I can't remember when I last posted on here other than when responding to another chaps post and thought it was about time I gave you a brief update on what's been going on lately.
I'll take it for granted that most of you have never read anything I've posted in the past, particularly as most were in the GOOD old days of the previous forum.
Just for the record a brief summary of how it all started and progressed for me:
2006 PSA on the move, two biopsies but nothing found but PSA Free and Total said otherwise but changes to lifestyle and diet appeared to keep things under control until
2015 HoLEP carried out and low grade Gleason 6 found and carried on life as I had for the previous 9 years.
2022 to 2025. Under the care of a Uro who just kept an eye on things and dealt with my kidney issues as and when required. All this suited me fine until he told me he wanted to biopsy me as it was almost 20 years since my last one. I asked why as everything was ticking over nicely i.e. PSA still hovering around 2.6 with the occasional bounce up to 3 and then back again. Slight increase in size of tumour he says "what, all of 2mm in ten years" I say, so you can stick your biopsy plans for the time being. A bit of a falling out ensued and now with another Uro who actually listens and respects my views on my prostate health and where I expect it to go in the next few years.
However, she would still like me to be biopsied and seeing as I liked her brand of approach to my prostate health I agreed and in the meantime she referred me for a PET scan, whole body bone scan, up to date PSA test and MRI prostate. a week after these scans and test she rings me and cancels the biopsy, whoopee I think to myself, a reprieve from that 8 inch long needle.
She and the MDT are confused as my scans are contradicting each other, so a different approach was made to determine what is going on as my bone scans found "highlights" on my spine at L5 (all historic), a couple on my ribs (again all historic) and some "highlights" on my skull vault (again historic). The PET scan highlighted an area on my pelvis (guess what, yes, historic) but nothing else.
So for good measure I've been referred to another consultant who specialises in finding primary cancers that are causing they secondaries in my bones, who scheduled a full bloods workout of 28 individual tests, along with a colonoscopy, gastroscopy, CT Colonoscopy, CT from neck to groin, MRI skull and another MRI prostate. All this and I'm asymptomatic and have been for decades.
I'm certainly getting a through going over and believe it or not I'm enjoying the journey and to cap it all I received a letter from my lady Uro last week informing me that my latest MRI prostate is "clinically insignificant" which means they are deffo not looking for a secondary emanating from it. Looks like the biopsy road has been closed for the time being.
So, for the foreseeable future I'll continue to sit back and enjoy the ride and work on the principle that I'm not going to die from PCa rather than from it, assuming that is the suspected secondaries turn out to be from a primary yet to be found which may eventually lead to my being shuffled off this mortal coil in the next few years but that's another story.
Keep well guys and stay positive.
Edited by member 07 May 2026 at 11:23
| Reason: typo
Roger |
User
When you say "historic lesions" are they no longer active?
Is all this being done on the NHS?
User
Rogcal ,good to see you on here and doing okay ,if that's the right word.
Thanks Chris
User
Good to see you here again, Roger, remembering you from the ‘olden’ days.
Best wishes. Janet
User
Hello, Roger
I'm not medically trained.
It seems prostate cancer is not a concern. You're nearly 80 years old with a PSA of 3 or less, which is well within the normal range. Your appear to have a Gleason 6 (3+3) area that has progessed 2mm in 10 years. As you are probably aware a lot of experts, including Dr Scholz, do not class 'true' Gleason 6 as cancer.
https://youtu.be/a0sjUallZQU?si=222MsOzAkSM8sKke
Is it the bone scan that appears to be the bone of contention? (Excuse the pun)
I was Gleason 9 (4+5) with capsular breach and T3a staging. I had a PET scan which showed anomalies in bones in my lower back, pelvic area, and legs. A subsequent bone scan showed that these lytic areas were due to other non cancerous disorders.
I ended up having RARP and, touchwood, my PSA has remained undetectable.
There have been several blokes on here who've had highlights on scans that have had not been prostate cancer related.
I hope the results of your various tests and scans show nothing untoward.
Good luck.👍
Edited by member 07 May 2026 at 09:40
| Reason: Additional text
User
Yes, all carried out by the NHS and as for the bone lesions there is nothing to indicate that they are recent however, I expect the next set of investigations will include bone biopsies.
Being asymptomatic and with no history of bone pain in my body, other than athritis related discomfort which has been present for decades, the next few months are going to be interesting.
Roger |
User
Hello Roger, from another long-time member. You appear to have done well when you consider where you are so many years after your treatment. However, good that you have check-ups as sometimes PCa can even rise up again many years later, even in a more aggressive form. From original diagnosis up to my first HIFU my Gleason was always 3+4. However, the biopsy before my second HIFI showed 4+3, denoting that when it came to cancer cells, the more advanced cells were now in the majority. Hopefully, neither you nor I will need HT but that becomes more discretionally if/ when the disease develops further as we get into our eighties and nineties.
Barry |
User
Another update on progress of the tests I've been subjected to since the begining of the year.
To summarise, my Uro consultant felt I should have a prostate biopsy since my last one in 2006 which I was against having but before that took place I underwent a Pet scan and whole body bone scan which threw up some anomalies which prompeted the MDT to ask for more scans before the biopsy took place.
So, after several MRIs and CTs, some with contrast my Uro sent me a letter stating my prostate lesion was "of no clinical significance" but the search for an unknown primary would continue, as the CTs and MTIs were showing some inconsistancies in my skull i.e. some questionable lesions.
The Oncologist who had initiated all the tests decided one more MRI with contrast of my skull was called for which would be compared with the one done 3 months previously and low and behold no change which meant an end to any further tests or so I thought.
Yesterday a call from the hospital to advise me the MDT were not convinced the lesions in my skull vault were not sinister and my case has now been referred to neurolgy for a possible skull biopsy.
This is where I call a halt to any further tests unless they are prepared to carry the biopsy out under a local anaesthetic due to the fact that my last GA almost killed me and being now 23 years older (and infirmer) I'm not prepared to take the risk and would rather live with what is going on with my skull.
Being totally asymptomatic has been a constant fact throughout and during the run up to these tests, leaving me with the belief that everything they have regarded as sinister is in fact historical and benign.
One thing that has come out of all these tests (I forgot to include the gastroscopy, colonoscopy and virtual colonscopy which wrecked my gut biom and exacerbated my slow transit constipation to the point of severe compaction), is the fact that the little pussy cat residing in my prostate is still a little pussy cat, hallelujah.
Good luck to you all and keep positive and smiling.
Edited by member 01 Jul 2026 at 14:40
| Reason: Not specified
Roger |
User
Hello, pleased you're still here and going forward works out ok
I note your comment on old forum. I'm in library now and see they have a coffee morning come afternoon. I'm keeping a low profile.
Ray
User
With the way your PSA has advanced, I can understand why oncologists felt there must be some cancer somewhere. It's reassuring that they have not positively found any cancer, although the tests have caused problems and further concern. I understand your reluctance in having a biopsy of the head so maybe just normal monitoring will serve for at least a few years, if you so decide.
Barry |
User
Thx Barry and Ray.
Just to clarify one point, my PSA has remained pretty much unchanged since 2015 apart from shortly after my HoLEP when it was as low as 0.5, so very happy it has remained hovering around 2.5 for a decade.
The occasional rises to around 2.8 to 3 are down to the immense straining I do when my slow transit constipation co-incides with when I have the PSA blood test. I suppose other guys with the same issue may be tempted to explain these ocassional rises in PSA down to bike riding or to much shagging but I'm not at all like that, honest,
As for my longevity of at least a few years, I have a goal to acheive and that is to reach the age at which my father passed away from PCa or better still surpass it. He was born in 1902 and died in 2000. Just another 20 years to go then. :)
Roger |
User
In my consultant days the theme was later on look out for lump and bumps rather than psa increases. Perhaps in your case that translates to areas of skull doubt. But?
Ray
User
Originally Posted by: Online Community MemberOne thing that has come out of all these tests (I forgot to include the gastroscopy, colonoscopy and virtual colonscopy which wrecked my gut biom and exacerbated my slow transit constipation to the point of severe compaction), is the fact that the little pussy cat residing in my prostate is still a little pussy cat, hallelujah.
As regards compaction, this sometimes happens to me as I have IBS. As we age the muscles that push out the stools weaken and we tend to strain which is not good. I have found something that helps me considerably and mention it as it may be of interest. I have fitted a Japanese style Bidet/Toilet in my bedroom en suite, (and plan to fit another in my bathroom). I have found that the electrically warmed seat coupled with spurts of heated water sprayed up my rectum, opens the pores, lubricates the passage and helps the stool pass out. In two years since installation, when necessary, this has worked mostly on one cycle but on a few occasions has needed a second cycle and three cycles on 2 occasions. This was an unexpected bonus, as I largely bought the toilet which is pumped, because it only uses between two and two and a half litres of water to flush and also reduces the amount of toilet paper, for the warm seat and certain other features. These vary a lot in price and features, some of which I didn't want to pay for so did not choose a top model. Because of my IBS, it was not subject to VAT. In some cases it is possble to fit a smart seat incorporating bidet and certain other functions but where this is not possible, the much better all in one option is usually possible albeit more expensive. Anybody considering needs to carefully research makes models and reviews.
Edited by member 09 Jul 2026 at 14:50
| Reason: Not specified
Barry |