Prostate cancer

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Discussion

Gas1883

294 posts

49 months

Wednesday 14th February
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Ken Figenus said:
What a superb open, frank and supportive thread.

I'm fine, but dad had it - spread to his bones aged 89 and took him out - a great innings though.

Did a job one day and shook Prof Malcom Mason's hand after interviewing him and thanked him for the dual approach he developed that let us have dad till 89. As positive for him as it was for me and it was beyond lovely.

Anyway, just went to GP for a PSA test as I've had one before but GP wouldn't do it without a rectal examination - which took me aback more than expected actually. I'm sure I can come to terms with that and out of courtesy have a shower and have clean pants on before (yes Mum!) but he was so ste and unreassuring and saying stuff like 'its no worse than a colonoscopy'. I told him I have no reference point for that and that and I would rearrange (with a far better practioner) etc... He was pretty awful from start to finish really with no peoples skills or calm reassurance- known for it...

Anyway my question is, is there a better way as PSA is still a bit hit and miss and the finger technique seems a bit blunt and clumsy and not 360?. I have some health cover, sadly, as the NHS has taken out a few family members already with their delay, rationing and neglect...

Thanks for any advice as I'd rather keep an eye than cross my fingers!
Every path I’ve had , doctor check / psa / cat scan / mri scan have always ended up with a biopsy , I even had apparently a mri scan that showed a change in lump , biopsy showed no change , I’ve recently had psa / mri & then a biopsy was called for .



Gas1883

294 posts

49 months

Wednesday 14th February
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12 cores , you lot are just playing at this prostrate game 😂

crankedup5

9,692 posts

36 months

Thursday 15th February
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toddler said:
To those guys who've had prostate cancer, what was your first clue, what made you go to your GP?

I turned 50 yesterday and I've had testicular cancer twice. Been on testosterone replacement gel for over 10 years, had a rough patch last year when my T level went through the roof.

I've been having bother urinating for a few months now: strain to start peeing, weak flow, never really feel like I've emptied my bladder completely. If i go to my GP with these symptoms what tests/scans etc. can I expect?
I’ve resurrected this question from page one of this thread. My first symptoms, for which I sought medical advise and assistance, may be seen as peculiar, which is why I am posting about it.
Whilst going for my daily walks I noticed that my left leg was beginning to feel heavier! It got to the stage, after a few weeks, that my left foot was almost feeling detached from my leg and falling down (slapping) almost in an uncontrolled manner whilst walking. It was dismissed by the doctor as unexplained.
I have since learned that my symptoms were in fact the very first early signs of prostate cancer. IIRC it was about a year later, or slightly less than a year, that I started peeing blood for a three day period.

ninepoint2

3,321 posts

161 months

Thursday 15th February
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crankedup5 said:
I’ve resurrected this question from page one of this thread. My first symptoms, for which I sought medical advise and assistance, may be seen as peculiar, which is why I am posting about it.
Whilst going for my daily walks I noticed that my left leg was beginning to feel heavier! It got to the stage, after a few weeks, that my left foot was almost feeling detached from my leg and falling down (slapping) almost in an uncontrolled manner whilst walking. It was dismissed by the doctor as unexplained.
I have since learned that my symptoms were in fact the very first early signs of prostate cancer. IIRC it was about a year later, or slightly less than a year, that I started peeing blood for a three day period.
That is interesting, I had a never really explained "flappy foot" a couple of years before I was diagnosed, never thought it could be related

Sheepshanks

32,869 posts

120 months

Thursday 15th February
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ninepoint2 said:
That is interesting, I had a never really explained "flappy foot" a couple of years before I was diagnosed, never thought it could be related
Must be confusing to medics as women can do the flappy foot thing - friend of my wife's has it pretty bad.

What made me get checked was general stiffness / aches around pelvis area, which I'd read can be a sign. Yet Consultant dismissed that out of hand.

Ken Figenus

5,714 posts

118 months

Thursday 15th February
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Dewi 2 said:

Don't be too worried about the examination. I had three occasions with different nurses/consultants. Not uncomfortable. Think they can feel for prostate enlargement (common as we get older), what else I don't know.
The NHS sequence seems to be PSA first, which if that springs a warning (not a very reliable test), then an MRI with something (forget the word, but think it produces a clearer image.)

Benign enlargement seems to be much more likely circumstances than cancer. If applicable, don't have a catheter for too long, but to avoid a long wait, private seems necessary if surgery (TURP) is required. Think TURP cost is about £7,000, but n/a of course with health cover.


Edited by Dewi 2 on Sunday 11th February 11:11
Cheers Dew'.

Have absolutely zero symptoms but wise to keep an eye.

Thanks for experienced observation on the analogue 'digital' stuff - really helps a newbie wink

Not sure how TURPS works - they must need to exit the urethra to access the prostate and zap it?

Cheers

52classic

2,551 posts

211 months

Saturday 17th February
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My last clinic appointment was something of a landmark event.
After 3 years on meds, my Consultant advised that it was time to discontinue my daily Enzalutamide and quarterly Prostap Jab.

Said he based this on consistently good test results and the risk that I would become overly familiar with the drugs if taken for a very long time. That was almost a month ago and already I am feeling generally much better. Energy levels returning, joint stiffness subsiding etc.

So for the foreseeable I'll get quarterly blood monitoring and a daily Tamsilosin tab just to make sure things keep flowing as they should, although the old 'shut off solenoid' can still be a bit unpredictable. The beige Chinos will be staying in the wardrobe for another year then! Anyone else noticed the side effect that Tamsilosin stimulates hair growth? I've always had a decent head of hair but it has become a proper thatch these days.

The Consultant gives me the reassurance that we can return to either or both of the drugs in the event of 'flare up' but since the first Doctor I saw gave me the "Couple of years if you're lucky" speech, I don't think I'm doing too badly.

I am continuing to appreciate the fellowship of the little 'club' we have built on PH. Knowledge and reassurance is so important. I'd be especially glad to hear from those who are already well established on the discontinued drugs phase.

Others have asked about first symptoms. Well, in my case other than an increased frequency of peeing there wasn't much to say. Yes, this peeing came with increased urgency but I put it down to old age. My 'three score and ten' being just round the corner at that time. Then, out of the blue, came total urinary retention.

Within the same day, I found myself in a hospital bed, catheterised, feeling well under the weather and booked in for a catalogue of tests which, thankfully I managed to organise on an out-patient basis. the rest of the story I have unfolded on these pages as things have gone along.

An early development was for my case to be transferred to the Velindre Cancer Centre, Cardiff. Once again, let me sing their praise. The people, the premises, the treatment cannot be faulted. Prompt attention at every visit and a level of detail that even included a dedicated parking space for Radiotherapy sessions.

Gas1883

294 posts

49 months

Saturday 17th February
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Still waiting on result of biopsy , had pre- op yesterday for kidney but they said they won’t make a decision on which way to go 1 st , prostrate / kidney until they looked at result of biopsy ,, though I’m hoping biopsy is no change from previously , but with my luck I’ll need 2 ops .
Hopefully get news this week .

Viper201

7,882 posts

144 months

Saturday 17th February
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52classic said:
I'd be especially glad to hear from those who are already well established on the discontinued drugs phase.
I was on Prostap for 2 years. Originally meant to be for 3 years but the side effects became too much. Stopping at 2 made little or no difference as my PSA has been consistently at 0.6 or 0.7 for the last 7 years.

It took 3 months for the Prostap to diminish and then I got going again. Energy and outlook both returned. There have been side effects from the Prostap and radiotherapy which have never gone away though.

Intestines have been damaged meaning I have to watch what I eat. Every day items like potatoes, lasagne, barbecue sauce, tomato sauce, sliced bread plus a whole list of foods I no longer eat.
Completely dry orgasm with an altered and greatly reduced sensation.
Very dry skin, especially on the scalp. Upside though, I kid you not, no zits!
Was on 3 monthly PSA testing, but moved to 6 monthly where I am to remain indefinitely.

I've never been prescribed any waterworks drugs, thankfully. My initial symptoms were difficulty peeing.

Dewi 2

1,327 posts

66 months

Sunday 18th February
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Ken Figenus said:
Dewi 2 said:

Don't be too worried about the examination. I had three occasions with different nurses/consultants. Not uncomfortable. Think they can feel for prostate enlargement (common as we get older), what else I don't know.
The NHS sequence seems to be PSA first, which if that springs a warning (not a very reliable test), then an MRI with something (forget the word, but think it produces a clearer image.)

Benign enlargement seems to be much more likely circumstances than cancer. If applicable, don't have a catheter for too long, but to avoid a long wait, private seems necessary if surgery (TURP) is required. Think TURP cost is about £7,000, but n/a of course with health cover.
Cheers Dew'.

Have absolutely zero symptoms, but wise to keep an eye.

Thanks for experienced observation on the analogue 'digital' stuff - really helps a newbie wink

Not sure how TURPS works - they must need to exit the urethra to access the prostate and zap it?

Cheers

Re. TURPS (A procedure for benign prostate enlargement. Very common for older men.)
In motoring terms, it would be described as a rebore. Total anasthetic normally.
Surgeon needs to enlarge the tube going through the prostate, following its contraction as a result of prostate enlargement.
If the tube becomes extremely small diameter, that is when urinating becomes difficult and eventually can suddenly not be possible all. In the trade, they call that retention. In our terms, it is an uncomfortable wait in A&E, before a drainage tube is installed.
You don't want to join the NHS surgery waiting list, after those circumstances arise.


52classic

2,551 posts

211 months

Monday 19th February
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Viper201 said:
52classic said:
I'd be especially glad to hear from those who are already well established on the discontinued drugs phase.
I was on Prostap for 2 years. Originally meant to be for 3 years but the side effects became too much. Stopping at 2 made little or no difference as my PSA has been consistently at 0.6 or 0.7 for the last 7 years.

It took 3 months for the Prostap to diminish and then I got going again. Energy and outlook both returned. There have been side effects from the Prostap and radiotherapy which have never gone away though.

Intestines have been damaged meaning I have to watch what I eat. Every day items like potatoes, lasagne, barbecue sauce, tomato sauce, sliced bread plus a whole list of foods I no longer eat.
Completely dry orgasm with an altered and greatly reduced sensation.
Very dry skin, especially on the scalp. Upside though, I kid you not, no zits!
Was on 3 monthly PSA testing, but moved to 6 monthly where I am to remain indefinitely.

I've never been prescribed any waterworks drugs, thankfully. My initial symptoms were difficulty peeing.
Thanks Viper. You've made an old man very happy!
7 years not out you say. I'd be pushing 80 by then - Not a bad innings.
You also said there's no need to get impatient about the Prostap effect diminishing. Common sense - It won't be 'til April that I will actually miss a scheduled jab.

I didn't do too badly with the longer term effects of Radiotherapy. At the time, there were all sorts of things going on, but other than an increased consumption of Gaviscon my appetite for more or less anything has returned and all associated systems are working fine.

Interesting that you mention outlook. That's so true, even in these few short weeks I've been inspired to get the caravan out of storage and get back into my BMW resto.

So far, so good. Happy days. Thanks again Viper.

omniflow

2,604 posts

152 months

Tuesday 20th February
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Ok, so I've not read this thread all the way through, I've just skimmed the first couple of pages and a few of the most recent posts.

I had an episode of peeing blood just before Xmas - started on Friday 22nd. Phoned 111 and by some miracle got seen by my GP about 6pm on that Friday. Given antibiotics specific to UTIs. Had a fairly miserable Xmas, but stopped passing blood on Monday 25th. Went back to Docs on Wednesday 27th who said no infection found in sample and he referred me to the "2 week wait process".

I had been having some urgency and frequency issues but being male had managed to ignore them. Also, been getting intermittent "full feelings" in my head for the past 4 or 5 months. I put this down to slightly high blood pressure.

Anyway, I've had a CT scan (X-Ray with a spinning doughnut), a camera up (down) the urethra (not sure what the correct name for this is) and an MRI. Also got a flow test a week on Friday. I definitely have an enlarged prostate and have been prescribed Tamsulosin, but at the moment I don't know what else is / might be wrong. The lady that did the camera said my bladder was fine. I've managed to get an appointment with my GP tomorrow - he's going to phone me "in the morning" - so hopefully it's not bad news, although I suspect it will be more of a "we don't know yet". The camera thing was nowhere near as unpleasant as I was thinking it would be. The anticipation was far worse than the actual event.


westberks

959 posts

136 months

Wednesday 21st February
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omniflow said:
Ok, so I've not read this thread all the way through, I've just skimmed the first couple of pages and a few of the most recent posts.

I had an episode of peeing blood just before Xmas - started on Friday 22nd. Phoned 111 and by some miracle got seen by my GP about 6pm on that Friday. Given antibiotics specific to UTIs. Had a fairly miserable Xmas, but stopped passing blood on Monday 25th. Went back to Docs on Wednesday 27th who said no infection found in sample and he referred me to the "2 week wait process".

I had been having some urgency and frequency issues but being male had managed to ignore them. Also, been getting intermittent "full feelings" in my head for the past 4 or 5 months. I put this down to slightly high blood pressure.

Anyway, I've had a CT scan (X-Ray with a spinning doughnut), a camera up (down) the urethra (not sure what the correct name for this is) and an MRI. Also got a flow test a week on Friday. I definitely have an enlarged prostate and have been prescribed Tamsulosin, but at the moment I don't know what else is / might be wrong. The lady that did the camera said my bladder was fine. I've managed to get an appointment with my GP tomorrow - he's going to phone me "in the morning" - so hopefully it's not bad news, although I suspect it will be more of a "we don't know yet". The camera thing was nowhere near as unpleasant as I was thinking it would be. The anticipation was far worse than the actual event.
surprised they didn't do a biopsy too; that may be the next suggestion just to cover all bases; depending on the MRI result.

otherwise a fairly prompt and thorough check up so far.

hopefully just an enlarged prostate giving you grief and then the meds etc will start to work.

Fingers crossed that its a good chat with the GP

TwigtheWonderkid

43,483 posts

151 months

Friday 23rd February
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Ken Figenus said:
Not sure how TURPS works - they must need to exit the urethra to access the prostate and zap it?
I've had a TURP. The inside ring of the donut that is the prostate gland forms part of the urethra. The urethra runs into the top of the prostate, and exits the bottom, A bit like sticking a straw in the top of a cotton reel and another straw coming out the bottom, with the inside of the reel bridging the gap. That's how it was explained to me. So they can burn out the prostate from the inside out.

Armitage.Shanks

2,283 posts

86 months

Friday 23rd February
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westberks said:
omniflow said:
Ok, so I've not read this thread all the way through, I've just skimmed the first couple of pages and a few of the most recent posts.

I had an episode of peeing blood just before Xmas - started on Friday 22nd. Phoned 111 and by some miracle got seen by my GP about 6pm on that Friday. Given antibiotics specific to UTIs. Had a fairly miserable Xmas, but stopped passing blood on Monday 25th. Went back to Docs on Wednesday 27th who said no infection found in sample and he referred me to the "2 week wait process".

I had been having some urgency and frequency issues but being male had managed to ignore them. Also, been getting intermittent "full feelings" in my head for the past 4 or 5 months. I put this down to slightly high blood pressure.

Anyway, I've had a CT scan (X-Ray with a spinning doughnut), a camera up (down) the urethra (not sure what the correct name for this is) and an MRI. Also got a flow test a week on Friday. I definitely have an enlarged prostate and have been prescribed Tamsulosin, but at the moment I don't know what else is / might be wrong. The lady that did the camera said my bladder was fine. I've managed to get an appointment with my GP tomorrow - he's going to phone me "in the morning" - so hopefully it's not bad news, although I suspect it will be more of a "we don't know yet". The camera thing was nowhere near as unpleasant as I was thinking it would be. The anticipation was far worse than the actual event.
surprised they didn't do a biopsy too; that may be the next suggestion just to cover all bases; depending on the MRI result.

otherwise a fairly prompt and thorough check up so far.

hopefully just an enlarged prostate giving you grief and then the meds etc will start to work.

Fingers crossed that its a good chat with the GP
If the blood is still present they should rule out a kidney issue. Although I note you say it's stopped and sometimes it can happen for a number of reasons, intense fitness training etc. and disappears.

My pal has BPH and is on medication (Finasteride as Tamsulosin supplies a 'dry ending') but had an episode where there was trace blood in the urine but nothing different to managing the BPH - frequency, flow etc.

He had all the procedures you've mentioned and they found a 'tumour' on one of his kidneys. They opined it was cancerous but caught very very early and it was whipped out within two weeks. He was insistent they did all they could not to remove the kidney as well given their efficiency reduces with age. Good job they did as when they took out the tumour it was completely benign!

Hopefully everything will check out OK and the positive from this is you've had all the tests which have given you a thorough check up.

This stuff is always a worry, it was with me, but you've actioned the process. As an aside I mentioned once to my GP that scan results can take an age to come through but he said if there was something sinister it would have been flagged up quickly and actioned.

(If I ever have the cystoscopy again I'll leave my socks on so I can't see my toes curling up)


Edited by Armitage.Shanks on Friday 23 February 22:42


Edited by Armitage.Shanks on Friday 23 February 22:48

omniflow

2,604 posts

152 months

Saturday 24th February
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Thanks both for your reassuring input.

I've learnt quite a lot more since my previous post:

If you've been referred to the hospital by your GP, then it's the hospital you need to follow up with on your results. Not your GP. This is despite me asking the GPs receptionist what I should do (yes - I know)
A hospital blood test as part of the referral and a GP blood test booked at the same visit are two different things and you need to have them both.
When your GP refers you to the 2 Week Wait Cancer Pathway and tells you that this doesn't mean you've definitely got cancer - there's a 70% chance that you haven't - listen to him as this could be the case.
When the hospital write you a letter that you receive via the app on your phone, it takes about as long to get to you as a postal letter. They seem to batch them up. I received notification for mine about 36 hours after it was "sent"

No cancer for me. However, I do have "a prominent benign prostate hypertrophy". I have a flow test on Friday, and then a telephone consultation with the Consultant a couple of weeks after that. I'm on Tamsulosin, which are having an impact but haven't yet eliminated all symptoms. No idea what the Consultant will suggest for the longer term.

I've googled BPH and it looks like there's no known cause apart from getting older - which I definitely am. 60 in 3 months.

I've updated my annual travel insurance provider - the wording on their "don't bother telling us about this condition" list is not the same as the wording on my letter, so I figured better safe than sorry. They've accepted my condition without issue.

Back to planning and booking holidays, and thinking about going back to my retirement job. It's zero hours, and I stopped it just before the Cystoscopy. I've got used to not doing it, but as I slowly re-adjust to having not much to worry about I think I'll re-start. Maybe I'll wait until after the flow test.

TwigtheWonderkid

43,483 posts

151 months

Saturday 24th February
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To derail, but only slightly, I've had a TURP and I have 2 questions. I wonder if anyone on here knows.

1. Having had a TURP for BPH, am I less likely to get prostate cancer? I saw one thing on Google saying 4% of men who have had a TURP go on to get prostate cancer. I would have thought 4% is less than the general rate of prostate cancer in men?

2. 90% of men who have had a TURP have a "dry finish" from that point onwards. I'm one of the 10%, although now a much reduced quantity. Am I still fertile? It doesn't actually matter, I'm 61 and the wife is 60, but I'm just curious.

Viper201

7,882 posts

144 months

Saturday 24th February
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About 1 in 8 men get prostate cancer. Fertility may be affected and the chances of getting prostate cancer is higher for the first 6 months after the TURP. Then it diminishes but in the long term there may be a higher risk. Plus of course age plays a big part.

The reason most men are dry after TURP is that the semen goes to the bladder and is called retrograde ejaculation. If someone who is younger and may want children, and this is a concern, should maybe opt for a TUIP instead (Transurethral incision of the prostate) which has a lower risk.

I've learned something new today!

TwigtheWonderkid

43,483 posts

151 months

Saturday 24th February
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Viper201 said:
About 1 in 8 men get prostate cancer. Fertility may be affected and the chances of getting prostate cancer is higher for the first 6 months after the TURP. Then it diminishes but in the long term there may be a higher risk. Plus of course age plays a big part.
The internet says 4% of men who've had TURP go on to get prostate cancer, which is 1 in 25. That's why I'm confused, because that would mean a TURP reduces your chance of prostate cancer.

Gas1883

294 posts

49 months

Saturday 24th February
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14 days after biopsy still waiting to find out result , professor I saw about kidney said it would be 12 days , wouldn’t normally be overly concerned but as they won’t proceed with kidney operation until they’ve looked at prostrate biopsy I’m getting a bit impatient, though I guess no news is good news