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I've been wondering whether to post this or not for some time.
Here goes...
I've been a member of this forum for a long time and visit on most days whilst eating my breakfast, although I don't post very often. I apologise to those who know me and are hearing this news here... I've ridden with several of the old-school STW folks since 2002 🙂
Brief history:
53 years old, fit and healthy, NHS employee with no cancer in the family. Felt tired for some time but few other symptoms.
Medium length story cut short:
8 weeks ago I was diagnosed with prostate cancer. Following a PSA (374), several scans and a biopsy, it turns out that this is quite advanced and has spread to my lymph nodes. It is a terminal diagnosis and I'm receiving treatment to extend my life expectancy (30% at 5 years... But I'm planning on longer).
This is probably not the best time of life to make this decision but, inspired by the HT550 and GB Divide, I've decided I want to get back into cycling longer distances and maybe enter some events. I'd stopped doing that some years ago as my knees failed me. My crumbling knees don't seem so important now as they won't have to last as long as I originally thought.
I suppose I'm posting now for a couple of reasons: I'd love to hear from others who may be experiencing similar challenges. How have you trained or cycled long distances whilst battling a chronic health condition? Recommend some events for me to target. Inspire me!
Also, I would like to spread the word and raise greater awareness of prostate cancer. Mine could have been fixed if we'd caught it earlier. I've started a website/blog to chart my progress. I hope to build this into something really useful. I have no experience of websites, writing or blogging; initially the blog was just so I could keep my family updated without having to send a million texts every week. However, since starting the blog I have had loads of really positive comments about it. Everyone is telling me that my blog needs a wider audience; that my experience can help others and raise awareness.
So here it is andypshaw.co.uk
Join me for the ride 🙂
Are you going to get surgery and radiotherapy or is there some reason they are not possible?
Also my prostate cancer never got as advanced as that but I movred on to testosterone reduction drugs (leuprorelin and enzalutamide) a few months ago and my pedalling performance has taken quite a hit as a result.
I would say long distances are even less practical for me now, but that was never something I fancied that much. I have recently returned from an mtb Alps holiday which was great, though I wasn't able to climb like I expected.
This is very sad to read. You have probably seen my posts from a few years back when I teamed up with a few fellow sufferers, albeit we had all underwent successful (so far, and fingers always crossed..) surgery, to raise awareness of prostate cancer in younger men.
The original article is here :
we did a lot of fundraising and had decent follow up local press interviews and the like.
I know that treatment options have moved on a bit since then, and so hope that the doctors are able to investigate all possible options and perhaps find some better outcomes. Please feel free to PM me at any stage.
Sorry to hear about your diagnosis. You say you were tired but few other symptoms, so how could you have caught it earlier in the process? Have the experts given any clues there or is it just pot luck sometimes?
Are you going to get surgery and radiotherapy or is there some reason they are not possible?
Hi Greyspoke,
No surgery as it's too far gone. I'm on ADT to supress my testosterone and starve the cancer (initially Bicalutamide and now Zoladex injections). I start 18 weeks of chemo later in September, then radiotherapy afterwards.
My pedalling performance is well down and I've lost about 18bpm from my max heart rate. So no top end! However, I'm not working so can cycle more often 🙂
Thanks iainc. I'm going to revisit your posts now. I'm reasonably happy with the current treatment plan, but also awaiting contact regarding some trials. I think I would be happier with the prostate removed but the oncologist and urologist are against this saying, "It will not increase your life expectancy".
Hi Rickos,
PSA or DRE screening would have caught this earlier. They do this in some areas for all 50 year olds.
Also, maybe a greater alertness on my part to the symptoms. But a couple of rogue drops after urinating didn't seem that serious. I just assumed it was part of the aging process.
I did have another symptom that I did Google around, but it isn't currently recognised as a sign of prostate cancer.
I'll describe it here... er, how can I put this... ok... here goes...
I had noticed that over a period of time my spaff didn't quite spaff like it used to. It still felt good, and there was plenty in the tank, but the pressure wasn't quite there. From once being an almost volcanic eruption, it had become more like a lava flow. If you catch my drift. Again, I put this down to aging.
I do believe this was caused by the cancer. Maybe more research is needed for it to become a recognised symptom?
Dude. So sorry to hear this.
My us we have a group called I think the prostate buddy's who are all gents with or who have had it. Not sure if there's anything similar near you but thought it was worth a mention.
Spaff is definitely an under used verb.
Not much to say except I wish you the very best and if your clinicians deem it suitable, then ride your bike 🙂
Also to add that my father is now 4 years post diagnosis, and we're certain that he had it maybe 3 years before that. His was as widespread as yours, and had similar treatment. He's now on daily oral bicalutamide and quarterly Zoladex injections. His PSA today (literally, he's just messaged me this) is 40, down from 400+ initially. Barring a bit of tumour 'flare' when he gets the Zoladex, the inevitable testosterone suppression symptoms, and some mild urinary frequency, he's tip-top.
Life expectancy is getting better all the time, even for advanced disease.
Hi @Stanley
Hi Greyspoke,
No surgery as it’s too far gone. I’m on ADT to supress my testosterone and starve the cancer (initially Bicalutamide and now Zoladex injections). I start 18 weeks of chemo later in September, then radiotherapy afterwards.
My pedalling performance is well down and I’ve lost about 18bpm from my max heart rate. So no top end! However, I’m not working so can cycle more often 🙂
I retired a couple of years ago and started the hormone reduction about 5 months ago. So I was riding a reasonable amount and had some kind of baseline to look at. Yes indeed no top end - I went for a longish and hilly ride around Llyn Brianne on the roads last week and there was just nothing there for the short steep pitches - in fact I ended up walking some, which I definitely wouldn't have done before, even when unfit. Whether that is all in the legs or partly in the brain who knows (the drugs I am on report increased anxiety and tiredeness as side effects). For specifics, I could reach the high 170s, now I can just about get above 170 hr max, so not as large a reduction as in your case. But I am not sure whether that is more that a high max is more difficult to achieve.
Apparently you notice a reduction in red blood cell count quite soon after starting testosterone reduction, whereas the reduction in lean muscle mass will takes month or a year, so I have a bit still to go :(. I should go to the gym more to try to maintain muscle, but every time I think of doing that, another covid outbreak happens, and I really don't want to get that again.
Good luck with the chemo and radiotherapy mate, I have had the latter (which knocked me for six more than the surgery did) but not the former. I am afraid it is going to be a bit grim having them back to back, I hope you get some respite in between.
Interesting. Thanks for reply, Stanley.
@stanley I read this when you posted it but I'm a friggin coward with these threads, even my own much of the time.
Nothing to add other than I'm trying to figure out if I can cycle in some modified slippers. Long story.
I wish you the very best and some of the threads I was pointed to on here started by people on their own journeys with cancer were bloody amazing to read.
I might have the name wrong but "braveheart's**" thread was incredible.
** Genuinely sorry to cause offence if I have the name wrong which I bloody know I do! Annoying.
Best of luck with it all and go and give it hell and make that timeline go on for much, much longer.
I can’t add anything about the treatment, but if you get chance, it may be worth reading “Dead Man Running” about a British guy diagnosed with terminal prostrate cancer and then managing to get out and run lots of marathons and ultras. Not the same sport, but the endurance aspects may be relevant and there are useful contacts in the book.
I might have the name wrong but “braveheart’s**” thread was incredible.
** Genuinely sorry to cause offence if I have the name wrong which I bloody know I do! Annoying.
I can’t imagine any offence caused.
Bullheart / Petesgaff. STW Legend (RIP)
@OP - Watching your thread from a position of mild concern (age 49, tuning into knob problems, acquaintance just recently diagnosed). Keep strong 💪.
^^ Bullheart, Bullheart, that's it.
Thanks scuttler. He deserves to have his forum name remembered correctly.
Really sorry to hear your news. My wife is a urology cancer nurse specialist, i am sure if you have any questions that you have not been able to get answered she would be happy to answer them.
Sorry to read this OP.
Good luck with it all x
@stanley here's hoping that you die with prostate cancer than of it.
A sobering first post, good luck with the future from another chap who had it but appears to be free currently. (The second template biopsy removed all the cells, I'm not expecting to win Euro-Millions as I think this is the better result).
No pressure to reply mate but how are you getting on, how is the bike adventure planning going?
Thanks for the question... this cancer seems to have brought out a pinch of attention seeking behaviour in me!
I've recently completed 3x 2-day bikepacking rides in the peak District, a 100 mile road ride and took part in the HONC (Although I opted for the 75km rather than the full 100km route) plus the usual local stuff.
However, I think I've overdone it. I started to become mega-fatigued about 3 week's ago. I've not been sleeping well and I'm just not recovering properly. Plus I've been doing loads of jobs at home to get the house sorted for the next phase of treatment.
I begin the chemotherapy on Wednesday/Thursday of next week, so I'm trying to take it really easy at the moment so I can go into the chemo without being too run-down. Hopefully.
I'm determined to maintain some level of fitness during the next 6 months, and have almost finished getting the pain-cave ready. I've started looking at events for next year including the GBDivide (short-er route) and the Dragon ride.
I'll hopefully keep the blog better updated from next week too... andypshaw
@stanley, I read your blog and will keep track of your treatment journey and cycling challenges. It's inspirational and motivational stuff. I'm just getting my head around my own recent prostate cancer diagnosis. Mine is currently assessed to be low grade and not advanced and I've just had a consultation today to discuss active surveillance v treatment. I've decided to have a template biopsy to confirm the MRI & TRUS biopsy results. If that gives me some reassurance that there's nothing else of higher grade lurking, I think I'm inclined to go for active surveillance, at least initially. Obviously that might change if the template biopsy doesn't go the way I hope! Best of luck with your treatment, I will keep following your blog!
You've been busy Stanley! Great stuff mate.
Sounds like a good idea to build up your reserves for the start of chemo. What torture devices are you using in the pain have, Zwift setup or such?
Best of luck with the template results mate.👍
Just listened tonight to the Gaby Logan podcast about her husband, Kenny’s, journey through prostate cancer, quite interesting listening.
@blokeuptheroad
Thanks for the kind words. I hope your biopsy brings some good news. I've found the nurses at Prostate Cancer UK to be really knowledgeable if you need to find out more or get reassurance about treatment plans. They are only a telephone call away... as am I!
@Poopscoop
I've freed up some space in a downstairs room that we have always used as a bit of a dumping/storage area for outdoor kit, bikes, etc.
I've moved a load of stuff out and built some shelves to tidy the rest away. The room will have a bike permanently set up on the turbo and will also allow plenty of room for resistance band workouts, yoga, etc.
The turbo set-up will be based around a Wahoo Kickr (it's currently been stuck with Evri for 2 weeks), old 40" TV, Apple TV for Zwift, Headwind fan and separate standard fan. I've also got an old amp, speakers, cd plyer and chromecast audio to cover the audio side of things. I've also got a chin-up bar, loads of resistance bands and anchor points.
I'm leaving myself no excuses 🙂
@blokeuptheroad Good luck with the template, keep wearing the surgical stockings for the recommended period. No pics though, thanks as I have my own!!
@blokeuptheroad
Thanks for the kind words. I hope your biopsy brings some good news. I’ve found the nurses at Prostate Cancer UK to be really knowledgeable if you need to find out more or get reassurance about treatment plans. They are only a telephone call away… as am I
.
@blokeuptheroad Good luck with the template, keep wearing the surgical stockings for the recommended period.
Thanks both
No pics though, thanks as I have my own!!
😂😳
I’ve decided to have a template biopsy to confirm the MRI & TRUS biopsy results
I don’t really understand why anyone bothers with a TRUS biopsy - you will always want to confirm/check the results with a template biopsy. It seems to me it’s just an unnecessary pain in the arse. Literally, of course.
I don’t really understand why anyone bothers with a TRUS biopsy
The TRUS should be obsolete as the MRI will be definitive, surely? Unless radiology are incompetent! 😉
I don’t really understand why anyone bothers with a TRUS biopsy – you will always want to confirm/check the results with a template biopsy. It seems to me it’s just an unnecessary pain in the arse. Literally, of course.
I didn't get any say in the matter, and didn't know any different as this is all a bit new to me! I'd had an MRI before the TRUS which had identified an 'area of interest' I was told by the radiologist that they used the MRI to accurately guide the biopsy needle to these areas.
The TRUS should be obsolete as the MRI will be definitive, surely? Unless radiology are incompetent! 😉
From my understanding the MRI can ID the presence of a tumor and the staging but a biopsy is still needed to assess the grade/agressiveness of it?
I read your blog and will keep track of your treatment journey and cycling challenges. It’s inspirational and motivational stuff.
+1 this and last blog your pain cave efforts shaming me for being lazy - today not cleaning up an outdoor space like I was supposed to. It’s so inspiring that you achieve so much whilst carrying the issues you have.
@stanley, I did something similar to you, I tried to get fit and entered an event (Bristol Bikefest solo 12 hr) as something to work towards after my operation. As it happened, I needed radiotherapy as well but that ended up being shortly after Bristol, and I got quite fit for it. In fact, I overdid it as I also tried to lose weight, but the operation and recovery lost me more weight and I ended up too skinny. Also, I was on some hormone suppressing drugs during that period (not after) and didn't notice much of a change, unlike now (more powerful drugs, and for longer). That was all 8 years ago, during the intervening time until a few months ago I was on surveillance but no medication.
Make sure you don't overdo it while having chemo and radiotherapy, I am sure you have discussed it with your consultant but your immune system will be suppressed so you don't want to go too far (but you will probably find that isn't an option). A 5km walk a day was as much as I could manage during radiotherapy. I don't think it did anything for my fitness as such, but to me it felt important not to get into an invalid mentality and to keep mobile.
But the good news is, the weakness you will feel is temporary, if you got fit before you will be able to bounce back quite quickly. Though I am guessing you will remain on the meds, so you will still have the effects of them do deal with (which I didn't back then).
Keep your chin up, I am sure it is the same for you but I see people in far worse overall states of health than me when I visit hospital (the excellent Velindre Cancer Hospital in Cardiff), and that makes me feel thankful that I don't have all the extra issues they have.
For a few weeks before reading this thread I think I've noticed a change in how often I need to pee - or feel like I do. It's more often, and for smaller pees. I'm going to get checked.
I didn’t get any say in the matter, and didn’t know any different as this is all a bit new to me!
I was in the same boat, but now having had both, I don’t think I’d be happy to have the TRUS again. In my case the TRUS was aimed at a spot identified by MRI, came back negative. Then what? What explains high PSA? Look elsewhere with the template (as it ‘appens that was negative too, so the mystery continues). In my (obviously amateur) view I should have had the template straight away. I see some clinics agree with me and only do template.
Round 2 of chemotherapy for me today.
PSA isn't coming down as much as hoped 🙁
Updates here if interested...
The blog
And get your PSA checked out!