Prostate cancer. A useful resource.

[pagey]

I've not asked the consultant but why is the hormone jab only for two years?
The other question I've been worrying about is what are the symptoms that show that the cancer is getting worse

None at all I have never had any symptoms only from the female hormone injections eg tiredness, hot sweats and I'm looking at curtains on the internet

 

[The general]

for sure shame he dont tell me i find out more on here

You can take good info from guys that have been on the journey , i certainly did before my trip . I find the subject of pc very interesting , i finished my treatment jan 2019 .

 

[The general]

None at all I have never had any symptoms only from the female hormone injections eg tiredness, hot sweats and I'm looking at curtains on the internet

Be careful of the internet , just nhs /prostrate uk are needed otherwise your brain will go into overkill let me assure you .trust your oncologist they have seen it all before

 

[Hirsch]

What was your psa ? Its common i started ht in april and started rt jan no problem , 20 fractions 5yrs ago

3/4. Categorised as Intermediate risk

 

[The general]

3/4. Categorised as Intermediate risk

Same as me gleason score,but i had an initial psa reading 6.4

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[pagey]

Same as me gleason score,but i had an initial psa reading 6.4

Mine was5/4

 

[pagey]

Be careful of the internet , just nhs /prostrate uk are needed otherwise your brain will go into overkill let me assure you .trust your oncologist they have seen it all before

I don't search the Internet I only read the thread on here as people on here are real if you can see what I'm saying

 

[DavidG58]

Same as me gleason score,but i had an initial psa reading 6.4

My PSA (2 tests) in November was just under 6, I was referred to urology and told I was very marginal and probably didn’t need any action , but she found a lump by DRE that surprised her and authorised the MRI

Thank goodness she did

After biopsy confirmed 5/4 Gleason then added high grade and aggressive I had no symptoms

Really confirms the need to catch it early

 

[The general]

Mine was5/4

5.4? Thats pretty low

 

[The general]

biopsy

Thats the only way they confirm pc , not just by psa reading thsts only s guide

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[Folkranger]

I'm now 16 years on from a radical prostatectomy. When the doctor told me I had cancer and said "Why are you so upset, it's the best kind to have?" I had nothing to refer to but NHS leaflets. I googled, but as google was relatively in it's infancy, there was nothing really useful. It seems that there is much greater awareness now and a lot greater resource of information and advice which must be good.

 

[Folkranger]

Thats the only way they confirm pc , not just by psa reading thsts only s guide

Correct. Biopsy is the only positive way. But suddenly increasing PSA is usually more worrying than the actual level.

 

[The general]

Why are you so upset, it's the best kind to have?"

Correct

 

[The general]

But suddenly increasing PSA is usually more worrying than the actual level.

Yes , with my 6 monthly psa NO SPIKES allowed !

 

[pagey]

Duplicate

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[pagey]

That's good news

 

[rod_vw]

From notes on my NHS App after a recent PSA test the NHS has altered some thresholds. This is from a MHS website.

Perhaps a way to reduce the patients going into treatment. Luckily I am well into the process.

Age (years)	Prostate-specific antigen threshold (micrograms/litre)
Below 40	Use clinical judgement
40 to 49	More than 2.5
50 to 59	More than 3.5
60 to 69	More than 4.5
70 to 79	More than 6.5
Above 79	Use clinical judgement

 

[Folkranger]

Yes , with my 6 monthly psa NO SPIKES allowed !

My specialist talked me into a "watch and wait" strategy (he wouldn't like that term). But then my GP asked me why my PSA had rocketed up and sent me back to hospital. The specialist was unaware that my PSA had moved as the result was simply filed away. So much for "Active Surveillance". I then asked to be treated by a different hospital that had a better reputation. When I got there it was the same specialist.

 

[rod_vw]

My specialist talked me into a "watch and wait" strategy (he wouldn't like that term). But then my GP asked me why my PSA had rocketed up and sent me back to hospital. The specialist was unaware that my PSA had moved as the result was simply filed away. So much for "Active Surveillance". I then asked to be treated by a different hospital that had a better reputation. When I got there it was the same specialist.

In defence of the specialist, I would blame the administration staff at the first hospital. From experience 95% of the time the problems are with the administration not the medics.

 

[Folkranger]

In defence of the specialist, I would blame the administration staff at the first hospital. From experience 95% of the time the problems are with the administration not the medics.

Good job my GP's admin were on the ball.

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[DavidG58]

Good job my GP's admin were on the ball.

What treatment did you end up with?

 

[Hirsch]

My specialist talked me into a "watch and wait" strategy (he wouldn't like that term). But then my GP asked me why my PSA had rocketed up and sent me back to hospital. The specialist was unaware that my PSA had moved as the result was simply filed away. So much for "Active Surveillance". I then asked to be treated by a different hospital that had a better reputation. When I got there it was the same specialist.

Both my urologist and oncologist strongly recommended active surveillance. Easiest thing in the world to ignore it, until it spreads. I'm having treatment.

 

[Folkranger]

What treatment did you end up with?

Radical prostatectomy via keyhole surgery.

 

[Folkranger]

Both my urologist and oncologist strongly recommended active surveillance. Easiest thing in the world to ignore it, until it spreads. I'm having treatment.

It might depend how old you are as prostate cancer often takes decades to escape the prostate itself and so to say a 75 year old it may be worth active surveylance to avoid the downsides of the surgery. A much younger man may also choose to watch and wait for the same reason even though he may eventually have to have the operation.

If I were to have the choice again I would go with active surveilance but I would be sh*t hot on ensuring my own test intervals were kept and making sure that I had copies of all results.

I only went for the operation because of the incompetence of those that I trusted to carry out the active surveylance. I still get six monthly tests and return near zero PSA and when I ask at reception for my results and the receptionist checks her screen and says they were OK I tell her that's not good enough I want to see the test result numbers.

 

[The general]

I still get six monthly tests and return near zero PSA and when I ask at reception for my results and the receptionist checks her screen and says they were OK I tell her that's not good enough I want to see the test result numbers.

Same as me after ht /rt , i just got the nhs app and my results appear there within 24hrs , i have kept all my results on paper they look great !

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[DavidG58]

prostate cancer often takes decades to escape the prostate itself

About 1:6 apparently buck that theory, I am 65 with low PSA but due to the location of my tumor I was sent for a body scan to see if it had spread

Not sure how big they grow but from my MRI my consultant suggested it was about 30mm and unusually all 12 biopsy stabs showed cancer

I am amazed that hormone treatment alone can make the improvement they hope for, definitely one of my questions for my Wednesday appointment

 

[gus-lopez]

I tell her that's not good enough I want to see the test result numbers.

Here in Spain my psa result ,along with 50 other blood and urine tests, are all printed out every year. Every 6 months for my wife's test results.

 

[DavidG58]

Here in Spain my psa result ,along with 50 other blood and urine tests, are all printed out every year. Every 6 months for my wife's test results.

We can now see via the NHS app all test results done at doctors and letters from hospital , but they don’t appear to display hospital blood test results

 

[Folkranger]

Here in Spain my psa result ,along with 50 other blood and urine tests, are all printed out every year. Every 6 months for my wife's test results.

And who still says that the NHS is the best in the world?

 

[Hirsch]

It might depend how old you are as prostate cancer often takes decades to escape the prostate itself and so to say a 75 year old it may be worth active surveylance to avoid the downsides of the surgery. A much younger man may also choose to watch and wait for the same reason even though he may eventually have to have the operation.

If I were to have the choice again I would go with active surveilance but I would be sh*t hot on ensuring my own test intervals were kept and making sure that I had copies of all results.

I only went for the operation because of the incompetence of those that I trusted to carry out the active surveylance. I still get six monthly tests and return near zero PSA and when I ask at reception for my results and the receptionist checks her screen and says they were OK I tell her that's not good enough I want to see the test result numbers.

Sympathies to you and that is just what i wanted to avoid. I have little trust in others especially when it comes to my health. The description of active surveillance I was given did not fill me with confidence at all. Phrases like annual check, PSA tests and tell us how you are feeling.

I was 67 when diagnosed, coming up 68 now. If I had been 10 years older I might have gone for active surveillance. Not looking foward to RT but what can you do!

Good luck and best wishes.

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