between Christmas and the new year, and on the 5th January, I went down to get another scan done. After the consultant and his associates had looked at the new scans, they could see that there was cancer on both sides of the prostate which couldn’t be seen properly with the Lerwick scan. With this new scan information, and with the new found BRCA2 gene information, they decided that the initially planned therapy would not be an option for me as there would be a greater chance of the cancer returning at a later date, due to the BRCA2 gene. 

So, they were recommending for a full removal of the prostate with the robotic prostatectomy with the nerve saving bit added in to try to give a better after operation results as far as side effects such as incontinence go. It was decided to go for an operation date at the end of January or early February. The consultant was not overly concerned to leave it until after we had finished fishing later in January.

I was hoping we could start the [fishing] season as soon as possible but you can never tell with that. As it happened, we got home on the 22nd January. As soon as I could, I contacted the secretary for the consultant and a date for the operation was set for the 1st February. So, there was a bit of fast flight organising to be done and accommodation for after the operation for recovery time.

I had the operation on Saturday and am currently still in the hospital, but I’m getting out this afternoon, and will be staying in London up until I get this temporary catheter taken out. Then hopefully we will be back to Shetland the middle of next week. 

Date:    Mon, 10 Feb 2025

Just a fast update. I got the catheter out on Friday and so far, so good with passing water. Bladder seems to be doing his thing.

I had my last meeting online with the surgeon tonight, he was very happy with how I was coming on with my recovery, and so am I. I would never have expected to be coming on as well as I am at this stage.

The results from the lab were as good as I could have wished for, there was no cancer outside the prostate and the lymph nodes they took out to test were clear of any signs of cancer.

There would be no further treatment required at this time. A great relief as you can well imagine. It’s been a rollercoaster this last few months that’s for sure, hopefully never to be repeated. 

And it’s all thanks to your study that this has all been done as fast as it has, or I would probably never have gone to the doctor about it until it was too late for anything to be done.

If you’d like to read more about this research, visit the link below.

Actionable genetic variants in 4,198 Scottish participants from the Orkney and Shetland founder populations and implementation of return of results