Prostate cancer. A useful resource.

[The general]

my last blood test my psa levels were 0.001 i had the next blood test 2 weeks ago and eagerly await the results of that but i have a problem with weight gain i had a general blood test 1 month ago and apparently the cause is very low testosterone levels due to the hormone injections so now im waiting for an appointment at urology does it ever end

To me you are in a good place

 

[varaizian]

Doesn't the general blood test also do the psa? Here in spain it covers everything the doctor puts on the sheet. some years I have 6 pages of A4 results?

Same here in France. Results by internet or email depending on laboratory in a day or two.

 

[pagey]

Doesn't the general blood test also do the psa? Here in spain it covers everything the doctor puts on the sheet. some years I have 6 pages of A4 results?

it appears not gus

 

[CazPaul]

Doesn't the general blood test also do the psa? Here in spain it covers everything the doctor puts on the sheet. some years I have 6 pages of A4 results?

You have to specifically request some tests at our GPs, psa and thyroid for instance.

 

[rod_vw]

Doesn't the general blood test also do the psa? Here in spain it covers everything the doctor puts on the sheet. some years I have 6 pages of A4 results?

If only!

My health trust (Shrewsbury & Telford) won't even add testosterone to my six monthly blood tests and I get the vaguest report after each one, just 'PSA <0.03 considered undetectable'. I'm now just over twelve months post RT and ten months since my last three month HT implant.
I was put onto six monthly 'Remote monitoring' earlier this year whence I have a PSA test and the report comes in the post.

For those who are on the Macmillan Prostate Cancer forum you will fine me as 'Osca2023' where my profile lists in detail my journey through PC treatment to date.

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[rusted]

Hmm I'm just starting the whole follow up blood test routine. My PSA test 8 weeks after treatment was undetectable not surprising as the hormone treatment was still working.
My next is Christmas and I mentioned getting a testosterone test then and started to get some push back if they won't do that I will have to go private to get that covered.
I don't understand the reluctance to do these kind of tests they are cheap and can save the NHS money by early intervention.

 

[pagey]

Hmm I'm just starting the whole follow up blood test routine. My PSA test 8 weeks after treatment was undetectable not surprising as the hormone treatment was still working.
My next is Christmas and I mentioned getting a testosterone test then and started to get some push back if they won't do that I will have to go private to get that covered.
I don't understand the reluctance to do these kind of tests they are cheap and can save the NHS money by early intervention.

I got as far as my gp a blood test showed very low testosterone so he referred me to urology for an appointment because he was not prepared to give me a prescription. I stopped hrt in February and still get hot flushes

 

[DavidG58]

I was told I will have almost undetectable testosterone levels post RT and while on hormone injections and presume I have, don’t see we can do much about that

Why would you get referred to urology?

I still have 6 months hormone injections to go, (up to 2 years) I had hoped the hot sweats would end then but based on others reports they won’t

 

[pagey]

That's what I would like to know

 

[rusted]

I was fortunate in that I only had 4/5 months of HT then a month of RT after that all finished it took 2/3 months and all the hot flushes ended I still get some fatigue but that's getting more infrequent. I'm now fit enough to plan a 3 month trip into France Spain and Portugal no mad long distance driving just steady eddy.
The thing that really surprised me in all this after the initial shock of a diagnosis (this stuff happens to other people not me). Was the whole NHS conveyer belt that took control of my life, I could no o longer do my stuff as I was always waiting for test results or another hospital appointment and I found my self in a limbo world and a loss of control of my life.

So if I needed a kick up the asset I have had it Get out there and do what ever it is you want to while you can.

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[varaizian]

My situation is a little different because, after my diagnosis in January, the committee (the French do love a committee!) decided that I only needed RT. That kept getting put back by further examinations like a bone density test (just in case I did need HT) and then a bone scan and a further MRI scan, to rule out any risk of spreading and finally a colonoscopy because there was some suggestion of irritation. Finally finished a month of RT at the end of June then a follow-up consultation with the Radiologist/Oncologist where she wanted the Urologist to look at something and then see her again! We've given up on getting away in September but have booked to be in the UK late October and I will try hard to keep that clear. So yes; fully concur with your feeling of losing control but it is difficult to argue when you seem to be pushing at an open door when getting treatments.
Unlike you I wasn't particularly surprised about the diagnosis. For some funny reason I almost expected it sometime. The dodgy heart valve that needed repairing was a bit off-putting but the one event I really didn't see coming was Br!x!t and that doesn't matter anymore. You just have to play the cards you are dealt huh?

 

[pagey]

Strange you mention a leaking heart valve as I have one as well it's been monitored for 12 years and nothing has changed so no further action required other than an echo every 2 years

 

[varaizian]

Strange you mention a leaking heart valve as I have one as well it's been monitored for 12 years and nothing has changed so no further action required other than an echo every 2 years

I knew about mine for most of my adult life but they only monitored it in the UK. Once I moved to France I was referred to a cardiologist and he said it was significant and needed fixing while I was still young enough to cope with the surgery. I was 60 at the time. Now monitored annually; ECG and thorough check over one year and echo the year after. I presume you had the dubious pleasure of the TOE test? At least they used a sedative in the UK. Over here you just have to man up and swallow the damned thing!

 

[pagey]

I knew about mine for most of my adult life but they only monitored it in the UK. Once I moved to France I was referred to a cardiologist and he said it was significant and needed fixing while I was still young enough to cope with the surgery. I was 60 at the time. Now monitored annually; ECG and thorough check over one year and echo the year after. I presume you had the dubious pleasure of the TOE test? At least they used a sedative in the UK. Over here you just have to man up and swallow the damned thing!

No I've only ever had echocardiogram

 

[BusyBuilder]

I've been on Abiraterone and steroids for 5 months now, just waiting to be told whn radiotherapy is to start, probably October. Blood test and talk with Oncologist every 2 weeks has put a stop to ant European tours this year. The hot spells are terrible but the airplus fan in the Hymer has helped a lot.
Highlands health have been fantastic, and everything happened really quickly once I was diagnosed. We have the new radiotherapy machine that means my radiotherapy is5 minutes a day for 20 days. My psa is now 0.01.
Be glad when it's allover.

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[The general]

Be glad when it's allover.

Treatment will go very quickly , everyone is different with the side effects

 

[The general]

My psa is now 0.01.

Well RT will certainly zap the cancer , to me sounds like its a good plan

 

[rod_vw]

Hmm I'm just starting the whole follow up blood test routine. My PSA test 8 weeks after treatment was undetectable not surprising as the hormone treatment was still working.
My next is Christmas and I mentioned getting a testosterone test then and started to get some push back if they won't do that I will have to go private to get that covered.
I don't understand the reluctance to do these kind of tests they are cheap and can save the NHS money by early intervention.

rusted - I completed my RT in August 2024 and the last HT implant (3mth) was mid October 2024. I 'conned' a locum doctor at my GP practice for an additional PSA & Testosterone test in April just for my own satisfaction. PSA <0.03 Testosterone <0.4.

I got as far as my gp a blood test showed very low testosterone so he referred me to urology for an appointment because he was not prepared to give me a prescription. I stopped hrt in February and still get hot flushes

pagey - Ended HT as above still getting hot flushes at a rate of between 10 & 15 per day. Purchased a great little rechargeable fan from B&M for £8, now have two of them!

I was told I will have almost undetectable testosterone levels post RT and while on hormone injections and presume I have, don’t see we can do much about that

Why would you get referred to urology?

I still have 6 months hormone injections to go, (up to 2 years) I had hoped the hot sweats would end then but based on others reports they won’t

DavidG58 - Don't expect too much too soon, my cancer specialist nurse (CSN) indicates often twelve months or more from the end of HT.

How many of you were offered Tadalafil or similar to help with ED? I had to ask for it but a recent talk to my CSN indicates that it may be offered at the start of HT by our trust in the near future.
PS after three months it 'may' be helping me.

 

[gus-lopez]

Why would you get referred to urology?

That's what I would like to know

Testosterone replacement therapy is a key area in Urology.
That is why doc referred you & won't issue a prescription preferring to leave it to them

 

[pagey]

Testosterone replacement therapy is a key area in Urology.
That is why doc referred you & won't issue a prescription preferring to leave it to them

Thanks so much for the info I thought I was going round in circles

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[DavidG58]

Testosterone replacement therapy is a key area in Urology.
That is why doc referred you & won't issue a prescription preferring to leave it to them

Trouble is, I was told prostate cancer needs testosterone to grow / survive, the last thing we need until confirmed clear is more being added

 

[fred_jb]

Trouble is, I was told prostate cancer needs testosterone to grow / survive, the last thing we need until confirmed clear is more being added

Yes, isn't that the whole point of the hormone therapy - to suppress production of the testosterone the tumour needs?

 

[pagey]

Trouble is, I was told prostate cancer needs testosterone to grow / survive, the last thing we need until confirmed clear is more being added

correct

 

[pagey]

Yes, isn't that the whole point of the hormone therapy - to suppress production of the testosterone the tumour needs?

also correct

 

[pagey]

so what do we do now id be happy to lose the weight and the boobs and get some of my strength back and i forgot the bingo wings ..incidently if any body is suffering fatigue like i was a random blood test picked up my b12 levels were very low i was given a 4 month supply of folic acid tabs and b12 injections every 3 months for life but it has made a big difference to me

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[rusted]

8 weeks after I finished my RT I started on monjaro jabs to get rid of all the weight I had put on. So far lost 20lbs and still going....

 

[pagey]

8 weeks after I finished my RT I started on monjaro jabs to get rid of all the weight I had put on. So far lost 20lbs and still going....

That's my next move

 

[Speve]

9weeks on from my Prostectomy my PSA is 0.01 very happy with that and stil not had some of the problems that others have had I consider myself very fortunate long may it continue

 

[DavidG58]

..incidently if any body is suffering fatigue like i was a random blood test picked up my b12 levels were very low i was given a 4 month supply of folic acid tabs and b12 injections every 3 months for life but it has made a big difference to me

I had similar results at a routine blood test and am also on folic acid for 4 months

My fatigue is embarrassing , small amount of work in garden etc and I sweat badly and am exhausted after 15 mins

Lost nearly all my strength and added nearly 4 st since diagnosis Jan 23

 

[DavidG58]

Lost nearly all my strength and added nearly 4 st since diagnosis Jan 23

Even worse I was only diagnosed last year not 23

But still much happier to be telling you all about it rather than the alternative

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