Prostate cancer. A useful resource.

[fred_jb]

Doctors love to trot out the cliche that "You will die with this rather than of it." While this is certainly the case for some people it is not for others - it all depends on how aggressive the cancer is. My Dad was told this and while he did have a short course of radiation treatment this was a long time ago and the treatment was not very effective. He then died horribly of the disease after a long and painful decline. That was why I went for very early intervention in the form of surgery after a positive biopsy even though the NHS consultant was very reluctant to even consider it - so much so that we used a chunk of savings to have it done privately. I don't regret it.

 

[Rapido925M]

It would never occur to me at that age to ask for one? My father was diagnosed at 78 & even then was told "you're not going to die of this" & he didn't. died 12 years later of pneumonia.

You are correct: the 15y survival rate is 97.5% of those without pc.
HOWEVER, by being diagnosed I now know that I have a heart problem (minor) and I will have my benign enlarged prostate removed which causes me to go to the toilet frequently. This was only going to get worse as I aged BUT the operation would not be done after my 74th birthday.

Additionally, I like many others, have frequent blood tests and PSA doesn’t involve anything extra: win-win!

Gordon

 

[rod_vw]

It would never occur to me at that age to ask for one? My father was diagnosed at 78 & even then was told "you're not going to die of this" & he didn't. died 12 years later of pneumonia.

Although I 'retired' from my first job at the age of 56 which began in 1965 as a GPO/BT engineer I immediately embarked on a further 18 years in a very similar but part time job and as you can see from my signature I wasn't idle in that period outside the part time job completing and selling five self-build campers. So at the age of 74 I felt that I was by no means 'over the hill' and was willing to investigate anything that may extend my active life.
My urology consultant told me that he would perform prostate surgery on fit men up to and including their seventy fifth year which included me. However he sent us (my wife and I were both present for the consultation) away to make a very careful personal decision as to whether I was to go down the surgical or radiotherapy route, no pressure either way as he considered each being equally appropriate in my case. This we did having spoken to others in a similar position and a doctor friend I eventually decided on the radiotherapy route. If you've followed me through this you will know that I am currently seven weeks post RT and hoping for a positive consultation with my radiotherapy consultant on the 23rd of this month.

gus-lopez no offence taken at the 'at that age' comment. So many of us are in the same boat and I'm determined to be one who swims away from it.

 

[Hettie's Crew]

It would never occur to me at that age to ask for one? My father was diagnosed at 78 & even then was told "you're not going to die of this" & he didn't. died 12 years later of pneumonia.

My friends next door neighbour asked for the PSA test a couple of years ago in his mid 50’s, no symptoms just an annual work physical.
Advanced Prostate cancer, complete removal of the Prostate and is now doubly incontinent and impotent.
He was told they could have had a better outcome if he’d been diagnosed earlier.

 

[Hirsch]

My friends next door neighbour asked for the PSA test a couple of years ago in his mid 50’s, no symptoms just an annual work physical.
Advanced Prostate cancer, complete removal of the Prostate and is now doubly incontinent and impotent.
He was told they could have had a better outcome if he’d been diagnosed earlier.

Sobering

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[gus-lopez]

I will have my benign enlarged prostate removed which causes me to go to the toilet frequently.

Ashave I but it would never enter my head to get anything done about it?

Additionally, I like many others, have frequent blood tests and PSA doesn’t involve anything extra: win-win!

I have had blood tests including psa ,yearly for the past 15 or so years since the doc thought I had something that I didn't .
Just booked this years with my doctor. usually around 56 different readings but if I book it on occasions a locum is on then you might get the full 8 xA4 sheets or 100+ blood test readings.

@gus-lopez no offence taken at the 'at that age' comment.

Didn't mean it like that as I am not much younger than you but would not bother at my age . Wife often says to me "why do you not see the doc about this ,that ,the other.
With one if I have had it for 30 years why bother now? Badly damaged shoulder I have had for 52 years . If they didn't want to fix it back then why should I worry now?
I'm just passing time until I die.

 

[The general]

Sobering

Very .

 

[rod_vw]

Ashave I but it would never enter my head to get anything done about it?

I have had blood tests including psa ,yearly for the past 15 or so years since the doc thought I had something that I didn't .
Just booked this years with my doctor. usually around 56 different readings but if I book it on occasions a locum is on then you might get the full 8 xA4 sheets or 100+ blood test readings.

Didn't mean it like that as I am not much younger than you but would not bother at my age . Wife often says to me "why do you not see the doc about this ,that ,the other.
With one if I have had it for 30 years why bother now? Badly damaged shoulder I have had for 52 years . If they didn't want to fix it back then why should I worry now?
I'm just passing time until I die.

I nearly asked how you got to see the full list of the blood analysis then I realised that you were in Spain. Wow what a difference to the UK where the docs want to keep everything secret!
My brother had a hip replacement whilst living on GC and also had all of his data and other documents without any question. Why the hell doesn't our NHS do the same? Please, nobody answer that as I know the reason!

 

[Rapido925M]

Yes but…….

I was very impressed with the reports which we got for urine infection when we lived in Marbella: a print out of every antibiotic tried, it’s effectiveness and the recommended treatment
Unfortunately, it was usually two days between booking an appointment and seeing the doctor. She then authorised the test but the nurse didn’t work every day so it was another couple of days before the sample could be accepted . Then we were allowed to book an appointment with the doctor, usually a week after that first consultation. An antibiotic was prescribed but sometimes the problem had changed and a different organism was causing the infection. It was not uncommon for irritation to continue for a few weeks.

One weekend we flew home on Friday, went to a walk in clinic on Saturday morning, was prescribed a broad spectrum antibiotic and by Monday was feeling a lot better.

Gordon

 

[Ian_H]

I nearly asked how you got to see the full list of the blood analysis then I realised that you were in Spain. Wow what a difference to the UK where the docs want to keep everything secret!
My brother had a hip replacement whilst living on GC and also had all of his data and other documents without any question. Why the hell doesn't our NHS do the same? Please, nobody answer that as I know the reason!

In England you can view all your GP records/test results etc online or via the nhs app. You can also get an electronic dump of all your records (I did this a few years ago).
My mother in law in Wales can't get anything from her GP. Different system.

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[68c]

I nearly asked how you got to see the full list of the blood analysis then I realised that you were in Spain. Wow what a difference to the UK .......

Download 'My Medical Record'

NHS based App that shows your test results, downloadable letters from your consultant etc.

You get full printout of your blood tests, bearing in mind the Doctor will tell the lab what to test for so often only those results. Trouble is it then leads you into Googling what the results mean so not a good idea for any hyperchondriacs.

 

[gus-lopez]

I nearly asked how you got to see the full list of the blood analysis then I realised that you were in Spain. Wow what a difference to the UK where the docs want to keep everything secret!
My brother had a hip replacement whilst living on GC and also had all of his data and other documents without any question. Why the hell doesn't our NHS do the same? Please, nobody answer that as I know the reason!

Yes,usually offered & printed out without asking. You can then check yourself what is going upor down against previous one.
Wife has analysis at least twice per year as she has had cancer.
Plus Any additional ones the oncologist wants but i try to coordinate them so that they double up for the bianual ones. Another thing we learnt here the other day is that if the oncologist asks for a opinion on anything from another department then she is obliged to make appointments for another blood analysis & a Cat scan.

 

[rod_vw]

In England you can view all your GP records/test results etc online or via the nhs app. You can also get an electronic dump of all your records (I did this a few years ago).
My mother in law in Wales can't get anything from her GP. Different system.

Not in my area, the hospital trust does not up-load anything to the NHS app.

We changed GP practices twelve months ago, the records were wiped from our NHS apps and new records started from the transfer date. The new practice could not transfer the records from the previous one, all they could do was apply for the records and provide us with them on CDs, even refused to put them onto USB memory. A good job we had a CD drive!

 

[Rapido925M]

All over now! Lying in a pleasant side ward sipping water and feeling better by the minute

The surgeon visited approximately 30 minutes after I came round in recovery and said that all had gone well. Previously he predicted that my prostate was 80g compared to the 70g which would have been typical for a man of my age. It’s 130g so better out than in!

Discharge is scheduled for noon tomorrow

Now to get on with the rest of my life

Gordon

(Isn’t social media wonderful? My wife posted on our family chat page that she was going to make a surprise visit this evening )

 

[KiltedCamper]

I went to the GP with this problem,.. finger up the bum confirmed enlarged prostate but no signs of a tumour .. but they can only examine one side of the gland.. so that was followed up by a PSA test that was negative ..

Was given a prescription for Tamsulosin capsules , one a day to reduce swelling which worked great and can now pee like a horse ..well, a pony anyway .. such a relief literally

For too long I put up with taking ages to pee and up during the night several times for the loo, don't hesitate , have it examined.

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Been there, done that. Tamsulosin ROCKS! JFDI

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[Hettie's Crew]

Checking your NHS app regularly can sometimes be a little disturbing.
I had my second annual biopsy procedure on 29th August and recently received an appointment to talk to the Consultant for 22nd October.
Last year I was graded 3+3 on the Gleason, noticing there were additional entries and documents on my record I had a look to see an MDT had taken place between my GP and Consultant Urologist and the accompanying record said I’m now 3+4.
Serves me right for looking but I’ll have to wait until 22nd October for an explanation of the results.

 

[rod_vw]

Checking your NHS app regularly can sometimes be a little disturbing.
I had my second annual biopsy procedure on 29th August and recently received an appointment to talk to the Consultant for 22nd October.
Last year I was graded 3+3 on the Gleason, noticing there were additional entries and documents on my record I had a look to see an MDT had taken place between my GP and Consultant Urologist and the accompanying record said I’m now 3+4.
Serves me right for looking but I’ll have to wait until 22nd October for an explanation of the results.

I have found that there is a lot of help and support from others who have 'been there, done that' on the McMillan Prostate Cancer Forum , I don't know if you frequent those pages but if not I suggest that it's worth a look.

 

[Oldrat]

I have found that there is a lot of help and support from others who have 'been there, done that' on the McMillan Prostate Cancer Forum , I don't know if you frequent those pages but if not I suggest that it's worth a look.

Spot on Rod.

See post #1

 

[DavidG58]

Hettie's Crew

You need some answers, what did they tell you would happen when they confirmed your cancer diagnosis last year?

Both MacMillan and PCUK have phone support options , I have found MacMillan best for my needs

I am surprised you were not offered any treatment with a 3/3 score, was it T2 or T3?

 

[Hettie's Crew]

Hettie's Crew

You need some answers, what did they tell you would happen when they confirmed your cancer diagnosis last year?

Both MacMillan and PCUK have phone support options , I have found MacMillan best for my needs

I am surprised you were not offered any treatment with a 3/3 score, was it T2 or T3?

It’s alright, I know we’re I am with it all, the GP practice and Consultant have been great. At last years Cancer diagnosis all treatment options were discussed and I chose active surveillance with the option of Brachytherapy should treatment become the next step.
The point of my post was to point out that information can be on the app before you’ve had your consultation, so I’m now in the position of knowing things have progressed but not having had the explanation.
Though I suspect I know the answer, last year they did 14 biopsies, 9 on the side that showed a shadow on MRI and 5 on the clear side. It was the clear side that turned up a positive.
This time they’ve done 15 biopsies. The lady that did the biopsies explained that because of the ‘hit and miss’ nature of the biopsy procedure and that not all cancers show up on MRI, I could get a zero or several positive result.
I suspect they’ve hit more this time, though it’s best just to wait and see what Mr Smith, the Consultant says on the 22nd.

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[Cookieboy68]

Had my Prostrate checked a couple of weeks ago.All good .
The reason I went overactive bladder and waking up to go more in the night.
I have been drinking decaff tea and coffee since and things have calmed down

 

[Rapido925M]

Yesterday I checked my Discharge Letter following a radical prostatectomy on Saturday. “Continue to take 1 Tamsulosin daily: doctor to issue repeat medication”. Someone needs to think a bit more carefully!

Gordon
I phoned the hospital just to make sure that it was wrong.

 

[Two Rivers]

I’m so glad that this thread has attracted so much attention so quickly.

The topic needs airing- us blokes are notoriously bad at seeking help when it comes to health. My overall experience was positive- telling my family that I had cancer was the hardest part though.

Because mine was caught early, I’m 3.5 years clear now, with undetectable PSA levels. And yes, reassuringly, everything still works, but no more kids though!

Since having my prostate out in 2020, I have always urged my friends and contacts to get checked.

As a result, five people I know have been diagnosed with PC, one left it a year and yep, you've guessed it, not good, prostate out along with some other bits and sadly the cancer has spread.

Get it checked and do so asap.

We men and health issues, we seem to adopt the Stray dog theory, Ignore it and it will go away

 

[DavidG58]

Yesterday I checked my Discharge Letter following a radical prostatectomy on Saturday. “Continue to take 1 Tamsulosin daily: doctor to issue repeat medication”. Someone needs to think a bit more carefully!

Gordon
I phoned the hospital just to make sure that it was wrong.

Why would it be wrong ?

I have just been put on it, hopefully to control the amount of times I need to get up at night and help with urgency , my understanding is it works mainly on the urethra not the prostate

I do still have my prostate gland but my FIL has had his out and is on the same

 

[DavidG58]

Day 18/20 on RT for me today , pretty much now have had all the predicted side effects , mostly bowel and bladder related, not always convenient , not nice at times but compared to the alternative

Apparently the side effects still continue to develop for a few weeks after RT stops, but then mostly start to improve

I told my cancer nurse to stop asking if I have had ‘this or that yet’ at my weekly reviews as I always seem to get it within a couple days

I had a bad day the other day, but then had a good look round the clinic the next day , there are a lot of much younger people than me there, some with far more obviously serious conditions

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[BillandHelen]

It’s alright, I know we’re I am with it all, the GP practice and Consultant have been great. At last years Cancer diagnosis all treatment options were discussed and I chose active surveillance with the option of Brachytherapy should treatment become the next step.
The point of my post was to point out that information can be on the app before you’ve had your consultation, so I’m now in the position of knowing things have progressed but not having had the explanation.

Hope that your appointment goes well. I had brachytherapy in August 23, so I’m just over a year into it and due to get my psa tested again next week. Treatment has been successful so far. I found brachytherapy to be an amazing treatment, in and out in one day, couple of days recovery and then back to my “new” normal. Side effects have been bad bruising on thighs post op, bit painful peeing at first but that has now gone away, still quite often getting up once in the night, sexual function has been ok, haven’t needed to take any little blue pills! Other upsides were no real bowel issues and no need for a catheter.
Personally I’d want to ensure that you don’t miss out on the opportunity of brachytherapy by waiting too long, as you’ll know there are a few hoops you have to jump through.

 

[Hettie's Crew]

Hope that your appointment goes well. I had brachytherapy in August 23, so I’m just over a year into it and due to get my psa tested again next week. Treatment has been successful so far. I found brachytherapy to be an amazing treatment, in and out in one day, couple of days recovery and then back to my “new” normal. Side effects have been bad bruising on thighs post op, bit painful peeing at first but that has now gone away, still quite often getting up once in the night, sexual function has been ok, haven’t needed to take any little blue pills! Other upsides were no real bowel issues and no need for a catheter.
Personally I’d want to ensure that you don’t miss out on the opportunity of brachytherapy by waiting too long, as you’ll know there are a few hoops you have to jump through.

Having looked at all the treatment options I preferred the idea Brachytherapy, I’d have to go to Leeds for that apparently but it’s only a one off.

 

[BillandHelen]

Having looked at all the treatment options I preferred the idea Brachytherapy, I’d have to go to Leeds for that apparently but it’s only a one off.

Yes, you get your “clear out” meds for the day before, I was in at 8am, procedure at 10am, back on the ward and recovering by 12. Catheter removed and once I showed I could pee ok was discharged mid afternoon. Back home and feeling a bit tired and bruised by late afternoon. Phone follow ups for a couple of days and that was that.

 

[Hettie's Crew]

Yes, you get your “clear out” meds for the day before, I was in at 8am, procedure at 10am, back on the ward and recovering by 12. Catheter removed and once I showed I could pee ok was discharged mid afternoon. Back home and feeling a bit tired and bruised by late afternoon. Phone follow ups for a couple of days and that was that.

Did anyone tell you how long the seeds remain active?

 

[BillandHelen]

Did anyone tell you how long the seeds remain active?

Yes, they last about 9 months with most of the energy given off in the first 6 months, my psa fell rapidly over that period. They give you a health card to show at airports, in case you set the scanners off, I have a few times but after the usual body pat down was waved through! Need to stay away from pregnant women and small children for a few months.
If you want to have a chat about it, pm me and we could have a call. It’s an amazing treatment.

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