Your PSA has risen to 0.04 from 0.01. Please let us know if you have any symptoms of concern though it looks from your letters that you will be having follow up with your private urologist.
Best wishes
***** Medical Practice
I was a tad shocked to see this. It was not what I was expecting and most certainly not what I wanted to hear. I contacted my consultant, who replied
Mr Tichborne
Yes, we are due to discuss this next Monday, but your PSA remains well within the acceptable range of 0-0.2 ng/ml.
Best wishes
So where I'd been expecting a brisk two minutes, I realised it would be more nuanced (shall we say). On Monday, with a mild sense of dread, I joined the call ( consults are done on line these days for such follow ups). And so it transpired. Professor Eden explained that there a number of reasons that such a result can occur, and a recurrance of the cancer is not the most likely. However, it is a change and recommed that we increase the frequency of my follow up PSA tests from eveyr 6 months to every three months and chat again in June. He explained the more likely scenarios in some detail. Briefly some vessels can regenerate or partially regenerate, leading to a non cancer related PSA increase. But of course, it could also be cancer. It is at a very early stage if it is and whatever happens, there is no reason to panic.
Rather annoyingly, it coincided with one of my three non drinking days of the week. Of course Professer Eden is right. There is no reason to be concerned right now. It is afifth of the level where it is an issue. But.....
This journey has gone on for me since November 2011. I had hoped that surgery would have addressed the issue. Maybe it has, but I am now back in the swirling whirlpool of uncertainty. PSA tests every threee months, after a rise, means more anxiety. I will approach the next test, knowing that it has sharply increased, albeit to nowhere near a level of concern. I had been in a good frame of mind and now I am not. Much as I'd love to get off this particular carousel, it is not an option. I just have to wait and see. It occurred to me that Professor Eden's message of "don't panic" dropped the word "don't" as me brain processed it. There is absolutely nothing I can do except wait. In May, I'll have my next test. I can't say I'm looking forward to it. But.......
There is one aspect that, although it doesn't really make me feel full of joy right now, is worth noting. Just suppose that the worst case scenario is occurring. I know about it and it can be dealt with relatively early. Should that happen, I am sure it will not be pleasant, but I will still be in a better position than I would have been, if I'd not been diagnosed in 2011 and had the two rounds of treatment I've had.
So to sum up, I've been re-assurred by one of the best prostate cancer surgeons on the planet that there is nothing to worry about right now. Since then, all I have done is worried
If you're a bloke of a certain age and you haven't get yourself tested, especially if you are in a high risk category.
Are you sitting comfortably, you might not be by the end of this blog, but I genuinely believe that blokes need to talk about these things. I was listening to BBC Radio London this morning. A guest on the morning show was saying she'd directly saved four lives through her work raising breast cancer awareness. That is a great thing and I am proud to say that this series of blogs has saved the lives of six people, who have taken the trouble to get in touch and tell me that it inspired them to get checked out, and the checks uncovered symptoms that required treatment. They will not be joining the 12,000 men a year killed by prostate cancer, making it the second biggest killer. I've been saving sharing this story until now, but at The False Dots gig at the Dublin Castle on the 21st, a stranger came up to me, introduced himself and his wife. They were from up North. They had come down specially to see The False Dots. Why, eight years ago, he'd read my blog, had a PSA test and found he had prostate cancer. It hadn't spread, but he had to have it removed. The Doctors told him that it had been caught just in time. They thought they'd 'got it all' but weren't sure. After five years, with a zero PSA reading, he was declared clear. They fancied a shopping trip in London and decided to watch the band and say thank you. He then said "Can I buy you a pint, I can't really ever repay you, but its the least I can do". He then said "It was great seeing you up onsateg doing your music, life goes on, doesn't it?".
We had a pint, discussed football, music and life for ten minutes. Although we only spoke for ten minutes, he felt like a brother. Just before he left, he went to the loo, his wife turned to me and said "You don't know what it means to me that he read your blog and had that test, the thought he wouldn't have seen his Grandaughter is too horrible to contemplate". She then said that he was doing a lot of work in his home town with a Prostate group and often pointed people at my blog. When he left, we gave each other a hug and wished each other luck.
Eight years he's been clear. Dull and boring. Not words that will excite you, set your heart racing or make you lie back with a cup of tea and think "Thank you Lord" (or other expressions of gratefulness as appropriate as to your beliefs). However, when you have had surgery for cancer and you are having your annual review, the the duller and more boring it is, the better. In August 2023, I had surgery to remove a cancerous prostate. At the time, I felt like my world was ending. The side effects of my operation are infertility (100% guaranteed as the seminal vessels are removed), incontinence (maybe for about 50% of men in the first six months, dropping to 10-15% after a couple of years) and erectile dysfunction (50-60% of men). I had nerve sparing techniques that markedly improve the outcomes with regards to contenince and erectile function. These technioques were only available if you went private at the time, although I believe that NHS trials are now underway. I found the prospect daunting. My outcome was pretty good. I am continent, I was almost immediately, and have a degree of sexual function, which is markedly improved with cialis. I have days when the cup is half empty and days when the cup is half full.
It took me a week to fully process this meeting. We'd just finished our gig and I was buzzing. I was elated to hear his story. I never really think of myself as one of the good guys, but for a moment, I felt that God had put me here for a purpose and I was living up to his plan. I don't want to come over all religious, but it is the only way I can describe that feeling. The guy wasn't slushy or sentimental. He was a proper bloke, who just felt saying thank you was important. But afterwards, in a sober, quiet moment, I realised that it wasn't meeting him that really made an impression. It was his wife's words "the thought he wouldn't have seen his Grandaughter is too horrible to contemplate". When people have said to me "I can't bear the idea of not being a whole man", I've always struggled to find the words to give a serious response, which might persuade someone that it will be OK. She didn't have to say anything, but in one sentence she cut through all of the waffle, bullshit and everything else. For that I will be eternally grateful. His Grandaughter is two. I never knew any of my Grandparents. I always felt robbed and a tad resentful. All of my siblings were born before my maternal grandmother passed away. They all have memories and would talk in hallowed terms of 'Nana'. There is a little two year old girl, who will know her Grandad, because eight years ago he read my Cancer blog and got a PSA test.
We don't always realise our value and worth to those we love. Life isn't perfect, we are not perfect, but when we go, we leave a massive hole in the lives of people we love. A hole that cannot be filled because each of us is unique. So if you are over 50 and especially if you are deemed at risk (close blood relatives have had prostate cancer), please consider a PSA test. It ain't perfect, but six people have read my blog and caught the bastard disease before it spread, so it is not a waste of time. Just consider, in sixty odd years time, when I am long gone, a lady may just be telling her grandkids tales of how she spent time with her lovely grandad and how much she loved him. Why? Because he had a PSA test.
It's not been fun for me. But that short chat on the 21st made me realise that the cup isn not half full, it is overflowing, but with a very different brew to the one I thought I ordered at the bar.
Calling all my male friends. Last year I had a radical prosatectomy. I was diagnosed in 2011. I had HIFU treatment in January 2016 that addressed it for seven years, but it came back. Luckily I was under surveillance, so they were able to address it and my last post op PSA test came back clear. I opted for the operation as Professer Christopher Eden assured me that his procedure had a strong likelyhood of retaining my erectile function and my continence. He was true to his word. Why was I diagnosed? I had a male all round health check in 2011, that deteted a high PSA. I'd only gone to the doctor as I had a knee problem following a football injury, he suggested the 'MOT'. If you are over 50 or have a family history of prostate cancer, get a check. I wrote a song chronicling my journey. It is funny, but 100% true - please have a listen and share this, this is important. I was gobsmacked when I was diagnosed as things like that don't happen to me.
A year is a long time. A lot has happened. My recovery had several stages. The first two weeks, I had a cathetar, so was pretty uncomfortable. When that came out, the question was whether I'd be continent. I bought a stack of pads, but from day one, I didn't need these. Occasionally, there was a small dribble if I was inpatient and didn't empty my bladder properly. I've found there are two situations which can be problematic. One is where I drink more than four pints of beer and do not have a loo handy. The other, which can be more problematic, is where I am sitting down and I suddenly reach down to my left or right to pick something up off the floor. The strecth seems to open the sphincter to the bladder. A small amount f leakage will occur. The time this is most a problem is at band rehearsals, when I am setting up guitar pedals. It is not really enough to constitute a problem, but it is not pleasant. I did my pelvic floor exercises before and after, which I believe helped. I have tried to limit my caffeine input to three cups of caffinated tea a day (in the morning) and I try and avoid having more than four beers. If I am on a sessions, I'll have a single shot of whiskey instead for the round. Much of it is learning to manage situations. I don't go on massive drinking benders particularly often, so it isn't a big problem for me, but on a couple of occasions I've got carried in the moment and realised my mistake. Fortunately Thameslink trains have loo's. It's when I've taken the tube I suffered.
As to sexual function, that is more of a work in progress. With the help of Cialis genre drugs, I can function sexually. I've not had what you'd describe as a sponatneous erection without them. I have full feeling when sexually aroused and can reach a climax. It is odd as the sensation is exactly the same but nothing comes out. One of the main reasons that men don't have surgery is fear of losing sexual function. It is not great to have to take pills, but on balance, it is better than death and I have a supportive partner. I discussed this with my surgeon and he said that male sexual function starts to decline from 55. As I am 62 this month, I should accept that I can perform with tablets and not be too hung up about it.
So what was the alternative? Radiotherapy or do nothing. If I'd had Radiotherapy, I'd have been on hormone therapy for three months, had six weeks of radiotherapy and then had another year of hormone therapy, so I'd still have six months of treatment left. Theoretically, when this was done, my sexual function would have returned to normal. I was very much leaning towards this initially, when the team at UCL told me I'd have no sexual function post op. When Professor Eden told me that the neurosafe surgical procedure offered a far better chance of preserving function, I decided to go for that. I was pleased that I did. I would not like to still be in treatment. As to doing nothing? Well he said that I couldn't be sure, but most likely within a couple of years, given the pathology of my prostate, it would have spread. Then I'd have been on hormone therapy for life.
The neurosafe procedure is only available privately. I was diagnosed originally in 2011, when I was 49.I have no idea how I'd have reacted to the news that my sexlife would be over. I personally think it should be a default for all men under 55. It is expensive, but cheaper to the NHS than long term cost of men declining treatment and dying of the disease.
Life moves on and life goes on. I was considering the future of this series in the blog. For the foreseeable future, I'll still be having quarterly PSA test and bi-annual consultations. There's a more than reasonable chance that it might be a rather boring series of 'everything is OK blogs', I certainly hope so, but only time will tell. Should I continue with it? I'm not a doctor so all I can really do is pass opinions. At some point, I may well put it all in a book of some sort. Would anyone be interested? It cast a shadow over a decade of my life. There are quite a few books on the subject, few have been satisfactory to me, as someone on the journey. Enough blokes get the horrible condition to make me think there is an audience. Who knows.
-----------
About Rog T's cancer blog.
For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life.
For those of you who aren't, here's a quick summary. I'm 61 years old and in October 2011 I had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I was put on a program of active monitoring. In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0, February 2015 it was up to 5.5 and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL).
My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine. This was followed by two in February 2022 was 6.7 and October 2022 was 6.6 was stable.
In March 2023 had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSA test in June saw a rise to 12. On 9th August 2023 I had a RARP radcical prostatectomy procedure that, God willing, has addressed it.
Got the picture?
Here is a song I wrote to raise awareness amongst men of the need to get checked for Prostate Cancer
***** Warning - This blog contains stuff that people who've not had a radical prostatectomy may find uncomfortable.
Christmas is coming. This year will be a bit different. I had my prostate removed and I've had to change a few things and I've learned a few things.
So lets start with what has changed.
I can only drink three cups of non decaffinated tea per day, if I want to have a regular toilet usage pattern
I can only drink a maximum of four pints of beer on a session, if I don't want to wake up in a damp patch.
I am vulnerable to stress and anxiety in a way that I have not felt since I was in my early teens.
I am not alone in any of this.
And what have I learned (look away now if you are easily shocked by discussions of bodily functions)
I can have an orgasm without having an erection (Both at the same time is a challenge after an RP proceedure for me at the moment)
It is possible to think you are having an erection when you are not
I am older than I thought I was before the op.
If I go out, I need to plan a route that includes a toilet stop a maximum of 45 minutes apart, if I am drinking beer or tea.
Being happy or even in mental balance takes a lot of work after a radical prostatectomy.
Viagra type medication is not only for other people.
People aren't psychic and will know none of this, unless they've been through what I have been through.
There. I put it out there and it wasn't easy. But I am not the only person dealing with this right now. As I write this, a friend is under the knife, having his bladder and prostate removed. I thought I'd had a bad time, I've been trying to encourage hi,. He's been told that if he doesn't have it, there will be no 'Next Xmas'. I thought I had bad time. There is always someone who is deeper in the mire.
What is rather strange is that if it wasn't for that day in August (and the surrounding stress which started in March, or in November 2011, depending on how you look at it), 2023 has been a decent year. My business will make a profit, albiet a small one, following the Pandemic, which nearly killed it. My football team, Manchester City won the treble, which I'd never have dreamed of when I was diagnosed. My band (The False Dots) has had an absolutely awesome year, with some brilliant gigs at The Dublin Castle in Camden town and locally (we are playing again on Saturday 23rd so come down, TICKETS CLICK HERE). We released our first digital single as well! Please have a listen if you can!!
In any other year, I'd be buzzing. But this year? I can't lie, I feel anxious and apprehensive. Not because I am particularly concerned about the cancer at this point. The PSA test I had post op was very positive. What bothers me is that, post op, I don't really feel like a proper man anymore. I have an extremely supportive partner, who assures me that the most important thing is that I am alive and the cancer has most likely been dealt with permanently. My friends couldn't really give a stuff. But as far as I'm concerned, I do not feel good with myself. Maybe it's in my head. Maybe it isn't. I still have the same sort of dreams that I had before, but I wake up and they bother me. I realise that now, those things are dreams, there is no prospect at all currently of me being what I was on the 8th August. I was very reluctant to have a radical prostatectomy because I didn't want to be in the situation I am right now, with regard to my male potency. I find intimacy mildly stressful at time, whilst still embracing the idea. I have darl thoughts, where I wonder whether I'd have been better off not having the RP and taking my chances. If I'd simply let the cancer develop and when it started to be a problem, gone on hormone therapy (which is in effect chemical castration), I'd have had a few years where I felt vaguely normal. Of course, I'd have been in a very different situation 5-10 years from now, potentially, but who knows, medical science, may have pulled my nuts out of the fire then. My wife told me, when I mentioned that, that it would be a really selfish thing to put the family through. Although it wasn't an option for me at the time I decided, in hindsight, there are times it seems like a better option.
But, and this is the big but. My PSA had doubled in a year. My prostate had a signficant number of contained tumours, it was in far worse shape than I or my doctors had realised. It was probably caught just in time, before it started metastasising. Things are improving. With the assistance of a Cialis prescription, there are rumblings where there was nothing. Apparently, the situation with erections can improve for three years and according to my mens health physio, I am ahead of the game and the prognosis there is far better than it seems to me right now.
I share these dark thoughts, not for any other reason than because when I talk to friends who have been through the same thing, these are the feelings we all have had. We work through them. In truth, four months after surgery is really no time at all. In a years time, I will have a far better perspective on where I am. This Christmas, I have 22 family members coming for Xmas. My nephew and Godson has a new baby, my sister and her husband are over from the USA for the season (he had a prostatectomy a few years back and is enjoying life). I am going to see one of my favourite bands on Thursday. Normally, this is accompanied by a hefty supply of Guinness. This year, I will limit it. I have to work on Friday anyway, so probably not the worst thing.
In truth, this Xmas is very much a time when I am feeling very conflicted and anxious, but am also in some ways more optimistic and positive than I've been for a long time. The cancer has made me more determined than ever to embrace my music and my life. With regards to what will happen with the cancer, whatever will be, will be. The prognosis is as good as it can be. It is highly likely that I have been cured permenantly, but only time will tell. Maybe drinking less is no bad thing. I only really drink to excess when I am out with friends, I don't drink when I am in on my own. I've never felt like "I need a drink" on my own. I have resigned myself to just living with whatever the situation is regarding my potency. I am doing what my mens health physio tells me to.
The thing that I am 100% happy with is that I don't feel like I have the Sword of Damacles that has been over my head since 2011, when I was first diagnosed with a Gleason 3+3 cancer over my head. I feel that I can at least approach 2024 from the viewpoint that things can and will get better (yes I know that is a foolish viewpoint, as men make plans and God laughs).
Back at the start of the year, I wrote a blog about my New Years Resolutions. I had no idea that my cancer would flare up and cast such a shadow. However, I have by and large met all of my resolutions.
I stuck to my alcohol pledge, in fact probably exceeded it due to the op!
I met. I have finished my book, I just need to sort out the pictures and it's ready. I think its is pretty good. I've decided to not do the cancer episode. I think that warrants it's own little book.
I only managed two instalments of my London Symphonies project, despite committing to six, I simply didn't have the band width withe everything else going on.
The band has finished the album and done more gigs.
And the biggest plus, I've finally learned to ignore the idiots on Social media. Life is to precious to waste on such people.
I will leave you with the very best wishes for the festive season. None of us know what the future holds, so enjoy the time with people you love and celebrate as you see fit. Count your blessings, enjoy the good things, persevere with the challenges.Whatever else is or is not true, we live at the best time ever to face Prostate Cancer. The treament options increase constantly and we will eventually beat this nightmare. Some of us may not see the promised land, but we will get there.
I leave you with a little gift. My amazing band partner, musical director and engineer, Mr Fil Ross, has recorded an Xmas single. It is rather good, so if cheesy Xmas numbers are your thing, have a listen and tell your friends. It makes a big change from the amazing rock and roll bass guitar he plays with The False Dots.
There are many lessons that I've learned on this rather unwanted journey. One is that there are very difficult choices to be made and in truth we'd all prefer not to be in this position. Another is that there are lows and highs on the way and not all are when you expect them. Today has been a day of highs. Why? Well you may be rather surprised to hear this. I was advised when I had my radical prostatectomy (RP) on 9th August to avoid caffeine. Since then, I've been drinking decaf tea. I rarely, if ever, drink coffee, but I drink far too much tea. There are many things I've had to adjust to as the new me emerges post op. I am rather lucky. I seem to have no issues with continence at all. I am now 7 weeks out from the op. I had a cathetar for 2 weeks (horrible), I wore pads for 2 week (no major accidents) and I've just worn normal pants for 3 weeks. Last Wednesday, I wore a pad for security as I was meeting friends for beers and a curry in central London and I was nervous about the journey home. As it transpired, the pad was not needed, but the security helped me relax.
My mens help physio, Mr Gerard Green informed me that my recovery was pretty remarkable, compared to most men he's seen. I am blessed (not least to have had an exceptional surgeon in Professor Chistopher Eden). Last Wednesday was an important personal milestone for me. It may sound silly, if you've never had continence issues, it may be only psychological, but the fact I had a relatively boozy evening in town (I didn't go mad but drank more beer than I have since the op, by some distance) was a big deal. It was pleasant. Apart from a quick recap on how I'm coping, my evening was spent discussing football, the IT failure in air traffic control, beer and music. For a few hours, I felt human. It was great.
Anyway, why was today a high? Today was another milestone. Not an intentional one either. I was at work and we'd run out of decaf teabags. I had a dilemma. Do I drink normal tea or do I drink camomile, that I can't abide. I thought "what the hell, I'll see how I get on with normal tea". So I had a few cups during the day. I realised why I've never really drank decaf before. It doesn't taste as good. What surprised me even more was that the caffeine made me feel great. I have been feeling quite morose since the operation, apart from when I've been busy. Right now I am actually feeling rather good in myself. It's given me a dilemma or should I say a choice. Do I stick with the decaf or do I go back to my old PG tips? I like the feeling of being me. However, I've been told caffeine irritates the waterworks. The question for me is whether or not I am healed enough for this to not be an issue. I don't want to suddenly find myself having continence issues, but I do rather like feeling human. I'm back home now and the dilemma is whether to have a cup of decaf or normal tea. I may just have a glass of water instead, as I am not craving tea and I probably should drink a bit more of the stuff ( I have 1/2 litre at night an 1/2 litre in the morning). I think I will adopt a strategy of normal tea before lunchtime for the next few weeks and see how things go. It is all about balance.
As to my general health. I have a few issues that need resolving. I need to get my weight down. I have always kept myself pretty fit, but following an injury to my ankle in July 2022, I had to give up five a side football in March. The stress around the cancer lead me to get lazy and my weight has balloned to around 107kg. This is far too high and needs to be addressed (FYI I'm 6'1). I suspended my gym membership for September, but from next week, I will be back in there and aim to swim five times a week until I can get properly back to a full regime. I am back on salads at lunchtime and my aim is to get to 94 kg by Xmas. This should be quite achieveable, once I start properly exercising.
I have also been advised that my cholesterol is high and according to my doctor, I should be taking statins. I am not keen, as this will become a lifetime prescription. As my blood pressure is normally pretty good and my heart rate is usually excellent (according to my fitbit), I am not as concerned as my doctor seems to be. My resting heartrate is now more or less back to it's usual level of around 58bpm. It rocketed to 70 just before the op.
I put this down to stress. The peak is the weekend before the operation. I was drinking to much and worrying too much. I am speaking to the GP cardio clinic on Thursday. I will tell them that I am doing nothing until after the new year, when my weight and diet should have regularised. Statins can affect your renal function and I want to be 100% sure that I am not having any more cancer treatment before I take that path. My brother had a bad reaction to them and I often have a similar reaction to him when it comes to medicins (erythromycin nearly killed both of us). This makes me very cautious indeed. Having said that, one has to be sensible. My view is that I address the weight and diet and then see. Today was the first day I've felt motivated to look to the future and address the other issues.
I had my PSA results, which were very encouraging, being 0.02. This is exactly where they should be following the operation. Professor Eden advised me that I am statistically very likely to be completely cured of cancer, so life can progress.
The only blot on the horizon, which is a big blot for me, is the lack of sexual function. Maybe I've been overly optimistic about timescales. There has been the odd murmour, but despite the medication, this has not been anything sustained or what I might consider a full erection. I'd hoped for something more at this stage, but I've been assurred that given everything else, it is likely to return. For some men this takes up to three years. I'd like to say this is not a big deal, but for me it is. Men don't really feel comfortable talking about such things, but we should. Sharing information helps you get there quicker.
One thing that is clear to me from talking to other people who've had RP, is that I am extremely fortunate (which I put down to using the best surgeon in the UK). My wife tells me she is just relieved it's been addressed and the other things are less important in the scheme of things. It's a transition and I need to adapt. I was reminded of something my Dad once told me. He said that whether your glass is half full or half empty is irrelevant. What matters is that the Bar is still open and they are still serving. That is the bigger picture. And however I look at it, the bar hasn't closed just yet.
--- About this feature
For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life.
For those of you who aren't, here's a quick summary. I'm 61 years old and in October 2011 I had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I was put on a program of active monitoring. In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0, February 2015 it was up to 5.5 and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL).
My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine. My two latest ones in February 2022 was 6.7 and October 2022 was 6.6 was stable.
In March 2023 had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSA test in June saw a rise to 12. On 9th August, I had a radical prostatectomy and am currently recovering. Early days, but hopefully the surgery has curedt he problem of cancer. My continence is good, the next batttle is erectile function.
Got the picture?
And finally. I'm a musician. I am blessed to play guitar and sing in the finest band - The False Dots - on Planet Earth and I wrote a song to get blokes to get a PSA test and talk about this stuff. Please have a listen. It's a banging tune! There is nothing more uplifting than hearing an audience join in for the last line!
So it is now six weeks since I had a radical prostate biopsy. By all of the available measures, I am doing well. No residual pain, mostly no tiredness, 99.9% continent (can't drink too much beer and do long journeys with no loo confidently). Some signs of returning sexual function since I started taking the pills (tadalafil 5 mg a day). I had a PSA test on Monday, so fingers crossed. I believe it should now be undetectable, but a part of me is fully expecting it to be the same as it was before. There is no rational reason for this, but in this journey, every time I thought things were good, I've been kicked in the teeth, so I try and prepare for the worst whilst hoping for the best. It is a difficult journey. So to sum up, physically, it is all pretty good. I did a gig with my band on Thursday and no ill effects from the excitement (I sing and play guitar in a Ska/Punk band), apart from a bit of tiredness.
But your physical wellbeing is only ever half the picture. I feel very different in myself. I do not really like how Ifeel about myself at the moment. I am normally quite a positive and confident person, but I don't really feel like that at the moment. I almost feel like I am a different person. I feel far more cautious and less inclined to take risks. I haven't really felt like drinking alcohol at all. I am due to see a group of friends tonight for a couple of beers and a curry. Normally I'd have been looking forward to this all week, but all I am thinking of is whether I can get home safely without needing to use the toilet in a hurry. I've decided to wear a pad for the first time in two weeks as a precaution. There are a couple of gigs on, that normally I'd really fancy, but I can't really rustle up the enthusiasm to book tickets. I had the chance to drive to Manchester last night to see City play in the Champions league, but again I couldn't be bothered. Whilst we were playing the gig last friday, I found I felt pretty normal. As soon as I got off stage, I was completely wiped out. It wasn't so much that I didn't want to talk to people, I simply couldn't find anything to say. Normally I'd stay chatting to the early hours, but after a pint, I just wanted to head off home.
All of this is very unlike me. Is this just a part of the healing phase, your body saying "slow down, we need to get better" or is it just a new phase of life, part of getting older, which my body was shocked into accepting (I'm 61)? I'm hoping that one day, soon, I'll wake up and feel like the old me, the me I am used to. The me that is spontaneous and looks for things to do, not reasons not to do them.
I guess what I am saying is that right now, the glass is definitely half full, but all I am seeing is the empty half.
++++ A small footnote. I went out, met my friends, had a few beers and a rather excellent curry and had a lovely night. No accidents on the way home. I have realised that most of the problems are in my mind. It is fear of accidents etc that is bugging me rather than accidents themselves. I am lucky
--- About this feature
For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life.
For those of you who aren't, here's a quick summary. I'm 61 years old and in October 2011 I had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I was put on a program of active monitoring. In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0, February 2015 it was up to 5.5 and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL).
My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine. My two latest ones in February 2022 was 6.7 and October 2022 was 6.6 was stable.
In March 2023 had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSA test in June saw a rise to 12. On 9th August, I had a radical prostatectomy and am currently recovering. Early days, but hopefully the surgery has curedt he problem of cancer. My continence is good, the next batttle is erectile function.
It's now 12 days since I hadwht my prostate removed at the London Bridge hospital. In two days I will have my catheter removed and will know how it has affected my continence and what sort of erectile function I have. The good news is that there is almost no residual pain, although I can only sit down for short periods as my perineal area becomes sore very quilckly. Oddly I did not notice this until last Thursday and if anything it has become worse. This is now the only real pain that is bothering me, apart from the odd bit of irritation from the catheter. What has become far more pronounced is the tiredness. This has actually been far worse this weekend than it was the first weekend after I was released from hospital. I've set myself a target of walking two miles a day and yesterday this was a real struggle.
I spent most of the day watching football and dozing off. I've noticed that my urine has also been much pinker than it was for much of last week. It is not dark red, but there is definitely still a small amount of bleeding taking place. From reviewing my literature, I've concluded that this is nothing to worry about, although I will discuss with the team when I see them on Wednesday.
So far today, I've not felt as tired. Clare and I took the dogs to Lyndhurst Park for the first time since I had surgery. I didn't find it too bad, but had a sit down on a bench at the park whilst she through the ball for the dogs.
I had hoped to have returned to work today, but got cover in as I do not want to overdo it. Duing the early part of last week, I thought I'd be fine, but I have realised that I do need to take this all rather easy. I do hope that the perineal pain dimishes considerably over the next few days, as I'm due to take a short break in France at the end of the week.
I've still not had a drink and TBH I've no desire for one. We did manage a takeaway curry and some fish and chips over the weekend, although my apetite is not fully recovered. I'm not off my food, but I am not really feeling very hungry either.
I've started following a couple of Prostate support groups on Facebook. It is interesting to note the number of female partners who post. It brought home just how difficult PC is for partners. I've realised that my early detection has (thus far) spared me some very difficult issues. Reading some of the stories from men and their partners with stage 4 PC are heartbreaking. The last few months have been tough, but I'd far rather be able to make choices that I've been given than be in the position of some of the poor chaps who's stories I've been reading. One of the missions of this blog is to get as many men as possible over 50 to get a PSA test. It's not perfect, my last few months haven't been fun, but the disease is not in my lymph nodes, glands or bones. I am hoping that the op will keep it that way.
To sum up, I'm recovering, not quite as fast as I hoped, but I am recovering. Wednesday is the big day when I will really have some idea where I am.
I wrote a little song to encourage guys to get a test, before they get symptoms. Please pass the message on.
For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life. For those of you who aren't, here's a quick summary. I'm 60 years old and in October 2011 I had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I was put on a program of active monitoring. In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0, February 2015 it was up to 5.5 and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine. My two latest ones in February 2022 was 6.7 and October 2022 was 6.6 was stable. My MRI in March 2022 showed 'a change' so I am now awaiting a biopsy. I had a PSA test in late March which also showed a marked increase to 10.3. I had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSA test in June saw a rise to 12. I saw the surgical and oncology team to weigh up the options. I was none to impressed with the UCL surgical team and their attitude to my concerns about impotence. They told me that due to my previous HiFU treatment, nerve sparing was not an option. I was very much leaning towards radiotherapy, when a friend recommended a second surgical opinion. I saw Professor Christopher Eden, who advised that using the Neurosafe procedure, I would have a good chance of retaining erectile function. I decided on this option and had a radical prostatectamy on Weds 9th August 2023.
Things are not great but they are not dire either.
I've no symptoms apart from needing to wee quite regularly and sadly for a few people, if I'm gonna die soon, it (hopefully) won't be from Prostate cancer. Got the picture?
As you know, this blog has been chronicling my journey with cancer since 2011. There have been ups and downs. The last six months have been very down. You need all of the support and love of your families. I believe you should get the best care possible for yourself and take as good care of yourself as you can.
It is fair to say that I am having a difficult time at the moment and I thank my wife, family and friends for their support. I am lucky that I have had this. It makes it all seem better. I had wanted to write a blog today, detailing my chosen treatment path. However, for reasons I do not wish to discuss today, which are non medical, I cannot. This is causing me much mental stress.
What I do want to say is that whatever happens, I will continue to support the cancer community and especially men with prostate cancer. My blog has a large readership and I will continue to use this platform to push for the very best care and results for men and women affected by cancer.
A friend signposted me to a treatment that provides the very best outcome for me with one of the top surgeons in the country. I am grateful to his input. I am hoping to have surgery on the 9th August, but there are issues to resolve around this, which have cropped up that need to be resolved before I can fully discuss where I am going. I am posting this so that my readers, friends and family know that I am fine and there is a path forward, which I believe will mean that I can get on and enjoy my life.
I urge every one of you to mind your health. If you were born with a prostate and you are 50+ get a PSA test or other prostate test. If you were born female, get screened for breast cancer, especially if there is a history of cancer in the family. None of this will stop you going through what I am going through right now, if you are blighted with the big C, but it will give you better options if it is caught early.
There are many things that I want to say right now, but it is not the time. Please be assured that none are related to my physical health which is pretty damn good right now.
One thing I've learned in life is that if you just crumble and don't fight when faced with a challenge, you always lose. Even if I lose the battle I have, I intend to do everything in my power to ensure that no one else has these ridiculous challenges put in their way. And don't worry about me, I'm fine. I'm off on holiday for a few days to top up my tan.
And finally, as you know I write songs. Here is one to urge men to get a prostate check. It has proven rather popular at recent shows
That is the conversation you will have with me if you stop me in M&S. Why? Because you probably don't want to hear the truth and I probably don't want to waste your time. How would it go if I was honest and you were prepared to listen?
"How are you Rog?"
"I'm a complete fucking mess and I'm really f@@cking angry. I have what for me is an almost impossible decision and I think that the way the NHS is set up does not give me the proper opportunity to make a truly informed decision. I have no issue at all with the quality of care, but I have a massive choice to make and I feel that the way the information is being presented to me is not really giving me the chance to be certain."
So why would I say that? Why am I angry? Well I saw the oncology team at the Royal Free a couple of weeks ago and I saw the surgical team at UCLH last Friday. I have to say that the Oncology team at The Royal Free gave me 100% confidence and answered my questions in a manner that I felt gave me a good feeling as to the pro's and cons, no issue there. The surgeon I saw at UCLH , who is one of the leading surgeons in the world, and on a technical level is the person I want to do an op if I have one, felt almost like a double glazing salesman, trying to convince me that I'd be insane to consider anything else other than surgery.
I felt it was pretty clear that the surgeon immediately decided that I was a bit of a moron (probably rightly when it comes to treating cancer, he's a world expert, I run a music studio and have two rather poor A Levels). In fairness to him, he's not selling double glazing, he's trying to save my life and he clearly believes that surgery is the only sensible option, but to say that he didn't seem to understand my concerns about surgery and issues with surgery is a wild understatement.
So what are my concerns? Well I am 60 years old and if I have surgery, it will mean I am functionally impotent. It may be that I can get an erection with viagra or a pump, but as best I understand, there will be little, if no sensation. As I had HifU in 2016, he informed me that it was virtually impossible to 'spare the nerve endings', as there is significant scar tissue. If I have radiotherapy, there is around a 70% chance I will eventually have some normal erectile function. My surgeon explained that the downside was that there is a 1 in 5 chance that the cancer will return and then I will have to have brutal surgery and I will not only be impotent, but also completely incontinent. He said that this would be far worse than not being able to have spontanious sex ever again. To him, yes this is a no brainer, but it isn't to me.
The more I think about it, the more the way the NHS manages these issues infuriates me. I do not want to speak to different teams at different times. I want a conference call, with all of the disciplines, so I can hear each side and be able to challenge them with both sides giving answers. Clearly surgeons think surgery is better and oncologists think their path is better (although the oncologists advised me to have surgey or hifu in 2016 and they didn't this time). In truth, my surgeon is right, he is better qualified to tell me the outcomes, but so are the oncology team and what they told me, if not contradicting each other, are laying out two scenarios which have very different pros and cons. Having both on the same call would mean I could actually get a more balanced view.
After the call, in the evening I had a curry with a mate who had surgery in 2018. He said it worked for him. He cannot get an erection but he's fine with that. He was pleased to have got it done in one go. Radiotherapy is a 7 month programme, which for him seemed to be a path likely to cause significant stress. I realised we value different things. For me, the concept that at some distant point in the future I may, once again, have some sort of sex life, is a hope to cling to.
I wonder how many men die for fear of losing sexual function. It is clear to me that the medical community do not properly appreciate this. If I'd had surgery, as the surgical team recommended in 2016, I'd most probably be in the same situation as my friend, albiet two years further down the monastic route. As it is, I had seven years in which I lead a full life on my terms. My surgeon intimated I was mad having HiFu in the first place as this was why I was now in this position, but I see it as having gained seven years worth of a full life. I was reminded of when my mother was advised to stop drinking and go on wharfarin in 2007. She said that she was 82 and would rather enjoy what time she had left.
I think I am a tad unusual in that I am not in the least bit scared of death. I am more scared of a life that is bland and dull. I'd rather take my chances and live with my choices. My friend who had the op told me one of his mates, who had a normal prostate removal (mine is more difficult due to HiFU), has been incontinent since, there are no guarantees that I wouldn't be in the same position. From the surgical perspective, if I am alive in five years time with no re-occurance, it's job done.
I have come to the conclusion that Prostate cancer will remain a major killer of men until there is an option where your ability to have sex is unaffected. I asked the surgeon what would happen if I simply ignored the situation. He said that it would be 2-5 years before I saw any symptoms, by which time it would have invaded my bones and I may have another 3-7 years, depending. He seemed horrified that I'd asked the question. It is an option but it helps me make an informed decision. It is not an option I will consider, I just wanted to know. I am swinging strongly towards radiotherapy but I am still thinking about it and I am cross as I cannot get all of my questions answered in one hit. It all adds to the stress and anxiety. The NHS needs to get it's act together and get these teams working together, speaking to patients together and supporting them. Telling patients that difficult decisions are 'no brainers' does not help.
I know reading this is pretty hard for some. I know some will want to ring and chat and offer support. To be honest, I am not really in the mood to discuss too much with anyone. In fact, I am actually OK on one level. I am getting on with all the things I have to and I am managing my anger and anxiety. I'm getting everything in order. I am finishing off the False Dots album and working towards our launch and gigs in September and November. As to the other stuff, I am lucky. I have a strong partner who is supporting me and who is not judging me. I am one lucky S-O-A-B in many ways.
However this washes out, it won't be great. It will be the lesser of two evils. Whatever choice, no matter how moronic others may judge it, I will live by it. As with the HiFU decision. My surgeon may think I was nuts, but I am happy I did it. In life nothing is set in stone.
--- About this feature For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life. For those of you who aren't, here's a quick summary. I'm 60 years old and in October 2011 I had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I was put on a program of active monitoring. In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0, February 2015 it was up to 5.5 and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine. My two latest ones in February 2022 was 6.7 and October 2022 was 6.6 was stable. My MRI in March 2022 showed 'a change' so I am now awaiting a biopsy. I had a PSA test in late March which also showed a marked increase to 10.3. I had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSa test in June saw a rise to 12. I've seen the surgical and oncology team and am making my mind up as to what I choose.
Things are not great but they are not dire either.
I've no symptoms apart from needing to wee quite regularly and sadly for a few people, if I'm gonna die soon, it (hopefully) won't be from Prostate cancer. Got the picture?
I would have probably posted this blog last week, but I had dedicated the blog to the Mill Hill Music Festival diary for the duration of the festival, so regular features did not appear. Regular followers of this feature will know that I had some less than welcome news in May. The HIFU team at UCLH had told me that in light of an aggressive development in my prostate, I was now going to need either surgery or radiotherapy. This was dependent on the result of a PET scan. This was required to ascertain whether the cancer had broken out of the Prostate.If it had, then the option would be hormone therapy to manage the condition. I was passed to the Oncology department of The Royal Free for a consultation and told that the PET scan would be arranged withing 2 weeks. An appointment with the Oncology team was arranged for Tuesday 13th June. I was advised that the PET scan would be done before this and the surgery team would book an appointment once the results were available.
The only problem was that the PET scan wasn't booked. Apparently the doctor who raised the order 'made a mistake' and the order expired. This meant that I hadn't had a PET scan by the time I saw the team at the Royal Free. I am not one to sit around waiting. I had been actively emailing and phoning, all to no avial. The team at the Royal Free saw me, laid out the options. If it had spread I'd be under them having a life on hormone therapy. This would hopefully keep the cancer at bay, but is in effect chemical castration, as prostate cancer is a hormone driven cancer. If it hadn't, I'd have six months of hormone therapy then six weeks of intensive daily radiotherapy. After that, it would take up to a year for my hormone levels to return to normal. The side effects are a 1-2% chance of a radiuotion linked cancer in 10-15 years. There is also a 30% chance of incontinence/impotence/infertility as a lasting effect.
The Royal Free said they'd chase UCLH for the PET scan. Eventually I got a pet scan on the 15th. This involves being injected with a radioactive dye. I was informed that it was completely safe but I should avoid pregnant women and children for a minimum of six hours, as I could damage them. Once I'd been injected, I had to wait 90 minutes for the dye to work it's way around my body, then I had the scan. It took nearly an hour and was not particularly comfortable or pleasant, but it is a necessary evil.
The waiting for the test and the cock ups with the booking had caused me a significant degree of stress. Once I had the scan, I then had to wait until the following Tuesday for the results. In the meantime I'd received the results of my latest PSA test, up from 10.6 in March to 12. All in all, my anxiety levels had risen to a very high level. In some ways I was glad to have the festival to think about. The PET scan will detect other, non related cancers as well, so I was actually very paranoid about the matter.
On Tusesday UCLH called to book a surgical appointment. They could only offer me Friday last week, which was a day I was fully committed to the festival, so I deferred until this coming Friday. I was told the appointment was at 9am. I then received a follow up call. Because I'd had HIFU, the procedure was more complicated and I needed to speak to a surgeon qualified to do the procedure. The appointment was shifted to noon. I asked about the PET scan results. They said they were in but couldn't tell me. This was rather frustration. On Weds morning, I received an email to say that it was good.
With this, my anxiety levels returned to normal. In some ways, I'm lucky. My MRI was originally due to take place in July, so I am ahead of the game. It has taken me three months to get to the position of having my consults, as biopsys and PET scans were required. I am ahead of the game, but I have to say that I am not happy with the bureacratic cock ups and the talk of 'backlogs'. I have always been of the opinion that the NHS was good at dealing with serious issues. I am starting to think this is no longer entirely true. My advice is to make sure that you are not fobbed off by the bureaucrats. It is your life. The medical staff are wonderful, but to the people scheduling appointments etc, you are just a number.
--- About this feature For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life. For those of you who aren't, here's a quick summary. I'm 60 years old and in October 2011 I had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I was put on a program of active monitoring. In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0, February 2015 it was up to 5.5 and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine. My two latest ones in February 2022 was 6.7 and October 2022 was 6.6 was stable. My MRI in March 2022 showed 'a change' so I am now awaiting a biopsy. I had a PSA test in late March which also showed a marked increase to 10.3. I had an MRI scan that showed 'significant change'. This lead to a biopsy that indicated a tumour of 4mm that had a gleason score of 4+4. A PSa test in June saw a rise to 12. I've seen the oncology team and am awaiting a visit to the surgical team to discuss the next step. Thnis are not great but they are not dire either.
I've no symptoms apart from needing to wee quite regularly and sadly for a few people, if I'm gonna die soon, it (hopefully) won't be from Prostate cancer. Got the picture?
One piece of advice I will give before I start. Whenever you have a biopsy for cancer, try and make sure you have someone around who can support you if the news isn't good. There is literally nothing worse than feeling isolated and alone in the face of bad news. That is the biggest lesson I've learned on this journey.
So to recap. On Friday the 12th May, I had a prostate biopsy, following a worrying MRI scan in March. At 11am today, I was scheduled to receive the results. I have been expecting bad news. The MRI scan and the PSA test result told me that things were very unlikely to be good. Last night, I was feeling very anxious. I dealt with this by drinking a couple of bottles of wine. Sensible? Maybe not, but I simply didn't want to spend the evening soberly reflecting on what may happen. I had hoped to arrange a band rehearsal, but sadly the guys were unavailable. There was no football on the TV and I really wasn't overly interested in any of the programs, so I listened to Country Joe and The Fish and drank some plonk.
When I got up, I had some porridge, dropped my daughter off for walk, took the dogs to Mill Hill Park and enjoyed the sunshine. It was wonderful. All I could think was "It's a fine day for a hanging"
I got back, made a cup of tea, got the papers and awaited the news. As ever, the call was fifteen minutes late. The samples had been analysed. There were two areas of concern. In one area, the Gleason score was 7 (4+3) and in the other it was 8 (4+4). The scores mean the following
I have to be honest, this was worse than I expected. I assumed that there may be a couple of areas of 4+3, but the 4+4 was a shock. So we then discussed treatment options. The first thing is to have a PET scan to ascertain whether the cancer has spread outside of the Prostate. If it has, then the options are not quite so good. Given the location and state, this looks unlikely and I was advised this was precautionary, but then that was what I was told when I had my first PSA test.
Assuming the PET scan is OK, the options are as follows. I will have the choice of a radical prostate removal or hormone therapy followed by radiation therapy. Doctors from each team will speak to me in the coming days and weeks. I am likely to commence treatment in the next 1/2 months. That is where I stand.
This journey has had some ups and downs. This is the worst day so far. I cannot pretend that I am anything other than devastated. Right now, all I really want is my own company. Being positive, it is extremely likely that the cancer can be completely removed and dealt with. I am likely to have a whole range of unpleasant side effects, but I will not die. Life will most likely change and not for the better. But I have not been given a terminal diagnosis. The cancer is unlikely to have spread and I do have options. It is still more likely that I will die with it rather than from it. My early diagnosis has not spared me anxiety, but it has, most likely, ensured that it won't limit my lifespan.
Right now, I need to process this news. In the bigger scheme of things, I am OK. Today is a bad day, but tomorrow I'll have got my head around it. If you see me today, talk about the weather, the football, anything but this. Tomorrow is a different day.
I make this promise to you, dear reader and myself. Whatever happens, I will enjoy life, tomorrow my head will be in the right place. Just not today. Today is a day that I could do without. Now please leave me alone with my thoughts.
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--- About this feature For those of you who are regular readers and have read the previous posts on Cancer, there's what this is all about. I write this blog because knowledge is power and if you know what you are dealing with, you have more weapons in the locker to fight it. It is a personal view, I'm not medically qualified. This is for the sole purpose of information for those who are interested.This is the latest installment in my occasional series about how I'm adjusting to living with a big C in my life. For those of you who aren't, here's a quick summary. I'm 60 years old and in October 2011 I had a prostate biopsy following two "slightly high" PSA tests - 2.8 & 4.1. The biopsy took ten tissue samples and one of these showed a "low grade cancer" which gave me a 3+3 on the Gleason scale. I was put on a program of active monitoring. In early February, I got the results of the a PSA test - down to 3.5 and an MRI scan which found absolutely nothing, two more tests in 2012 were at 3.5 and 3.9, in 2013 my test was 4.0, Jan 2014 was 3.8, August 2014 was 4.0, February 2015 it was up to 5.5 and my latest in August 2015 was down again at 4.6. In October 2015 I had a transperinial Prostate biopsy, that revealed higher grade cancer and my Gleason score was raised to 3+4 (Small mass + more aggressive cancer). On 22nd Jan 2016 I had HIFU (Hi Intensity Focused Ultrasound) treatment at UCHL). My post procedure PSA in May was 4.0 which was down, followed by 3.7 in August, and 3.5 in October which means that the direction is positive . However in January the follow up MRI revealed "something unusual which requires investigation" After a follow up biopsy, it appeared this was nothing to worry about. My two most recent PSA tests were Ok (3.7 and 4.6) and an MRI scan in March was very positive. A PSA in October 2019 was 4.6, so stable and good news, the last in May 2020 was 5.45 a small rise, so worrying, however after a review against the most recent MRI, it was decided that this was fine. My two latest ones in February 2022 was 6.7 and October 2022 was 6.6 was stable. My MRI in March 2022 showed 'a change' so I am now awaiting a biopsy. I had a PSA test in late March which also showed a marked increase to 10.3. I've no symptoms apart from needing to wee quite regularly and sadly for a few people, if I'm gonna die soon, it won't be from Prostate cancer. Got the picture?
