Hi there,

I’ve never shared online but here goes anyway.  In 2019 I was diagnosed with  high risk, LAPC, cT3a to be more specific. I wanted to thank Eddie for what he said about difficulties bringing out the best in others.  I was fortunate enough to be able to retire when I was 50yrs of age, I’m into my 10th year of retirement now. A few years before retiring I had suffered the loss of my bowel due to chronic diverticular disease after developing multiple episodes of acute peritonitis in 12 months & spending a lot of time in and out of hospital, before having this surgery.  Recovery, a bowel bag, then reversal were exhausting but like everyone in life, you muddle on and get through. The experience, while hugely interesting is a journey I certainly wouldn’t recommend. Anyway x5 years after retiring & x7 years following bowel surgery, I had developed x2 UTI’s with a year, unusual for a chap and this was the only symptom I had something wasn’t right. Toddling off to my GP’s, we found my PSA was 10 and rising. MRI scans showed bleak images of my prostate (I can read X rays and MRI’s which helps, but its been years since I worked in this arena). My problems started at the start of COVID in 2019 and I was dispatched to the urology team and seeing a young consultant surgeon. Sadly this gent was, arrogant and particularly hostile in most of my meetings. It was frustrating for me to deal with. After seeing my scans, I explained my understanding, asking to see the radiology summary to confirm. Mr surgeon refused to let me see the report because I’d had not had biopsies taken, despite me telling him it was within his remit to allow me to see this. He tried humiliation and embarrassment techniques when I asked further questions which was so ridiculous. He went so far as telling me, I wasn’t even a surgical candidate and I was too risky to operate on, due to past abdominal surgeries. Challenging him, I said he wasn’t being particularly kind. He simply said he could write a prescription for a comedian if I wanted to be cheered up! 

A rather bizarre experience given I had cT3a PC, I have to say. I did think he was doing a great job of being a comedian himself but we have all met difficult people in life. I’ve come across lots of Dr’s & Consultants in the past and can say most are not like this surgeon, thank goodness.  I don’t like to giving up and question everything. The rationale being, if you Q, you can understand, which helps to process and takes away a lot of worry especially where cancer is involved.  I am fortunate enough to have a very good understanding of anatomy and have seen almost every operation you can & I understand medical jargon which helps certainly helps. However for those who don’t, I would encourage anyone going through treatment to ask Q’s. Write them down b4 seeing specialists. They are so good, most of the time and cancer nurses are also amazing, so talk to them all, if you need to.  After several more visits back and forth from hostile surgeon to amazing radiologists, (all the time my cancer is increasing in size), I was sent elsewhere for brachytherapy even though I felt this was not the wisest option.  I was put on HT for several months and the side effects were ghastly, I have to say. 

When under pressure I often find humour in experiences. I reflect all the time and think deeply, mostly when cycling, which is my release. I like to read things and see what has been written before rushing into things. When hearing bad news you can often miss things so reading what has been discussed is much easier. I cycle daily (16+ miles most days), it helps me to stay sane as cancer thoughts often creeps into peoples heads at ridiculous times. Don’t misunderstand me, I get pretty fed up and feel down like most people, its totally normal, especially when you’ve been told you have cancer.  If I present as a bit morose or flippant, please forgive me as this is not intended.  I likened my cancer journey to being on a railway platform waiting for a certain train. I missed the surgical train several times because the driver (surgeon) was overconfident when in fact didn’t have the skills to take me on. The conventional EBRT train was driven by anxious radiologists but I missed several of these as well. Time was pressing on and after developing prostatitis while waiting for the brachytherapy train, I had to miss this train completely and avoid ever getting it even it was sent my way. Several trains down and I was running out of options. I stopped taking HT after all brachytherapy trains were cancelled for me. It was given initially to shrink the tumour prior to treatment, which is did by about 30%, however, side effects nearly destroyed me mentally & physically. I think that was the hardest part of all my treatments in all honesty. It works for some but not for me & I am not going back down this road, so to speak.

I wanted open surgery as this seemed the best and most logical approach, so a bit of researching helped me to ID a brilliant gifted surgeon from another health area. My own GP could not make any referrals due to the pandemic but its not hard to get appointments privately and after meeting a surgeon, he agreed to perform an open RP. He said this was my only available option for treatment but expressed huge worry, that I had been passed around then left because of COVID, given my grade of cancer. I had to pay privately because all cancer surgery in my health authority had stopped because of COVID but was thankful I had the means. This private surgeon was like father Christmas in a sense, and the polar opposite to the awkward consultant I was initially sent to see.  He had 30 years experience, was positive, incredibly understanding, exceptionally gifted and had operated on over 6000 prostate cancer patients in 7 years. He was attracting men from all over the world so I knew I was in safe hands. He is also only one of a few specialists who perform open surgery in the UK & I still muse at how I managed to find him.  Most new surgeons use robotic approaches believing you get better results. That isn’t always the case.  Yes, I was let down by the NHS but they couldn’t help Covid and I don’t feel any resentment toward the system. I did feel rather abandoned at the time but you get on. However, father Christmas surgeon dismissed concerns of difficult surgeon, regarding past abdominal surgery and risks and x3 weeks after my first consultation, using past MRI’s and biopsy results (from the NHS), I had surgery in 2020. For over a year, my PSA sat at .003ng which was a huge relief. However things started looking ominous in 2021 and a rising PSA from .003ng to 0.7, indicated my cancer had likely metastasised and was now spreading. I have come back into the NHS (different health area this time) and had a PET scan. Oddly this didn’t ID the cancer site, despite everyone being confident it would. For me this was the best news but a bit hard to process when x4 surgeons and x2 oncologists specifically told me not to get over confident, adding that I definitely still had cancer. I await a further PET scan in a few weeks time but my PSA is also much higher now. 

I’ve been told, they ‘will find the cancer’ & that it has most likely already spread to my lymphatic system.  I have also been told I cannot have EBRT at all, due to the previous bowel surgery. I wouldn’t want this in all honesty anyway. So for me it is now a long wait on the train platform. Specialists have muted HT as a potential option to slow PC’s progress, but given the long term effects to cardiac muscle and symptoms I had previously, I politely declined this option.  SABR radiation to bone may alleviate some symptoms and I’d give that a go, as its always an opportunity to learn something new and experience treatments plus it gives you the chance to share with others going through the same process using kindness and support. We all need a gentle words at times.  I do know in time, I will have to catch the last train that will eventually arrive to take me onward to a new journey none of my family will be able to join me on & this thought does pop into my head occasionally. I have to say since my cancer journey started, I am thankful in so many ways. I appreciate so much more now, I’m less concerned about things that used to bother me and have met so many lovely kind people. Oddly they seem to think I’m really positive. I wouldn’t say I am particularly optimistic, more a realist with a practical outlook on life are words I use. If something can be fixed, then fix it, if not, look at the options and take the best one.  I cannot change my circumstances but I can change the way I think. I will be in a bit of trouble within the next several years because specialists have gently warned me this is coming. Oncologists are the kindest people I have ever come across, aside from my beautiful caring wife, and they never give, so why should I in fairness.  I just wanted to say to others, be kind to yourself but above all talk to anyone if it helps you personally.  Cancer professionals, nurses, specialists & family are amazing. Don’t give up because if PC is ID’d early it is curative. I had literally no symptoms but just though maybe I should get things checked out.  My only concern is not being able to get out cycling, but until this time arrives, I will enjoy racing about in the country. I knew in 2019 my cancer was always high risk & it was hard to get my head round at first. However tea, keeping active and using humour have all helped and in some way I hope what I have said helps someone else who is new to the cancer journey, and wish them the very best outcomes. Many thanks for reading Andy.