Understanding Stage 3B Prostate Cancer: My Personal Experience

Alan Stage 3b Prostate Cancer Part 2 Treatment and side effects

Alan- Stage 3b Prostate cancer

We walked back to the car in silence. The journey from the hospital to home was about a 20 minute drive, yet it seemed to span only 5 minutes and I felt that I was running out of thinking time. I mentally wrestled with the idea of how to go about telling my son and daughter. I couldn’t make my mind up how to go about it, but I knew that I had to make hearing about it, not frightening.

I went to my daughter’s room first. She is the youngest of the two. I asked her to follow me into my son’s room where he was sitting on the bed. I looked at them both. “ I’ve been diagnosed with prostate cancer, late stage, it’s locally advanced, but curable”.  That suddenly sounded to me too harsh as I noticed my daughter’s lower lip quiver as she drew breath. My son said “ Well, that’s not ideal, is it?”   Then the three of us burst out laughing and do you know something? I had never felt more proud of them.

What I didn’t tell them was that my consultant had thought it necessary to start my treatment almost immediately. I received my diagnosis and was informed that a multi discipline team meeting (MDT) was to be held within the next couple of days. My treatment plan would be decided then. My consultant Mr P did assure me there and then however, that removal of my prostate would not be seriously considered because I had a comorbidity issue. There was a record of me having suffered a TIA (mini stroke) the year before. I had stenosis to my left vertebral artery caused by bone spurs on 2 neck vertebra pressing on it likely damage from old car crashes and resulting neck trauma, there was therefore a possible danger of post operative stroke, so no operation.

ADT does not mean that I was to be given Oestrogen. This is a common myth. The drugs used (and there are many different ones used in this form of therapy) are Testosterone suppressants. It was explained to me that the drug (in my case Decapeptyl) works on my pituitary gland which in turn tells my testicles to stop producing testosterone which can apparently feed the tumour. So testosterone production needs to be wiped out and ADT does that very effectively

A month or so later, I was given a schedule for my 21 radio therapy sessions. I was to undergo External Beam Radio Therapy (EBRT). This would be everyday for the best part of a month. I was given 4 blue dot tattoos. 1 above my navel just south of my ribcage, another just above my groin and a further one on each side of my abdomen. Those dots were to enable the machine to line up correctly so as to blast my tumour

I found RT to be quite relaxing. No worse than having an ordinary X-Ray. I felt no discomfort afterwards, although many guys do. All I felt was a burning sensation when I tried to have a pee for a couple of days afterwards and a great deal of fatigue. However, the great bonus of having to undergo R/T was the chance given to me to meet some wonderful, courageous people with all types of cancers and from all walks of life.

There was one guy whose story burned into me as effectively as the radiation.  On about day 15 of my treatment, I met this fella. His name was Phil. He looked very well. You wouldn’t believe that he had any serious disease. As we talked, I learned that he had tragically lost his daughter to cancer only two years before, a young mum, who had only been in her mid 30s. Now here he was, sitting in R/T reception, waiting for his name to be called.                                                                                        

The thing is, you get to see the same faces turning up day after day and you strike up friendships and get to know people. I mentioned to this guy that I was a little surprised that I hadn’t seen him before and asked was it his first day?  No, he said, it was his last day. They couldn’t do anymore for his stage 4 pancreatic cancer. These last few sessions of R/T were the final roll of the dice, buying time, just staving off the inevitable.  

They had missed his cancer time and time again. Originally treated for a peptic ulcer, it wasn’t until his 4^th visit to see a doctor until they suspected cancer. Referred and scanned, the 5th visit to see his doctor to receive the results saw him hear the news that it wasn’t cancer after all, just a very severe form of pancreatitis. A year later, with no improvement, his final trip to see the doctor saw him once again referred to a specialist, who told him  that, yes, he did indeed have pancreatic cancer, stage 4 matastatic. It was too late to do much about it.

But he held no bitterness towards a system which had let him down. As I looked at him, he kept smiling, calm, resigned. His courage was beyond belief.  When he was done after that day, he said, he would return to Sardinia where he and his wife had moored their boat (the couple had taken the decision to sell their house a few years before and to buy a boat and live in the Med) and where he lie on its deck in the sun and where would die within the next few weeks.  He was called in before me and I couldn’t say goodbye. The finality of it was too much                             

A nurse then called my name. After 25 minutes or so, I emerged from R/T room 5 and walked across to where the girl sat at reception. I asked her if Phil such and such had already left the hospital and she told me no, he hasn’t come out yet. So I sat and waited for him. As he stepped out of his R/T suite, he was surprised to see me still sitting there. “I thought you would have been in by now” he said. I told him that I had and asked if he fancied a coffee? That calm smile came again as he told me, sorry but he had to get back to meet his wife in the car park.

I managed a handshake, but again, I couldn’t say the word goodbye. I could see that he knew I was struggling with the situation however and just he nodded and smiled an ‘it’s ok’ smile. 

It was one of the hardest moments of my life and put everything, life, money, my idiotic opinions into perspective and I know that I’ve a lot to thank that brave guy for.I mention his story because it completely changed the view that I had of my own cancer.

If Phil could stand and face The Reaper with such fortitude and courage, yet still laugh and smile about it, then who was I told hold a grudge against mine? I was angry with it and myself because I had created the complications due to waiting so long to visit a doctor. The bloody thing was a nuisance. Nothing more. I had no fear of it. I had other ways to spend my time and now here I was in a situation that would require time and effort to survive. So when I now lose myself in impatience, I think of Phil’s approach and the conversation that we had that morning in R/T at the Freeman Hospital in Newcastle.                                                              

AFTERMATH

Once my R/T was finally done with, over the following 18 months, I was to have 3 more 22.5mg Decapeptyl injections in alternating butt cheeks. These were carried out at my local GP surgery. I could walk there with a spring in my step, but always limped home. Although those injections were quite painful, the resulting numb feeling would disappear after about a day or so and considering that they were probably saving my life, those injections were of course, welcome.

Lowering testosterone levels causes some noticeable side effects and they will usually last for as long as the hormone therapy is administered.  Once the ADT ends, testosterone levels should gradually rise again and some side effects will reduce. That’s what I was told. However, what I wasn’t told was that it may take several months, even years before my T level returned to something near the baseline figure of 8.

Ok guys, I can sense your raised eyebrows and questioning looks. What side effect are we talking about?  Well, basically, the treatment plunges you into a menopause or to be more accurate, an andropause and that means that you are likely to encounter the following:

1. Hot flushes – man, how I sympathise with all the women out there going through the change. I now understand!  My homeostatic mechanisms are all screwed up. Keeping cool is a major battle and keeping warm can be just as trying

• Weight gain – especially around the midriff…. constant exercise and careful diet become a must in order to control one’s weight

• Body hair loss….not my head, but chest, arms, legs etc

• Gynecomastia….man boobs

• Cognitive decline…..you think and react a little slower. I wasn’t too badly affected, but there was a change. To combat this, I stopped using a calculator at work and chose to tot up figures within my head and with  pen and paper

• Fatigue….this was almost constant. My legs felt like lead and I would very easily fall asleep in a chair watching TV.

• Mood swings, irritability

And then there was the whole nine yards of emasculation:

• Testicular atrophy. No testosterone production, so no point in having them. They didn’t disappear completely, but they can reduce by about 30%

I’m happy to say that I did not suffer too badly with this. I had some minor reduction, but once ADT ended, some regain was made       

• Penile atrophy…..this is possible, but again I noticed not much change

1.  Erectile disfunction and decreased libido. This is the most common side effect of ADT and of surgery and of radio therapy. https://www.webmd.com/prostate-cancer/prostate-cancer-treat-side-effects

You can also suffer the following side effects from:

Radiation Therapy:

Surgery (prostatectomy):

Patients may experience diarrhea, changes in urination, and fatigue. These effects often begin in the second or third week of treatment and may worsen  

 urinary incontinence, bowel problems (such as radiation proctitis) increased risk of secondary cancers, such as rectal cancer. 

Urinary Issues: Many patients experience urinary incontinence, which can range from a mild leakage to complete loss of control.  This can occur immediately after surgery and may improve over time. 

In November 2024, I began to have pain in my lower abdomen. Short sharp stabbing pain that would make me wince.  I was also passing blood in my urine again.

I decided that this time, I wouldn’t just ignore things. So I made an appointment to see a doctor.  My first visit to the GP was very disappointing. He seemed to be uninterested, claiming that in his view, it was nothing at all to do with my prostate and that the likely cause was bladder muscle contractions.

OK…..not too reassuring I thought, I mean after all, I was being treated for stage 3B prostate cancer, so why would he think it was to do with my prostate eh? He dismissed my concerns and then dismissed me. Not once did he refer to my notes.

3 weeks later and there was no improvement at all in my situation, so it was back to the doctors. This time, I saw a woman doctor who immediately referred me back to urology. Why is it that the ladies always seem to be more switched on when it comes to health matters?

A scan and a cystoscopy followed. It was discovered that my prostate was bleeding, the most likely cause was late onset haematuria caused by the radio therapy I’d received about 14 months earlier. As the prostate heals from the bombardment of radiation, new blood vessels form. My prostate was VERY vascular. The new, young blood vessels had very thin walls and could rupture easily. Hence the pain, hence the blood in my urine.

I had a similar experience in February 2025. This time it was blood in my poop. Further investigation ensued with a colonoscopy that showed that the same issue was responsible within my colon and due to the same cause, radiation damage to blood vessels.

These problems can last for a number of years in some cases.

So guys, it’s important not to panic if blood appears in either your urine or your stools days, weeks or many months following radio therapy. It can be a ‘hangover’ side effect,  but ALWAYS have it checked out. NEVER ignore blood appearing in places it’s not meant to be. We are designed by nature not to leak

So there you go, prostate cancer like any cancer, is not much fun and nothing to look forward to.  As of today I am now 12 months post treatment, my last ADT injection was in October 2024. I am no longer on any medication for prostate cancer .

Group

My PSA level has stabilised and stayed steady at 0.027, 0.031 and 0.037. It is almost negligible. I still have my prostate, so will the cancer return and cause me future problems? That remains to be seen

My testosterone level is indeed ridiculously low and it needs to stay that way as testosterone feeds prostate cancer tumours. A catch 22 situation that I could do without, yet I’m still alive. I’m still above the soil…. and that, in itself has to be a bonus 

The trick is to avoid most of the above. You can do that by discovering this awful sneaky, insidious cancer early. Any cancer needs early diagnosis, it is absolutely vital.

I have been trying to raise awareness of prostate cancer, of symptoms and of the vital importance of early detection via social media, especially LinkedIn, where I felt a good number of guys falling within the target demographic would be, I.E. guys within the 45- 70 years old bracket. I’ve been at it for little over a year and this has met with some success. Furthermore, as a year has passed since I ended my hormone treatment, I have now become eligible to help certain charities raise awareness through talks and company visits by becoming a volunteer and advocate for Prostate Cancer UK.

I am also in the process of piecing together an initiative to reach out to guys within their places of work, to help raise awareness and hopefully to persuade guys to be proactive when it come to prosate health.

As the prospect of the UK Government or the National Screening Committee agreeing to implement any sort screening programme seems to be as remote as ever (something which should be viewed as a national scandal). That idea shall see me visiting various companies involved in the construction industry with a view to persuading their management teams to offer their workers a PSA test as part of their company policy health surveillance

So, at the end of the day, prostate cancer has lent me a voice and provided a platform to shout from. Becoming involved with PCUK has also helped me enormously psychologically and I intend to capitalise on that by trying to help guys who find themselves lumbered with this sneaky insidious cancer

The very idea that I would not use my experience to help others avoid the same idiotic mistake that I made when I blatantly ignored clear symptoms, is not something that I’d be able to live comfortably with.

To anyone reading this who may have concerns over their prostate health or who may know someone close to them who falls into one of the high risk groups, black 45yo+, white 50yo+ or are aware of known family history of PCa, then please urge them to visit the doctor and ask for a PSA blood test

Two links below that will be of enormous help to any fella finding themselves diagnosed with prostate cancer

 https://prostatecanceruk.org/

https://www.prostate-cancer-research.org.uk/

Alan- Stage 3b Prostate cancer