Rob’s Story about Prostate Cancer - December 2020

Firstly I have to stress that everyone is different and despite what you read here and in the other members’ stories, your journey will almost certainly differ from ours.

My PSA was at 4.2 when my GP first thought that I might have an issue with my prostate. He just did a blood test and included PSA in the list. He decided to put me on Tamsulosin (muscle relaxant for enlarged prostate sufferers to help with passing water). He also decided to refer me to the urology specialists because my Dad had died from prostate cancer. I asked if I could be referred to Haywards Heath which is part of the Brighton and Sussex University Hospital Trust (Princess Royal Hospital – PRH).

March 2015 -  I had my first Urology consultation where they undertook a Digital Rectal Examination (finger up the back-end) to check the prostate by feeling for irregularities. Nothing was found but they said to come back in 3 months. I then had 3 subsequent appointments with the Urology specialists over the next 12 months. My PSA was gradually rising over that period and reached 6.8

April 2016 - the Urology team sent me for an MRI scan which showed a dark area on the left side of my prostate. That was followed by a guided biopsy in May 2015 where they took about 20 samples based on the MRI findings.

June 2016 – I was told that the dark area in my prostate was cancer and they also told me that it was still within the gland (‘capsule’ as they call it). They also said that it wasn’t too aggressive - that’s the Gleason Score – mine was 4 / 3. I was given the usual 3 options of removal of the prostate, brachytherapy or hormone treatment. I opted for removal of the prostate (Radical Prostatectomy).

June 2016 – I went into Eastbourne Hospital for the surgery under Steven Garnett and was released home the next day with a catheter and 5 small wounds on my tummy area. The catheter was in for 10 days.

July 2016 – I attended PRH for a TWOC (Trial WithOut Catheter), basically to check that when the catheter is taken out you can still pass water OK. I was fine – in fact when the catheter came out I couldn’t hold myself at all – I was incontinent and they gave me some large nappy-like underwear to get home. I was very depressed about the incontinence and it took me about 2 months to get to the point where I was able to do normal things without passing water all the time. Pelvic Floor Exercises are what help to regain control of the bladder and I got the hang of it eventually after asking many different professionals how to do them properly – nobody really knew the answer !

August 2016 – I had my 1st post-op meeting with Steven Garnett where he told me that everything went well and the cancer had been removed with the prostate. He asked me to come back in 8 weeks and have a PSA test before-hand. During this time I had got control of the incontinence and everything was good.

September 2016 – I had my 2nd post-op meeting where my PSA was undetectable (less than 0.01) – that was good news.

For the next 3 years I was having regular PSA tests and consultations with the Urology team in PRH, everything seemed fine and I was just getting on with life.

May 2019 – I had one of my regular Urology visits to PRH but my PSA had gone to 0.1 which was a really big blow to my confidence. I couldn’t understand why that had happened, but they told me it can happen and often does. Having the prostate removed is no guarantee that the cancer won’t come back – now they tell me !!!

I was in a very low place mentally after that meeting and I really retreated from the world and let everything slide. I had no thoughts other than ‘I’m going to die’, that’s all I could think about every day. I was put onto anti-depressants (which I have had many times before) and Valium to calm me down. I was losing weight rapidly and despite needing to eat I just didn’t bother.

September 2019 – I was referred to Angus Robinson at the Sussex Cancer Centre with a PSA of 0.25. Angus was very kind to me – he knew that I was suffering from GAD (Generalised Anxiety Disorder) so he explained my options in a simple way – do nothing, have hormone treatment or take radiotherapy. I opted for radiotherapy.

October 2019 – I had my Planning CT scan – where they make sure you’re fully prepared for the radiotherapy (empty bowel, full bladder) then they put you into the CT machine and then make 3 permanent dots on your abdomen to help alignment for the radiotherapy (tattoos). Also at this meeting I was given my dates and times for the radiotherapy – 33 sessions over 6 ½ weeks.

By this time my mood was lifting somewhat because at least I was being dealt with and I knew from internet research that radiotherapy was very effective.

November 2019 – I attended the Radiotherapy centre in Preston Park.  They were wonderful kind people and I was among fellow sufferers, a lot of whom were far worse-off than I was. After a few weeks the daily routine became a simple thing and I knew all the names of all the staff at the centre so it was like a little family…. I also (luckily for me) met Brian Holden who was undergoing 23 sessions and he was scheduled just after me each day so we met and talked every morning. Meeting Brian was a revelation to me – here’s someone who’s going through this ordeal for the 2nd time but
he’s so motivated and doing many normal things including cycling, going on holiday, sailing, walking , etc…

I was ashamed of myself and determined that I should try to have the same attitude as Brian. I started walking the dog again and I went back to my normal hobbies and pastimes… I felt so much better about things generally – it’s called Living Well with Cancer.

December 2019 – My last radiotherapy session finished on Xmas eve and I was so pleased to be able to have time to recover. The radiotherapy does give some side-effects, apart from the daily enemas which we have to give ourselves (these cause back passage spasms and are quite uncomfortable) there are known effects from the radio-beam itself. It wasn’t too long before I was able to get back to normal and I was feeling great about everything.

February 2020 – I had a PSA test and a follow-up consultation with Angus Robinson – my PSA was still going up !! That was unexpected, but by now I was fully into the Living Well with Cancer lifestyle and I took the news very well. The plan was to send me for a Choline PET scan to see what’s going on.

May 2020 – the PET scan showed that I had 2 secondary cancers but they were small and easily controllable with treatment. Angus Robinson recommended that I go straight onto hormone therapy which I did through my GP. I started with a month of Bicalutamide and after 1 week of that I was given an injection of Zoladex concurrently which lasts for 3 months.

September 2020 – I had a PSA test and a follow-up call from Angus Robinson – my PSA was down to 0.03 which was fantastic ( I had a PSA test at my GP just before-hand and that said less than 0.01) both were good news.

Dec 2020 – Brings us up-to-date. My latest PSA reading is 0.01 which I’m assured is as low as can be expected, so I’m happy. There are some side effects from the Zoladex but they’re not really a big problem.

Since I met Brian Holden and another guy called Brian (who was also undergoing radiotherapy at the same time as us), we have formed a friendship based on our mutual experience of cancer and our love of cycling. We go out on our bikes regularly (weather and other commitments permitting) , we usually meet somewhere convenient to us all and have a great time just talking to each other and have something to eat and a good laugh. I have also taken up rowing (indoors) again and am trying to do that every day, but I don’t always feel like doing it – (so I don’t).
What have I learnt through this 6 year period?

Don’t let a diagnosis of cancer get you down – 1st time I was diagnosed I took it well, but 2nd time wasn’t so good for me mentally. Big mistake.
Whatever happens during your treatment remember that the professionals are trying their best to make you better – they are dedicated and caring.
Join a support group (if you like that sort of thing) because when you meet people in a similar situation to yourself it’s like belonging to a club – everyone has the same interest and all want the same outcome….

Don’t wallow in self-pity because those negative emotions will have a detrimental effect on your condition and those people around you. I’ve tried it and it doesn’t do any good !!

More to come in the future I suspect ……………….

Rob Stanley