Health

[jgtuk]

16 minutes ago, Facecloth said:

I find there's so much conflicting information, because you're saying no cheese and eggs, other places saying they are fine. 

Yes, sorry for confusion, I was talking about my own personal experience, yours needs to be tailored to your own conditions. 
Your GP, or the hospital, should give you dietary advice, make sure you ask before discharge. Google is probably the best and worst place to look, as you pointed out, so much confusing (and often mis) information. 
Good luck. 

[Crinklyfox]

1 hour ago, Alf Bentley said:

Went to hospital on Tuesday, swapped my prostate (removed by a surgeon-controlled robot) for a urinary catheter and was discharged barely 24 hours later. 

 

The first 48 hours out were a bit tricky at times due to constipation (common side-effect of surgery & general anaesthetic, it seems), but thankfully my world-class talent for defecation is now back. Very little direct soreness from the surgery and feel very well generally, but the catheter causes sporadic soreness. I feel well enough to walk for miles in terms of surgery recovery, but at times the catheter makes it painful to even walk short distances.

 

Thankfully, the catheter is due to be removed in a few days. That will bring the prospect of likely urinary incontinence issues - just have to hope I'm in the majority for whom it is a temporary and/or minor problem, not the minority for whom it's more severe or long-lasting.

 

Then, the moment of truth will be the six-week review to see if they think they've eliminated all the cancer (PSA rating should be near-zero, if so ). The surgeon seemed optimistic that would be the case, meaning no further treatment in the short-term - but thought it pretty likely the cancer would be back within 10 years, due to it being an aggressive one. Just a case of getting regular PSA tests to hopefully catch it before it spreads, if so. It's a bit weird that you can still get prostate cancer without a prostate, but apparently it can return in surrounding areas that are left in place.

 

All the best to all going through this - and any other health trauma. 

 

Alf I had a catheter fitted once for only 24 hours and it caused some problems but they were temporary.  After the catheter was removed the doctor wanted to make sure that my bladder was working properly so I  was given a supply of water and asked to wait in the hospital.  Some time later my bladder released its contents with no warning, I hadn't felt the need to urinate before it happened.  This shook me a bit but perversely the doctor was happy.  He advised that it would take a while for my bladder to get back to normal and that I should urinate upon the slightest feeling of needing to do so.  This was good advice.  My bladder slowly regained its normal function, it took about a week but there were no longer lasting effects.  I was told this was quite normal.

 

One of my bowls buddies went through the same procedure as you last year and he's in pretty good shape now - hope things work out for you also.  All the best.

[Facecloth]

40 minutes ago, jgtuk said:

Yes, sorry for confusion, I was talking about my own personal experience, yours needs to be tailored to your own conditions. 
Your GP, or the hospital, should give you dietary advice, make sure you ask before discharge. Google is probably the best and worst place to look, as you pointed out, so much confusing (and often mis) information. 
Good luck. 

Thanks for advice. I'm hoping I can still eat egg and cheese. Can't lose all the fun food if I'm probably losing sweet treats.

[mozartfox]

9 hours ago, jgtuk said:

Appointment for 3rd April after speaking with GP again. 

Well done for pushing this.  

[mozartfox]

6 hours ago, Alf Bentley said:

Went to hospital on Tuesday, swapped my prostate (removed by a surgeon-controlled robot) for a urinary catheter and was discharged barely 24 hours later. 

 

The first 48 hours out were a bit tricky at times due to constipation (common side-effect of surgery & general anaesthetic, it seems), but thankfully my world-class talent for defecation is now back. Very little direct soreness from the surgery and feel very well generally, but the catheter causes sporadic soreness. I feel well enough to walk for miles in terms of surgery recovery, but at times the catheter makes it painful to even walk short distances.

 

Thankfully, the catheter is due to be removed in a few days. That will bring the prospect of likely urinary incontinence issues - just have to hope I'm in the majority for whom it is a temporary and/or minor problem, not the minority for whom it's more severe or long-lasting.

 

Then, the moment of truth will be the six-week review to see if they think they've eliminated all the cancer (PSA rating should be near-zero, if so ). The surgeon seemed optimistic that would be the case, meaning no further treatment in the short-term - but thought it pretty likely the cancer would be back within 10 years, due to it being an aggressive one. Just a case of getting regular PSA tests to hopefully catch it before it spreads, if so. It's a bit weird that you can still get prostate cancer without a prostate, but apparently it can return in surrounding areas that are left in place.

 

All the best to all going through this - and any other health trauma. 

 

Thanks for up date.  I am sure you will be fine. Statistics are heavily in your favor and on your side!!!

[mozartfox]

18 hours ago, Alf Bentley said:

 

Must feel good to have a quarter of the ordeal behind you. Another 3 weeks will soon be done!

 

I second your exhortation to "get it checked", but would add to do so even if your body does feel right - I'd had no change in symptoms before being diagnosed, a common problem with prostate cancer if no checks are done and it spreads to other body locations.

 

If you don't mind me asking, is your treatment a "radiotherapy only" pathway? I was only offered surgery or radiotherapy with hormone therapy, though that might've been due to it being an aggressive cancer (Gleason 4+5). I was initially favouring radiotherapy but switched to the surgery pathway after realising it would also imply 2-3 years of hormone therapy. I might have stuck with radiotherapy if it had only required 2-3 months of potential hormone therapy side-effects, but I didn't fancy 2-3 years of potential disruption (even if the disruption is minor for some patients).

 

The future's so bright, we've got to wear shades! 

Hello my Friend,

 

My treatment is Radiotherapy only (CHHips). I was diagnozed Gleason 3+4 (Grade 2).  So HT not required. BUT my older Brother had both treatments 2/3 years ago, this as I assume his Tumor was larger.  He is now in Remission!!

 

Before I decided to have a voluntary MRI at my cost, this to bascically double check matters (as my family as been wiped out with same cancer) my PSA was only 2.06.  Therein lies another anomaly attached to PSA results.  I suppose the lesson here is, if there are historical cases in your family, you need to be even more vigilant and push your GP for tests, especially if your nocturnal visits to the Toilet increase.

[The Guvnor]

9 hours ago, mozartfox said:

Hello my Friend,

 

My treatment is Radiotherapy only (CHHips). I was diagnozed Gleason 3+4 (Grade 2).  So HT not required. BUT my older Brother had both treatments 2/3 years ago, this as I assume his Tumor was larger.  He is now in Remission!!

 

Before I decided to have a voluntary MRI at my cost, this to bascically double check matters (as my family as been wiped out with same cancer) my PSA was only 2.06.  Therein lies another anomaly attached to PSA results.  I suppose the lesson here is, if there are historical cases in your family, you need to be even more vigilant and push your GP for tests, especially if your nocturnal visits to the Toilet increase.

Hi, interesting read. I receive annual PSA blood tests and was told they are looking for spikes in the PSA. May I ask did you have a DRE ? Again It was my understanding that a smooth prostate ie no lumps or bumps and a consistent low PSA pretty much prevents any further investigations. Alarming to hear you didn’t have any PSA spikes but still had PC.

Wishing you a complete recovery!

 

[mozartfox]

19 hours ago, The Guvnor said:

Hi, interesting read. I receive annual PSA blood tests and was told they are looking for spikes in the PSA. May I ask did you have a DRE ? Again It was my understanding that a smooth prostate ie no lumps or bumps and a consistent low PSA pretty much prevents any further investigations. Alarming to hear you didn’t have any PSA spikes but still had PC.

Wishing you a complete recovery!

 

Hi DRE’s, rather like PSA results are not an exact science.   Unfortunately it requires an MRI scan to establish if there is anything suspicious. Previous to my diagnosis , I had 3 PSA tests per annum plus 2 x DRE🫣.  I only ever saw one spike 4 years ago which was dismissed by a previous MRI.  It’s a bloody minefield Prostate Cancer.

[foxy boxing]

i had blurry vision in my right eye for a couple of weeks, thought it was due to the medication (sertraline) that i was on. went to the doctor who immediately sent me to the eye clinic at the infirmary, turns out i had a detached retina. had surgery at the eye clinic about a week later. they gave me a general anesthetic and i was awake while they operated on my eye which was a really weird experience. was falling asleep near the end of the surgery. now having to take 3 different types of eye drops.the doctor said the surgery went well. cant praise the staff at the eye clinic high enough. they do a superb job.

[Alf Bentley]

20 hours ago, The Guvnor said:

Hi, interesting read. I receive annual PSA blood tests and was told they are looking for spikes in the PSA. May I ask did you have a DRE ? Again It was my understanding that a smooth prostate ie no lumps or bumps and a consistent low PSA pretty much prevents any further investigations. Alarming to hear you didn’t have any PSA spikes but still had PC.

Wishing you a complete recovery!

 

 

Just to second what @mozartfox said, PC diagnosis is a minefield & DRE is a very hit-and-miss tool. I was told that the doc can't physically reach all of the prostate, for a start.

 

After I had a high PSA reading, I was given a DRE and the GP said my prostate seemed slightly firm (multiple potential explanations for this) but completely smooth. He thought there was only about a 25% chance that I had cancer - but the MRI revealed quite a large, aggressive tumour, but fully contained so no bumps...

 

While the MRI often gives a better idea one way or the other - and was pretty clear in my case, due to it being high-grade cancer - that's not always the case. Some MRIs don't give a clear answer - then only a biopsy will do that.

 

PSA readings seem to be a minefield, too. Different doctors set different thresholds for "high" - and a normal PSA level can differ from one bloke to the next (quite apart from there being other potential explanations for high PSA - e.g. benign prostate enlargement). The key seems to be identifying rises in the PSA readings of a particular individual, not necessarily an arbitrary figure - and then getting an MRI...then possibly a biopsy if the MRI is inconclusive.

[mozartfox]

6 hours ago, Alf Bentley said:

 

Just to second what @mozartfox said, PC diagnosis is a minefield & DRE is a very hit-and-miss tool. I was told that the doc can't physically reach all of the prostate, for a start.

 

After I had a high PSA reading, I was given a DRE and the GP said my prostate seemed slightly firm (multiple potential explanations for this) but completely smooth. He thought there was only about a 25% chance that I had cancer - but the MRI revealed quite a large, aggressive tumour, but fully contained so no bumps...

 

While the MRI often gives a better idea one way or the other - and was pretty clear in my case, due to it being high-grade cancer - that's not always the case. Some MRIs don't give a clear answer - then only a biopsy will do that.

 

PSA readings seem to be a minefield, too. Different doctors set different thresholds for "high" - and a normal PSA level can differ from one bloke to the next (quite apart from there being other potential explanations for high PSA - e.g. benign prostate enlargement). The key seems to be identifying rises in the PSA readings of a particular individual, not necessarily an arbitrary figure - and then getting an MRI...then possibly a biopsy if the MRI is inconclusive.

This sums-up prostate cancer detection perfectly.  The start point for checking is PSA. If it spikes push for an MRI and take it on there after. I hope these posts will alert all FT members to take care of themselves!!

[SpacedX]

13 hours ago, mozartfox said:

This sums-up prostate cancer detection perfectly.  The start point for checking is PSA. If it spikes push for an MRI and take it on there after. I hope these posts will alert all FT members to take care of themselves!!

22 hours ago, Alf Bentley said:

PSA readings seem to be a minefield, too. Different doctors set different thresholds for "high" - and a normal PSA level can differ from one bloke to the next (quite apart from there being other potential explanations for high PSA - e.g. benign prostate enlargement). The key seems to be identifying rises in the PSA readings of a particular individual, not necessarily an arbitrary figure - and then getting an MRI...then possibly a biopsy if the MRI is inconclusive.

Absolutely. It isn't strictly a biomarker and the limitations are clear, such as being organ-specific but not disease-specific which in the past has lead to false positives and overdiagnosis. However it does provide an early warning system for further diagnosis and I would urge anyone with rising PSA or above the national benchmark of 3ng/ml to put pressure on their GP for a DRI or ideally MRI scan. This was lowered from 4ng/ml in the absence of a screening programme. PSA can fluctuate naturally and certain activities can compromise the blood test results such as having sex or vigorous exercise 48 hours before. Key indicators are the velocity and the doubling rate. The size of the prostate gland should also be taken into account - a smaller prostate means that in terms of volume, the PSA figure could be more significant for someone with a prostate the size of a citrus fruit. There are other conditions that can cause PSA to rise rapidly, it doesn't necessarily mean that it is cancer, but it should then prompt investigation. Also be aware that a PSA test does not tend to be included in well man checks any longer. You have to request them. 

 

22 hours ago, Alf Bentley said:

After I had a high PSA reading, I was given a DRE and the GP said my prostate seemed slightly firm (multiple potential explanations for this) but completely smooth. He thought there was only about a 25% chance that I had cancer - but the MRI revealed quite a large, aggressive tumour, but fully contained so no bumps...

My GP could not find any abrasions either. He concluded that although the prostate was very enlarged he was 99% certain I did not have cancer and begrudgingly referred me for an MRI scan owing to the fact that I stressed that the PSA velocity was high (had risen from 3.3 to 4.3ng/ml in six months), and that there was a family history of the disease. Turned out my prostate isn't enlarged at all, in fact it is under sized (PSA density of 0.18) and that I did have prostate cancer. So the GP diagnosis was 100% incorrect. I was referred for an MRI scan in August 2022. The result was PI-RADS 4 (a high likelihood of clinically significant prostate cancer) T2aN0 (right posteromedial apical peripheral zone) meaning I had suspected stage 2 cancer and that all indications were that it was contained. As  result, I was referred for a TRUS biopsy, but due to machine failure, I had the trans perineal template procedure instead, which is more accurate. 

 

I then had to wait three and a half months on the diagnostic pathway to find out what grade and how aggressive the cancer was. The NICE guidelines are 28 days - this was 107 days after the MRI result! To provide some context, I tracked down my rogue Irish biological father in Dublin back in 2006. The first thing he told me was that every male in the family had experienced prostate cancer and that it was a very aggressive type (albeit the fact that prostate cancer is slow growing compared to some other forms of the disease). Understandably I was expecting bad news and I was fully prepared for that, but my results consultancy kept getting cancelled. After the sixth time, I jumped in the car with a bundle of letters and drove down to Urology. A very professional and empathetic staff nurse was aghast at the situation and arranged for me to see a doctor immediately. He sat me down and I nearly fell off my chair when they gave the results of the biopsy as Gleason 6 (3+3) (Cambridge Prognostic Group 1 Disease) which is the best possible outcome next to being told you don't have cancer and means that the cells look almost like normal. 

 

I can't account for why this has afflicted other males in the family so severely but not me. There are two possibilities. The first is that any cancer causing gene has skipped me and that this is merely coincidence. It is after all one of the most common cancers in the UK. There is no specific gene that we know of that is expressly related to prostate cancer, but many that cause it. Hold that thought. The second is that for the time being I have Gleason 6 cancer, but some unidentified genetic instability may yet cause this to evolve into a higher grade. My initial consultant wasn't in the least bit interested in the family history and certainly saw no relevance in the fact that my Father and Uncle were diagnosed treated in Ireland two decades ago far less, what went on before. He was only interested in the data and the medical evidence before him and the now, which is fair enough. The rest was conjecture. We can only go with what we know. 

 

I opted for active surveillance. At this stage there is no point in treating something that doesn't need treating although some with a similar grade have gone straight for brachytherapy or a nerve sparing prostatectomy to purge the cancer from the body. As one particular oncologist reminded me several times, it's not as much physiological but psychological aspect of active surveillance and some understandably don't want to countenance the idea of cancerous cells being in their body no matter how benign. If I elected for either I would almost 100% be cured. Active surveillance is relatively new and we still don't possess much data. However, overtreatment is undeniable and Gleason 6 tends to be something that you die with as opposed to dying of. Also worth adding here however is that 20-30% of biopsies can under sample. 

 

So I have my PSA checked twice a year. I no longer have face to face or even telephone consultancies as of this month, which I can only attribute to high clinical load, hence the frequent cancellations when I was on the diagnostic pathway. My PSA is currently 5.5ng/ml and although they are keen to point out the fluctuations along the way, I am also quick to remind them that this is an overall sustained rise. If it continues I will have another biopsy. I have a reasonably high pain threshold, but that was not something that I was particularly eager to experience again. My consultant that performed it who kept hollering "direct hit" and "bang on target" said that with an attitude like that, I'd have him out of a job in months. He liked to refer to it as "death by a thousand cuts". Pretty sure he hadn't detected my gallows sense of humour and it makes you wonder how many complaints have been filed against him in the past. I thought it was quite amusing. I have had two MRI scans since the initial one (the most recent in January of this year), and they all indicate stagnation and zero growth of the lesions which is consistent with Gleason Score 6. However that does not necessarily mean that the cells within are not undergoing change and eventually another biopsy is inevitable and warranted. 

 

Apologies for the length of this, but I'd just like to mention two more things. To those that have Prostate Cancer, I would highly recommend contacting the Institute of Cancer Research at the Royal Marsden Hospital. I volunteered for/participated in their  'Precision Medicine in Prostate Cancer' research study. I applied for and was refused genetic counselling by the NHS because my cancer hasn't metastasised, so I wasn't eligible (I thought the general idea of it was to prevent that in the first place). My DNA was sent to a lab in the states (one for the tin foil hat thread), to establish whether I was carrying any cancer related gene and to assist their research into better understanding of the disease. As I said earlier, there is no specific gene expressly related to prostate cancer but there are some very nasty ones that can cause it such as BRCA1 and BRCA2. I wanted to be sure that these were not going to be passed on to my daughter which can also cause ovarian and breast cancers for example. The coding regions of genes were sequenced using an oncogenetics methodology and over 40 were tested for. None were identified although it is important to understand that this is based on our current knowledge and I suspect that there may be an undiscovered genetic link to my cancer. I don't know whether the project is still currently underway but for those in the UK it is certainly worth pursuing depending upon diagnosis. 

 

Secondly, I would urge anyone reading this over the age of 40 to regularly check their PSA - and to remember, an elevated figure does not necessarily mean that you have prostate cancer, but it will promote further investigation. This is a stealth killer that tends to be asymptomatic until it escapes. Knowing that it's there beforehand is half the battle won. 

[Izzy]

The joys of booking travel insurance insurance and declaring your pre existing medical conditions.

 

4 days in the USA?

 

That'll be £450 please 

[leicsmac]

4 minutes ago, Izzy said:

The joys of booking travel insurance insurance and declaring your pre existing medical conditions.

 

4 days in the USA?

 

That'll be £450 please 

The power of Social Darwinism in action over there, mate.

[mozartfox]

13 hours ago, SpacedX said:

Absolutely. It isn't strictly a biomarker and the limitations are clear, such as being organ-specific but not disease-specific which in the past has lead to false positives and overdiagnosis. However it does provide an early warning system for further diagnosis and I would urge anyone with rising PSA or above the national benchmark of 3ng/ml to put pressure on their GP for a DRI or ideally MRI scan. This was lowered from 4ng/ml in the absence of a screening programme. PSA can fluctuate naturally and certain activities can compromise the blood test results such as having sex or vigorous exercise 48 hours before. Key indicators are the velocity and the doubling rate. The size of the prostate gland should also be taken into account - a smaller prostate means that in terms of volume, the PSA figure could be more significant for someone with a prostate the size of a citrus fruit. There are other conditions that can cause PSA to rise rapidly, it doesn't necessarily mean that it is cancer, but it should then prompt investigation. Also be aware that a PSA test does not tend to be included in well man checks any longer. You have to request them. 

 

My GP could not find any abrasions either. He concluded that although the prostate was very enlarged he was 99% certain I did not have cancer and begrudgingly referred me for an MRI scan owing to the fact that I stressed that the PSA velocity was high (had risen from 3.3 to 4.3ng/ml in six months), and that there was a family history of the disease. Turned out my prostate isn't enlarged at all, in fact it is under sized (PSA density of 0.18) and that I did have prostate cancer. So the GP diagnosis was 100% incorrect. I was referred for an MRI scan in August 2022. The result was PI-RADS 4 (a high likelihood of clinically significant prostate cancer) T2aN0 (right posteromedial apical peripheral zone) meaning I had suspected stage 2 cancer and that all indications were that it was contained. As  result, I was referred for a TRUS biopsy, but due to machine failure, I had the trans perineal template procedure instead, which is more accurate. 

 

I then had to wait three and a half months on the diagnostic pathway to find out what grade and how aggressive the cancer was. The NICE guidelines are 28 days - this was 107 days after the MRI result! To provide some context, I tracked down my rogue Irish biological father in Dublin back in 2006. The first thing he told me was that every male in the family had experienced prostate cancer and that it was a very aggressive type (albeit the fact that prostate cancer is slow growing compared to some other forms of the disease). Understandably I was expecting bad news and I was fully prepared for that, but my results consultancy kept getting cancelled. After the sixth time, I jumped in the car with a bundle of letters and drove down to Urology. A very professional and empathetic staff nurse was aghast at the situation and arranged for me to see a doctor immediately. He sat me down and I nearly fell off my chair when they gave the results of the biopsy as Gleason 6 (3+3) (Cambridge Prognostic Group 1 Disease) which is the best possible outcome next to being told you don't have cancer and means that the cells look almost like normal. 

 

I can't account for why this has afflicted other males in the family so severely but not me. There are two possibilities. The first is that any cancer causing gene has skipped me and that this is merely coincidence. It is after all one of the most common cancers in the UK. There is no specific gene that we know of that is expressly related to prostate cancer, but many that cause it. Hold that thought. The second is that for the time being I have Gleason 6 cancer, but some unidentified genetic instability may yet cause this to evolve into a higher grade. My initial consultant wasn't in the least bit interested in the family history and certainly saw no relevance in the fact that my Father and Uncle were diagnosed treated in Ireland two decades ago far less, what went on before. He was only interested in the data and the medical evidence before him and the now, which is fair enough. The rest was conjecture. We can only go with what we know. 

 

I opted for active surveillance. At this stage there is no point in treating something that doesn't need treating although some with a similar grade have gone straight for brachytherapy or a nerve sparing prostatectomy to purge the cancer from the body. As one particular oncologist reminded me several times, it's not as much physiological but psychological aspect of active surveillance and some understandably don't want to countenance the idea of cancerous cells being in their body no matter how benign. If I elected for either I would almost 100% be cured. Active surveillance is relatively new and we still don't possess much data. However, overtreatment is undeniable and Gleason 6 tends to be something that you die with as opposed to dying of. Also worth adding here however is that 20-30% of biopsies can under sample. 

 

So I have my PSA checked twice a year. I no longer have face to face or even telephone consultancies as of this month, which I can only attribute to high clinical load, hence the frequent cancellations when I was on the diagnostic pathway. My PSA is currently 5.5ng/ml and although they are keen to point out the fluctuations along the way, I am also quick to remind them that this is an overall sustained rise. If it continues I will have another biopsy. I have a reasonably high pain threshold, but that was not something that I was particularly eager to experience again. My consultant that performed it who kept hollering "direct hit" and "bang on target" said that with an attitude like that, I'd have him out of a job in months. He liked to refer to it as "death by a thousand cuts". Pretty sure he hadn't detected my gallows sense of humour and it makes you wonder how many complaints have been filed against him in the past. I thought it was quite amusing. I have had two MRI scans since the initial one (the most recent in January of this year), and they all indicate stagnation and zero growth of the lesions which is consistent with Gleason Score 6. However that does not necessarily mean that the cells within are not undergoing change and eventually another biopsy is inevitable and warranted. 

 

Apologies for the length of this, but I'd just like to mention two more things. To those that have Prostate Cancer, I would highly recommend contacting the Institute of Cancer Research at the Royal Marsden Hospital. I volunteered for/participated in their  'Precision Medicine in Prostate Cancer' research study. I applied for and was refused genetic counselling by the NHS because my cancer hasn't metastasised, so I wasn't eligible (I thought the general idea of it was to prevent that in the first place). My DNA was sent to a lab in the states (one for the tin foil hat thread), to establish whether I was carrying any cancer related gene and to assist their research into better understanding of the disease. As I said earlier, there is no specific gene expressly related to prostate cancer but there are some very nasty ones that can cause it such as BRCA1 and BRCA2. I wanted to be sure that these were not going to be passed on to my daughter which can also cause ovarian and breast cancers for example. The coding regions of genes were sequenced using an oncogenetics methodology and over 40 were tested for. None were identified although it is important to understand that this is based on our current knowledge and I suspect that there may be an undiscovered genetic link to my cancer. I don't know whether the project is still currently underway but for those in the UK it is certainly worth pursuing depending upon diagnosis. 

 

Secondly, I would urge anyone reading this over the age of 40 to regularly check their PSA - and to remember, an elevated figure does not necessarily mean that you have prostate cancer, but it will promote further investigation. This is a stealth killer that tends to be asymptomatic until it escapes. Knowing that it's there beforehand is half the battle won. 

Thanks for all this which all very interesting and obviously brilliant news for you! Happy days!!!

 

Can I just add that after my MRI scan,  I sought a second opinion from another Hospital (in Malaysia) and was advised that the conclusions of MRI scans are very much subjective and this particular Doctor advised me that he needs to know which Radiologist wrote the report to ensure he trusts the individual!?!.  Whilst this no different to many other clinical diagnoses, it just demonstrates how discovering Prostate Cancer is so very difficult unless you have a biopsy.  BTW my scan was PI-RADS  3/4 and the subsequent biopsy detected cancer.  

[SpacedX]

3 minutes ago, mozartfox said:

Thanks for all this which all very interesting and obviously brilliant news for you! Happy days!!!

 

Can I just add that after my MRI scan,  I sought a second opinion from another Hospital (in Malaysia) and was advised that the conclusions of MRI scans are very much subjective and this particular Doctor advised me that he needs to know which Radiologist wrote the report to ensure he trusts the individual!?!.  Whilst this no different to many other clinical diagnoses, it just demonstrates how discovering Prostate Cancer is so very difficult unless you have a biopsy.  BTW my scan was PI-RADS  3/4 and the subsequent biopsy detected cancer.  

Yes, good point, and I intended to add that the MRI scan is by no means definitive. In my case, the template biopsy supported the findings. However, as I also mentioned, even then, there may be a proportion that are undersampled or even yield false negative results. Furthermore, going back to my speculation, the MRI does not tell you what the cells are doing within the tumor. So although three years after my diagnosis there appears to be zero growth, it is not known whether the cells are mutating nonetheless. 

 

I suspect in my case this has been discovered very early and there is a chance that there is an unidentified genetic mechanism that triggers eventual change meaning that I may well need treatment for a higher grade within the next decade, even though Gleason 6 does not tend to evolve into something worse. It could also be that the overtreatment which afflicted so many historically was exactly what happened two decades ago with my Father. Like I said, given diagnosis, my consultant attached very little significance to the family history or the relevance of the Irish healthcare system two decades ago.

[SpacedX]

24 minutes ago, mozartfox said:

 I sought a second opinion  

This is so crucially important and recommended by Prostate Cancer UK. 

[kenny]

22 minutes ago, SpacedX said:

This is so crucially important and recommended by Prostate Cancer UK. 

Most people aren't aware that you can pay for an MRI scan and get it within days for under £300 rather than wait. I don't have much add to add to the discussion but it is very hard at times to get the GP to refer you so if folks are concerned having read yours, @mozartfox and @Alf Bentley stories, then find the money to make sure you don't need quicker diagnosis.

[Torquay Gunner]

27 minutes ago, kenny said:

Most people aren't aware that you can pay for an MRI scan and get it within days for under £300 rather than wait. I don't have much add to add to the discussion but it is very hard at times to get the GP to refer you so if folks are concerned having read yours, @mozartfox and @Alf Bentley stories, then find the money to make sure you don't need quicker diagnosis.

Good point.  I still have Benenden from my civil service days and they state the NHS waiting times for diagnostic tests are three weeks. Anything above that they will consider covering privately.  I have a good friend, who had his prostate removed in 2018 and has just turned 60.  His last PSA showed a reading, when there should not have been one and is now anxiously waiting the results of further tests.  Thanks to all those on here sharing their stories. 

[mozartfox]

1 hour ago, SpacedX said:

Yes, good point, and I intended to add that the MRI scan is by no means definitive. In my case, the template biopsy supported the findings. However, as I also mentioned, even then, there may be a proportion that are undersampled or even yield false negative results. Furthermore, going back to my speculation, the MRI does not tell you what the cells are doing within the tumor. So although three years after my diagnosis there appears to be zero growth, it is not known whether the cells are mutating nonetheless. 

 

I suspect in my case this has been discovered very early and there is a chance that there is an unidentified genetic mechanism that triggers eventual change meaning that I may well need treatment for a higher grade within the next decade, even though Gleason 6 does not tend to evolve into something worse. It could also be that the overtreatment which afflicted so many historically was exactly what happened two decades ago with my Father. Like I said, given diagnosis, my consultant attached very little significance to the family history or the relevance of the Irish healthcare system two decades ago.

Family history is, from what I am told key.  Anyways you will be absolutely fine!   I am told that more men die with Prostate Cancer  than die of Prostate Cancer,  as generally is tends not to be aggressive.

[RobHawk]

I'm a bit on the young side to worry about my prostrate yet, but just wanted to chip in and say how thoroughly interesting the thread has been and great that we all feel we can talk and share our experiences. Not something is blokes are always great at!

 

Well done chaps 🙏🙏💪💪

[SpacedX]

38 minutes ago, mozartfox said:

Family history is, from what I am told key.  

Agree - particularly in terms of awareness and identification. However, from my consultant's perspective, previous anecdotal diagnosis and treatment by an overseas health system over two decades ago had little bearing upon the evidence based medicine yielded by my MRI and biopsy results. They can only go on the data in front of them. I was told in 2006 that it had never missed a male in the family going back two generations which was a crucial heads up and has great value in terms of cognisance of the disease and recognition of the risk. I was also told that it was a very aggressive form but all indications are that this isn't actually the case and in the absence of an identifiable genetic link, in my case, we can only go with what we know so the supposed family history has little value other than the early warning that I received. 

[mozartfox]

42 minutes ago, SpacedX said:

Agree - particularly in terms of awareness and identification. However, from my consultant's perspective, previous anecdotal diagnosis and treatment by an overseas health system over two decades ago had little bearing upon the evidence based medicine yielded by my MRI and biopsy results. They can only go on the data in front of them. I was told in 2006 that it had never missed a male in the family going back two generations which was a crucial heads up and has great value in terms of cognisance of the disease and recognition of the risk. I was also told that it was a very aggressive form but all indications are that this isn't actually the case and in the absence of an identifiable genetic link, in my case, we can only go with what we know so the supposed family history has little value other than the early warning that I received. 

Yep. With me, I lost my Grand Father, my Father to prostate cancer and my older Brother is currently in remission. So with me, it was always the case of ‘when’ -not ‘if’ I get this form of cancer .  My Brother has three sons,  and they all need to be extremely vigilant.

[Paninistickers]

On 25/03/2025 at 18:51, mozartfox said:

This sums-up prostate cancer detection perfectly.  The start point for checking is PSA. If it spikes push for an MRI and take it on there after. I hope these posts will alert all FT members to take care of themselves!!

Yet my GP - a reasonable bloke on the face if it - told me not to bother with a PSA as it can open a can of investigative worms. He said you can't trust it, either false positive or false negative. 

 

I'd had an ultrasound for a bladder thing, the ultrasound showed a slightly enlarged prostate...so had the ol' DRE and he was totally unconcerned..

 

Yet, I knew prior, DRE is by no means an all clear. 

[SpacedX]

18 minutes ago, Paninistickers said:

Yet my GP - a reasonable bloke on the face if it - told me not to bother with a PSA as it can open a can of investigative worms. He said you can't trust it, either false positive or false negative. 

 

For the reasons discussed in our comments - and it isn't supposed to be a trustworthy indicator and it isn't a diagnosis. However, it is the best that we have for possible early detection of prostate cancer. And to stress, it is not a diagnostic tool. If it is raised, the next stage would be DRE, then an MRI scan and biopsy. Prostate cancer kills one man every 45 minutes in the UK. Effective early detection is the key to reducing this mortality rate. The PSA test simply measures the level of PSA in your blood and doesn't purport to be anything other than that so forget the notion of false positive or false negative.. It does not specifically test for cancer and should not be regarded as such.  A PSA above the typical level for the age range may be a sign of prostate cancer. However, two-thirds of cases of raised via PSA are due to noncancerous conditions such as prostatitis and BPH.