Eleven years living with advanced prostate cancer.
I’ve been thinking about doing this for some time and eventually decided to put pen to paper (as it were) as I reckon my experience over the years could help others in the same or a similar situation. I don’t want pity or sympathy, that’s not the idea of this article as having cancer genuinely hasn’t bothered me but what I do want is for men in a similar position to know that being diagnosed with prostate cancer is definitely not the end, there’s generally lots of good life left.
In November 2008 (63 years old) I was diagnosed with prostate cancer. I had only gone to my GP for a routine blood test as I did a fair bit of competitive sport at the time and wanted to see if my red blood quality was ok. So it came as a bit of a surprise when the results came back showing my red blood quality was good but I had a PSA (prostate specific antigen) of 8.6 and a Gleason score of 4+3. Apparently given my age my Doc and taken it upon himself to ask for a PSA test to be included when he sent the blood off to the lab which in my case had been the correct thing to do!
The next thing was to go for several scans and a biopsy of the prostate to confirm there was actually cancer present and I have to say a prostate biopsy is probably the most painful experience I had ever had up to that point in my life. Anyway it turned out the cancer was advanced and already on the outside of the capsule so it was suggested I consider radio therapy along with hormone treatment which didn’t really appeal. The thing is if I had felt ill or had any symptoms I might have considered some sort of therapy or treatment but as it was I felt extremely well and was still training hard and cycle racing competitively.
Anyway after a certain amount of pressure from my GP and a couple of specialist consultants who said I’d perhaps only got two years left if I didn’t have something done, I reluctantly started the initial tests etc at The Queen’s Centre for Oncology, Castle Hill hospital at Cottingham near Hull. This preparation for radiotherapy went on for a few weeks right up to the point where I had the tattoos on my tum as a guide for the radiotherapy (radical beam therapy) and a date fixed for the daily treatment. But that is as far as I went at the time, you might say I chickened out but that definitely wasn’t the case, I simply weighed up the pros and cons and decided to put off any treatment until I had some sort of symptoms and really felt I needed it.
So life went on as usual, my PSA continued to rise very slowly but I still had no symptoms whatsoever and continued to refuse treatment until early 2016, nearly eight years after the initial diagnosis at which point I did start to suffer from urinary retention which rapidly became worse. So after discussion with my consultant at The Department of Urology, Castle Hill it was decided I should have a catheter fitted as a temporary fix while he had time to do to a TURP (Trans Urethral Resection of the Prostate) or in other words, have my water pipe drilled out! The catheter and bag was a bit of an inconvenience but it didn’t bother me all that much and it did work extremely well while I waited for the op.
Then the day came in July 2016 when I had my water pipe (urethra) drilled out, it did sting a bit to start when I came out of the anaesthetic and went for a pee but a couple of days after that all was ok other than I still had the catheter fitted while things healed up fully.
The op (or procedure) was a brilliant success and my pee flowed freely again but during the tests and scans it had been revealed that my left kidney had completely atrophied (died) due to being drowned in the pee that had backed up over the past few months and consequently my right kidney was struggling with the load. So it was decided I should have a stent fitted to my right (good) kidney as the tube from my kidney to my bladder was also damaged and not allowing pee to pass through as quickly as it should. The date was set for September 2016 to have a “Right ureteric stent fitted” which duly happened and again I had to have a catheter fitted for a while until things sorted themselves out. But eventually all healed well and I could then manage without a catheter and bag and thankfully I could pee freely again!
I do know after this procedure many men suffer from some level of incontinence but luckily that’s something that didn’t happen to me and to this day I’ve never ever leaked a drop.
The stent in my good kidney has to be replaced every six months due to the fact it might become blocked and also there’s a risk of infection if left in any longer. So I’ve actually had half a dozen stent replacements since then, all done under general anaesthetic but only requiring an overnight stay in hospital and if I get down to theatre early enough I can even be back home later the same day!
Up until now I was till refusing medication (hormone treatment) but toward the end of 2017 I started getting wracking pains in my bones, really bad, hardly bearable and no painkillers would touch or ease it. The pain was generally round my hips and pelvis so I did suspect the cancer was now on the move which was soon confirmed via a nuclear medicine bone scan. I’d had the bone scan on December 6th 2017 and it showed “Extensive metastatic disease in the ribs, spine, pelvis, femur, humerus and scapular”. I must say this did frighten me a bit me as up to now I had a rather cavalier attitude toward the entire cancer situation the reason being it hadn’t really impacted on my life up to that point.
Anyway off to see my brilliant man at Castle Hill Urology Dept again and this time he laid it on the line, if I didn’t start hormone therapy immediately I wouldn’t have much longer to go. By this time I’d lost almost two stone and felt extremely ill all the time, in fact much like a had expected to be with cancer I suppose. Also I’d had a recent PSA test done at my own GP’s surgery and it showed my PSA was just over 1,200 which really did shock me as I didn’t even know PSA went that high!
Next step for me was to have a long talk with my lovely lady and make a decision between us as what the next step should be. The recent diagnosis had finally frightened me into starting oral hormone therapy which would eventually be replaced by three monthly injections of Zoladex which I started in March 2018 followed closely by chemotherapy (Docetaxel) every three weeks which started 17th April 2018 every three weeks until the end of August 2108 when chemotherapy finished.
Other than my hair falling out after the second infusion of Docetaxel I felt well throughout chemotherapy, with hardly any side effects and if I did get any they didn’t last long. Also my hair started growing back half way through the treatment and it’s actually stronger than ever now! While ever the word ‘chemotherapy’ does tend to strike fear actually having it was completely painless for me although I realise everyone reacts differently.
Then in October 2018 I started on Zometa (Zoledronic acid), a bisphosphonate intended to strengthen and repair the bones damaged by the tumours. However I can only have Zometa if my creatinine levels (accumulation of metabolic waste) are low enough and due to the relatively poor efficiency of my single kidney my creatinine count was too high and I was sent home with no treatment the last time.
It’s now August 2019, I had my kidney stent replaced again last month and other than that things are pretty quiet except I have now been told the cancer has now spread into my bladder; it never rains but it pours as the saying goes! Also I’ve opted to have a break from Zoladex (hormone treatment) as my PSA is now down to an amazing low 2.5 from over 1,200 two years ago. I’ll continue to have blood tests to check my PSA of it gets up around 8 or 9 again then I’ll go back on three monthly injections.
My health is reasonable but far from perfect I’ve just gone through a phase of really bad fatigue but that thankfully that is starting to lift now. I’m not sure of the cause but feel it might be the cellular damage caused by the 6 monthly infusions of general anaesthetic each time my kidney stent is changed, but I could be completely wrong about that!
Also my libido is virtually non existent due to the hormone therapy lowering my testosterone levels but I’m hoping that’ll return before my PSA gets to a level where I have to go back on Zoladex again. The risk of having a poor libido was the main reason I didn’t have hormone treatment back in 2008 but by the time it got to 2017 it was a matter of needs must, either have hormone therapy or die quickly and painfully!
Another strange thing which I can only think is associated with the fact I’ve only one kidney with a stent is that I store fluid around my middle during the day and pee it out at nigh via several visits to the lav. This means I go to bed with distended gut and wake in the morning almost back to normal and I’ve no idea why this is. I’ve asked my consultant and GP but no one can give me an answer so all I can do is live with it and hope it’s eventually go away. The trouble is I’m up every 1.5 hours so generally half a dozen times in the night but I seem to have got used to it now and tend to fall back to sleep within a couple of minutes.
So that’s where I am now, 74 years old and it’s almost eleven years down the road since I was first diagnosed and got to say I’m not feeling too bad. My endurance isn’t what it was although I do manage a long walk every day with my dog, ride my bike when I have the energy and do some weight training in an attempt to keep in reasonable shape. I now weight the same as I have all my adult life, 74 kilos and look really well or at least that’s what I am told so in fairness, under the circumstances I suppose I can’t expect any more .
In conclusion I’ve had prostrate cancer for almost eleven years, it’s now also spread into a fair bit of my skeleton and bladder and in the process my left kidney has died and I live with a stent in my right kidney. So I’ve had a lot going on but seem to have come through in reasonable shape which I put down to having excellent medical support, being pretty fit when I was first diagnosed, continuing to exercise day even if it’s only a walk and having what I think is a good clean diet with a massive variety of vegetables and fruit with some fish. I’m not officially a veggie but don’t fancy meat any more although I did try a burger a couple of weeks ago, first time in 74 years and really didn’t like it, in fact I reckon I’ve missed nothing by not eating burgers all these years!
Right I won’t rattle on any further other than to say I have genuinely never lost sleep over the fact I’ve got cancer, I don’t let it bother me at all. Ok it’s rather uncomfortable and inconvenient some of the time but I do expect that. Also a massive positive factor is since the first day I was diagnosed I’ve been in good hands and received the very best treatment available from the NHS, the doctors and nurses have been absolutely amazing, in fact in a strange way I’ve thoroughly enjoy the entire rather interesting experience.
I suppose the moral behind my story is that if you are diagnosed with prostate cancer, then don’t see it as being the final curtain as prostate cancer generally grows very slowly so you’ll have time to sit back and consider all your options. There is no reason to be frightened, you’ll be in excellent hands and potentially have many years of good life left, in fact there’s quite a big chance you’ll live your full life span and something completely different will get you in the end!
So please remain positive, there really is no other way.
Pete Read