Prostate cancer and the under 50’s..

I was only thinking the other day, I'm now older than my dad was when his prostate cancer was in remission. Sadly he died 4 years later from bone cancer. I do keep on top of checks though and my PSA was only 0.89 last month.

Rest of me is falling apart mind 😉

It’s a horrible disease that can catch up unawares on us all. Good you are keeping a check on things 👍

I need to get a blood test again - no underlying issues but on medication that can raise PSA

My PSA is now down from 374 to just under 5.
The treatment has been brutal though. Get checked out fellas 👍

54 years old btw

Yep. Get your walnuts flicked guys. Nobody ever died of embarrassment.

stanley
Full Member
My PSA is now down from 374 to just under 5.
The treatment has been brutal though. Get checked out fellas 👍

54 years old btw

stanley, you were in my thoughts when I put up the OP, and I was hoping it wouldn’t be troublesome to you.

Good news @stanley, hope you've been left capable for thinks that you enjoy. Mines a steady 11 to 15 at the 6 month checks. I'm no longer going to Urology for clinics, GP is in charge of monitoring with an instruction to refer if the level of PSA rises significantly.

Get your walnuts flicked guys.

I think that's a private medicine extra Harry. 😀

Some good positive stories, great to hear 👍. I have my 9 year check in a week or so, always nerve wracking few days but time does heal, to an extent.

Surgery was, so far, a life saver for me, though not without ongoing issues. Cannae complain tho !

Yep. Get your walnuts flicked guys. Nobody ever died of embarrassment.

Very much this

@iainc

stanley, you were in my thoughts when I put up the OP, and I was hoping it wouldn’t be troublesome to you.

Thanks Iain. I'm always talking about it! We need to keep spreading awareness of this disease 👍

@Sandwich

Sounds like you've probably been through a lot too. All the best mate 👍

My PSA bounces between 7 and 10.  I was diagnosed last year, 58 at the time, no symptoms.  Mine is grade 1 (Gleason 7) and low volume so I have opted for active surveillance in consultation with the urologist. Currently having 3 monthly PSA tests and am due another MRI scan on the anniversary of my diagnosis later this year. Not sure if that MRI is a one off, or an annual thing. Very glad it was found and that it is being monitored but I live with low level anxiety about it, especially around PSA results time!  Interesting statistic. The likelihood that any male forumite reading this has prostate cancer is your age as a percentage. 60 years old? 60% chance you have it. However many of those that do have it will have a less aggressive very slow growing type and may never know or have issues with it. Some may of course have more aggressive cancer that needs urgent treatment, so get to your GP and ask for a test! 👍🙂

The likelihood that any male forumite reading this has prostate cancer is your age as a percentage

What? This can't be true? My week is bad enough with this kind of news...

The treatment has been brutal though.

I have had surgery, radiotherapy (both 8 years ago), and am now on testosterone reduction drugs. The latter are somewhat debilitating, certainly make me act my age (64) and then some, though a good excuse to get an ebike and ride like an old woman. But my PSA has been "undetectable" for a year since starting the hormone treatment. That was triggered by my PSA meandering up to above 1.5 ish since the radiotherapy, and scans showing some cancer cells lurking where my prostate gland used to be. Prostate cancer mostly doesn't do things quickly, which takes a bit of getting one's head round (ie knowing what you are probably going to die of, but it being years in the future).

All the best to fellow STWers with prostate cancer.

My PSA was about 4 then went up to 9. Had 2 biopsies(*) and multiple MRIs (private). Nothing found so back on PSA tests every 6 months. Private consultant recommended annual MRI. Now it's down to 4.75 which makes no sense to me, but OK. Consultant at NHS hospital v resistant to doing more MRI. I can see that there is pressure on resources but there seems to be a mismatch between info campaigns and what is actually available.

(*) One TR - staple gun up the arse, and one template. I'm not a urologist, obvs, but I don't see the point of the TR - too much uncertainty and chance of false negative.

What? This can’t be true? My week is bad enough with this kind of news…

Sorry, not trying to cause alarm. I can't remember where I saw this statistic and a quick Google isn't helping. I did just find a link saying that 80% of 80 year old men had detectable prostate cancer cells. A while ago though I did see a an article suggesting similar age/percentage links for younger (but over 50) men. I just can't find it though! I do remember though it said the majority of those that had it  would have less aggressive types that likely wouldn't cause them any issues.

(*) One TR – staple gun up the arse, and one template. I’m not a urologist, obvs, but I don’t see the point of the TR – too much uncertainty and chance of false negative.

I had both, the transperineal template biopsy to check there were no lurking higher grade nasties. Which it did, but not without complications. It was a general anaesthetic but should have been a day procedure.  Have a pee and you can go home. Except I couldn't and after 3 cups of tea and 3 glasses of water I was in agony. The nurse tried to catheterise me, It didn't work and was excruciating. I then had a 'special' catheter (think CamelBak drinking tube) administered by the emergency doc. Wow, that literally made me yell! I was admitted and they flushed my pipes and bladder with about 10 liters of saline over 24 hours before I could pee again. I was pissing blood and razors for a fortnight.  This (I am told) is a very rare complication. Lucky me!

Just had something similar, though thankfully less extreme, following sinus surgery (see my other thread). Now back home, and uncomfortable though the catheter was, at least I didn't have to get up at night to go for a pee :-). I take amitryptiline for other reasons, and apparently this makes prostate-related pissing issues worse. Wish someone had checked that when they prescribed it.

I keep meaning to get my new blog/website started. If anyone is interested in my early days following diagnosis, then it's all Here

I drifted away from the writing when chemo kicked in and I went a bit suicidal for a few months. I've managed to get through that now. Mostly!

My treatment has been: hormone therapy (Zoladex), chemotherapy (Docetaxel) and 20 sessions of radiotherapy to prostate and lymph nodes. It's all had loads of nasty side effects.
I agree with above; the hormone therapy grinds you away slowly. Lots of muscle loss, fat gain and extremely painful joints.

Hoping to get a few good years now. Could just do with having a bit less pain and a bit more energy!

At least I should meet my goal of retiring before 55 😅

but I live with low level anxiety about it, especially around PSA results time!

that bit never seems to go away, I am 7.5 years post surgery and need to get my 6 monthly tests in the next week..

@iainc, best of luck for a nice low number!

Grandfather, father, uncle and brother all had prostate cancer in their 40s, in two of them it was eventually a contributing factor in their deaths. I have the ATM gene, which unfortunately isn’t a cash machine half way up my thigh, but a very slight increase in likelihood of prostate, colon and pancreatic cancer, although if I do get it it’ll likely be quite aggressive. So now I’m in my mid 40s, I have 6 monthly PSAs and am booked into a medical trial that involves biopsies every other year, I’ve also been advised to take a baby aspirin every night.

Strangely, none of the other men in my family have the gene, so either it was an unlucky mutation, or I got it from my mum (who died from breast cancer, but ATM has no effect on that)

Best of luck sanername. I really don't envy you having those regular biopsies, but it sounds really important that you are on top of the monitoring, especially with that family history.

No cancer in our family; I'm the first.
Why couldn't I have been the first millionaire, or first spaceman?!

What they’re trying to work out with the ATM gene and prostate cancer is why people’s PSAs go shooting up, seemingly from nowhere. They don’t know if that’s because the cancers are very aggressive or if it’s because they don’t release any PSA for their initial growth period, hence the need for biopsies to see if anything’s there.

We do cancer big style in our family. We’re a bit famous for it. Still, there have been other blessings.

I was diagnosed at 49. PSA in the mid 20's, Gleason 8. Surgery failed to remove it all, it had broken through the capsule. Radiotherapy and 5 years of testosterone reduction drugs followed. 10 year survival was the best outlook I was given

I've now just reached pension age and am still riding, running and most importantly (for me at least) still here.

So get tested, but if you do get a diagnosis, don't give up!

@stanley Thanks.

Most of my problems now are from an over large prostate (20 times normal volume!). The cancer was removed with the first template biopsy (my lottery win at life that week), the second one confirmed my Gleason score was 6. The TURP in late 2020 was a fun experience, stay still while the spinal tap went in but kick the assistant hard due to reflexes. Then chatting away to the chap alongside me while the consultant bored me out. I have to be careful lifting things as it can cause a bleed from the prostate due to weakened blood vessels. Small bleeds are ok anything lasting more than a couple of hours usually requires a full panoply of tests and scans.

I regard my PSA level of around 11 as low after a chat with the nurse practitioner who was due to see a chap with a score in the 1000's later that day. Long term I aim to die with prostate cancer not of it.

interesting thread, not that I understand it. I am 49 this year, could count on one hand the amount of times I've been to the doctors in the last 20 years, that's not to say I don't have my aches and pains but have found that the GP isn't really that interested. I remember turning 40 and thinking I should get one of those over 40s health check but still not got round to it...

Are there symptoms, checks, warnings I should be looking out for? or should I be going to speak to the GP and asking for some testing to be done? Excuse my ignorance, any info would be great

Thanks 242dom for asking that, same question here.
I've never been offered any kind of testing for anything, so assume it's something you can just request?

Mind you, only finished chemo for lymphoma last week so not sure I want them finding anything else!

NHS has decent info :

https://www.nhs.uk/conditions/prostate-cancer/symptoms/

The one thing that isn't clear to me is how to get tested - is it just a case of asking your GP, regardless of no symptoms?

Those asking about testing and how to access it.
My primary symptom was an inability to go a decent time between pee breaks while driving or cycling. 40 minutes drive to work, go before I left and arrive busting or have to stop before arriving at the side of the road. First step is a PSA blood test which had me on the treadmill around 48 hours after the results arrived.
There will be the indignity of a (usually male) doctor checking out the state of your prostate manually. Relax and it doesn't hurt! Then a slew of tests on the bladder (wifi connected urinals are a thing) and prostate function (bladder filled with water). Nowadays if your hospital has an MRI scanner that will be deployed to check for cancer as the biopsies mentioned above are a tad stressful.
Ask older relatives if there is a history of prostate problems in the family, maternal and paternal sides of the family for me. Sandwich Jr is looking forward with some trepidation to his late 40's.

many thanks for the info, I will also take a look at the link above. Speedy recovery to all those with their issues above

Dom

The one thing that isn’t clear to me is how to get tested – is it just a case of asking your GP, regardless of no symptoms?

Yep, pretty much. If you're over 50 it should be fairly straightforward - your GP might want to have a chat first.

The PSA test itself (a blood test done by the practice nurse or phlebotomist) won't diagnose cancer, but an elevated score will trigger further investigations.

I would just like to say thanks for folk sharing their experiences. It can sometimes feel lonely struggling with a medical problem, or anxiety about a medical problem, and it really helps to know that others have experience and advice. Or just sympathy!!

I'm guessing that it's already been asked but can you get away with just the PSA test? For very personal reasons, there's no way I'd ever drop my trousers in front of a doctor ever again.

The PSA test is only one of a number of indicators. If you are not prepared to be examined by a doctor there’s not much point in even considering it…

Currently on a ward with 5 or 6 guys having treatment for prostate cancer. Full removal basically.

It's a horrid illness.

@salad_dodger My examination was in hospital, not in the GP surgery if that's your particular worry. You can ask for a chaperone to be present if you're uncomfortable.

I hadn't considered the chaperone option. Good idea Sandwich.

Currently on a ward with 5 or 6 guys having treatment for prostate cancer. Full removal basically.

Day case? It was the same with me, they did them in batches, I kept bumping into the same guys at subsequent clinics.

Hope it all goes well @Poopscoop.

I was lucky with relatively early diagnosis. This was 9 years ago and a lot has changed.

Pre surgery Biopsy suggested Gleason 7 (3+4) and surgeon offered removal by keyhole, within a few weeks privately, or a bit longer on NHS, and felt that it wasn’t necessarily that urgent.

I just wanted it out, so took the private route, subsequent pathology checking of the beastie showed it to have been rather aggressive and close to breaking out, which could have been a very different outcome.

Being in Scotland I had tremendous support from Maggies, with 121 counselling for me and all of my immediate family. At the regular drop in sessions I felt a bit of a fraudster, being surgically cancer free and many of those I was having a cuppa and a chat with were on a terminal path.

I count myself lucky to still be here, though the long term emotional and physical impacts will haunt me forever, hopefully that will be a long time..

42 here and currently 6 months in remission from Bowel Cancer myself...

They don't start routinely checking you until you're 60!!!

Check yourselves gentlemen (and ladies!)... Check yourselves...

My wife is a urology cancer nurse and was quite concerned when my flow changed about a year ago.

I had a raised PSA 3.9 followed up 3 months later at 2.9 so although raised no further action for now (50 yes old).

My dad had prostate cancer (removed prostate) so am going to try to get PSA checked again in a year.

For those with PSAs that bounce about a bit, she says that riding a bike can raise your PSA and she insisted on me not riding two weeks prior to the test to ensure it was as accurate as it can be.

One thing that has radically changed my toilet visits is taking Tamsulosin, it is for benign enlarged prostates and has allowed me to piss like a 10 year old again!

@mboy They're not slow with the notification for bowel cancer checks. The letter arrived the day after I turned 60!

@eskay I hope the Tamsulosin works for a good while, you'll then get Finasteride to add to it to reduce the enlargement rate (stand by for reduced sexual drive and ability). If your prostate doesn't respond to the drug and you want to keep the blighter you should get offered a TURP and you'll be able to empty your bladder fully again.