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Could kick myself

User
Posted 01 Oct 2021 at 15:05

Hello,

I’ve been scanning the various posts for a couple of weeks now and you look like a friendly lot so thought I’d try to get some advice from the battle scarred veterans.

I first came to this forum 5 years ago when I had a bit of a scare....been having piddle problems since my late 40’s (now 63).....My wife made me go to the doc back in 2006 (just in case)....Finger up bum (nothing unusual felt) PSA 1.2.....Breathe a sigh of relief and forget about the “C” word....fast forward to 2014 and getting up in the night becoming a bit of a ball ache so back to the Doc, DRE nothing found, PSA 3.3. This is a tad over what my Doc is happy with and wants to refer me to urology....I ask to sit the exam again and this time 3.1....Doc says as long as I get my PSA done every 6 months she’ll not “bully” me further. June 2016 PSA has been stable at 3.1 but now jumps to 7.5....Alarm bells and swift referral to hospital....Being a control freak who is now out of control I don’t wait for the NHS and go to a place in Wimpole st that specialises in the P word. PSA now 4.5 an eminent professor sticks his (very large) finger into my nethers and tells me that the NHS are always snowed under so probably dodgy PSA reading and although I have a large prostate “There is No Cancer”. .....Much celebration and happiness needless to say. So much so I take my wife to a nearby hotel and we celebrate with 2 club sandwiches and 4 gin and tonics £114.00 thanks very much....(I was so ecstatic I couldn’t  have cared less)

1 week later I get a letter from the hospital with an appointment for a cystoscopy (camera down the old chap)...Dr tells me “No Bladder Cancer”. Which surprises me as I didn’t realise that was what they were looking for.....He then sends me to the MRI dept for an appointment....Long story short MRI comes up with PIRADS 4 (oh dear) scheduled for a Trus 12 core biopsy....Comes back OK...They’re being thorough so now have a transperineal saturation biopsy and amazingly that’s clear too...The whole rollercoaster ride took about 14 weeks beginning to end and I felt completely wrung out afterwards (I’m sure everyone here knows the feeling)

March 2018 Im having my PSA done religiously every 6 months and I’m obviously still being monitored by the hospital as the call me back for another MRI. This time my PIRADS score is 3 and my PSA is around 3.7. I have a new man in charge and he kindly informs me that as my Prostate has been measured at 70cc he would not be concerned unless my PSA was over 10 (I know where he’s coming from, but have read enough about PSA velocity to realise that that’s a dangerous statement to make to the uninitiated)....He tells me he doesn’t think I have any “significant” cancer (I was hoping I had none) and says that a HOLEP procedure will sort me out.

Nine months later & I’ve completely forgotten about it and then  just before Christmas I get a letter giving me a weeks notice for the op. By then I’ve read a few things re: incontinence and impotence and have decided I’d rather not, so cancel the procedure. My PSA has slowly risen in the last 3 years to 4.8 and then all of a sudden my last test is 8.4...My Dr says what do I want to do? Cooler than James Bond I say that I’ve been here once before and let’s do it again in 5 weeks time....Guess what? Now 14.8...Panic stations...Fast track referral (I put a stop to that as I’m going to Cornwall for a wedding and a week off). By the time I get back from Cornwall and we start the process again I’m now feeling a pain in my hips and back and a swelling in my groin (Which sounds like I’m having an attack of “the vapours I know but there it is).

Now with the 20/20 vision that hindsight gives you, I’m wondering whether my urologist was offering me the HOLEP thinking that that was the best way to find anything sinister that he suspected all along. Needless to say with the rapid rising PSA and the new aches and pains, I am kicking myself that I never opted for the HOLEP that may have picked up on something 3 years ago....So basically wondering whether anyone has been in the same boat or had the hip/back/groin pain thing that turned out to be a bit of a vivid imagination/hysteria (These pains are completely brand new by the way). If you managed to read this far without dropping off, bless you. I know it’s extremely long winded, but I’m twisting in the wind here and hoping for a bit of solace (or somebody with a knife to cut me down)

Regards

    Tony

 

 

 

 

User
Posted 01 Oct 2021 at 16:32
Well, as we all know, 20/20 hindsight vision is a very wonderful thing!

In my opinion, your GP should have referred you to urology, more or less at the start. You should have avoided the inaccurate and perilous TRUS biopsy, which thankfully is being phased out, and had a transperineal biopsy like I did, with 42 samples taken.

I had to look up ‘HOLEP’ and I wonder if it’s the same as the ‘Green Laser’ TURP procedure my 70 year old friend had a while ago, and he is delighted that he is now ‘pissing like a horse’!

It would concern me that I might have some prostate cancer (most likely at your age anyway), and talk to your urologists about it. If you have the TURP and your PSA drops, you can probably breathe a sigh of relief.

Aches and pains are not common with prostate cancer unless it has spread to the bones, and is more likely to be caused by UTIs and BPH.

Best of luck.

Cheers, John.

User
Posted 02 Oct 2021 at 10:24

I wouldn't be too worried that you may have missed the boat on catching this. All of us men are going to get prostate cancer one day. 

You have managed to go from 2014 to 2021 without much prodding, poking, cutting, radiation. That is 7 years of quality life. Fair enough all the prodding and poking may start now, and the cancer may have got a little further. I doubt if your pains are anything to do with the cancer. If your psa was over 300 then that would be different, but with it below 20 it is fairly unlikely it has spread.

Your story about the cost of the G and Ts reminds me of a holiday when I took my elderly parents to France in about 1990, they had never been abroad before. My mom is Irish so she drinks Guiness. For our younger readers I should mention that a pint in a pub in the UK in 1990 was about £1.40. Anyway in Paris we found a bar which served Guiness which is quite unusual in France. We got the drinks and enjoyed them, then the bill came which I paid in francs. Afterwards mom said "how much was the Guiness?" I said "about £8" she said, "I've never had one so bitter". 

Dave

User
Posted 02 Oct 2021 at 11:51
The aches and pains are almost certainly psychosomatic - or you are sleeping restlessly and this is causing muscle tension. I suspect that if the urologist had suspected something sinister, he would have said so and recommended repeating the template biopsy in a few months rather than offering a more invasive procedure that might or might not find a problem.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Oct 2021 at 12:48

For what it is worth, as soon as I started on the treadmill of having a scan and biopsy I started noticing pain in the groin and lower back area and, like you, especially if you google your condition, thought the worse. To date, with my last biopsy having been undertaken on 16/09, my cancer has been found to all be within the prostate itself. I am due to have another scan on 04/10, prior to me deciding what treatment to have.

So, Tony, it is very likely that your mind is jumping to the wrong conclusion.

 

Ivan

User
Posted 02 Oct 2021 at 13:48

By the way, a large prostate (yours is 70 cc, mine is 55 cc) often gives rise to a higher PSA reading, so that could account for some of your still relatively low PSA reading. As somebody else on here has said, for the cancer to have spread to the bones your reading is more likely to be in the hundreds rather than under 20. Bob Monkhouse, when he was diagnosed (He obviously had been putting the day off), had a PSA reading over 1300 and by that time there was very little that could be done

User
Posted 02 Oct 2021 at 14:12

For your psa to almost double in 5 weeks is amazing and could either be one of the worst cases of cancer ever seen or something benign which can give a fast rise.

During diagnosis I got an intensely painful hip which I was convinced was me moving to Stage 4.  Although the hospital wouldn't have it.  Your friend Google came up with some fabulous reports at that time.  One in a wide circulation British paper had found 3 top prostate surgeons who'd first suspected cancer from a pain in the hip.   It was clever of the nurse telling me not to read such newspapers when I was first diagnosed, but Google found it and you can't help yourself.

I rang the Prostate Cancer UK nurse and she gave me some good philosophical advice which was 'to not get ahead of yourself and take each step as it comes'.  I've found that useful.

The pain went after about 9 months, the GP said it was arthritus and gave me a psa test.   I still get pains in my back and places and still tell myself this could be it coming back.  Then tell my self 'bull' or words to that effect.

I have a suspicion yours might be a similar case, although you never know.  Such is the stress of diagnosis.

You may not need cancer treatment as your very large prostate might be causing the high increase in psa.  Somewhere in my posts I wrote a figure I'd found that you can calculate the amount of psa generated for each cc increase in prostate above the normal size.  I'm guessing that your psa is much raised by a 70cc prostate.

All the best, Peter

 

User
Posted 02 Oct 2021 at 14:50

Hi Ivan.

i hear what you say about my low(ish) PSA for spread, but like I say that was 5 weeks back....My fevered imagination keeps seeing the cancerous cells running round my innards like malevolent “PAC-MEN” devouring everything in their path.

from my previous researches I’ve found that healthy prostate tissue can pump out 1.5 nano wotsits per 10cc of volume, hence the Uro saying that he wouldn’t worry about my PSA until it went above 10  ie 7x1.5=10.5 I suppose. Still seems a cavalier remark to me....If he said the same to somebody who hadn’t read up on PSA Velocity you could feasibly go from 4 to 9.8 in a year and still assume you were in the clear. I remember seeing an interview with Bob Monkhouse talking about his PC. He said “I said to the doctor, how long do you think I’ve got ? And he said about 10. So I said, months? Years? And he said 9, 8, 7 😁

regards Tony

User
Posted 02 Oct 2021 at 14:59

So, Tony, deduct 10.5 from your reading and, voila, you are under 5!

 

Ivan

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User
Posted 01 Oct 2021 at 16:32
Well, as we all know, 20/20 hindsight vision is a very wonderful thing!

In my opinion, your GP should have referred you to urology, more or less at the start. You should have avoided the inaccurate and perilous TRUS biopsy, which thankfully is being phased out, and had a transperineal biopsy like I did, with 42 samples taken.

I had to look up ‘HOLEP’ and I wonder if it’s the same as the ‘Green Laser’ TURP procedure my 70 year old friend had a while ago, and he is delighted that he is now ‘pissing like a horse’!

It would concern me that I might have some prostate cancer (most likely at your age anyway), and talk to your urologists about it. If you have the TURP and your PSA drops, you can probably breathe a sigh of relief.

Aches and pains are not common with prostate cancer unless it has spread to the bones, and is more likely to be caused by UTIs and BPH.

Best of luck.

Cheers, John.

User
Posted 01 Oct 2021 at 17:06

 Hi John,

thanks for replying. To be fair to my GP, they wanted to refer me in 2014 when my PSA was 3.3....I held off until 2016 when it suddenly leapt to 7.5. I had a trus and a transperineal saturation biopsy, both negative.....I’m kicking myself for not going for the HOLEP Which May have picked up something 3 years ago. (Wish my urologist had told me he was looking to find something....Assuming he was)....As far as I know only TURP and HOLEP allow for the prostate tissue to be examined afterwards and HOLEP is far better....The aches Im getting are all brand new (Which is freaking me out) I’m normally quite fit....Gym 3 times a week, plus swimming etc. I’m due for an MRI in the next few weeks, so it’s a waiting game and I’m not good at waiting ☹️

User
Posted 02 Oct 2021 at 10:24

I wouldn't be too worried that you may have missed the boat on catching this. All of us men are going to get prostate cancer one day. 

You have managed to go from 2014 to 2021 without much prodding, poking, cutting, radiation. That is 7 years of quality life. Fair enough all the prodding and poking may start now, and the cancer may have got a little further. I doubt if your pains are anything to do with the cancer. If your psa was over 300 then that would be different, but with it below 20 it is fairly unlikely it has spread.

Your story about the cost of the G and Ts reminds me of a holiday when I took my elderly parents to France in about 1990, they had never been abroad before. My mom is Irish so she drinks Guiness. For our younger readers I should mention that a pint in a pub in the UK in 1990 was about £1.40. Anyway in Paris we found a bar which served Guiness which is quite unusual in France. We got the drinks and enjoyed them, then the bill came which I paid in francs. Afterwards mom said "how much was the Guiness?" I said "about £8" she said, "I've never had one so bitter". 

Dave

User
Posted 02 Oct 2021 at 11:51
The aches and pains are almost certainly psychosomatic - or you are sleeping restlessly and this is causing muscle tension. I suspect that if the urologist had suspected something sinister, he would have said so and recommended repeating the template biopsy in a few months rather than offering a more invasive procedure that might or might not find a problem.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Oct 2021 at 12:05

Hi Dave,

Thanks for the reply, I’ve been reading a lot of posts here in the last few weeks and I realise that a lot of people have been “through the mill” and no doubt are in much worse places than I, but as my old mum used to say “putting salt in my tea, won’t make yours any sweeter” (we had her committed in the end) 😁 Trouble is Cancer runs in the family (lost my dad at 65 and my mum at 70) so know statistically I wasn’t likely to get my telegram from the queen. Plus I have major OCD and feel the need to have control over everything (within reason) and of course I have no control over this. Considering I had a Pirads 4 in 2016 I’m now thinking that despite the 2 biopsies finding nothing I should definitely have taken up the HOLEP 3 years ago, as anything found then would hopefully have been localised. I’m terrified that those extra 3 years have allowed all kinds of sinister goings-on and I’m now in the T4 group with aches and pains that certainly seem real and all that entails....I’ve been lucky in my life thus far re: health, I’m not a good patient and the thought of HT with all its side effects fills me with dread....Anyhoo it’s a waiting game, so gotta wait

PS re your French Guinness story...Nothing changes I guess, the French haven’t ever forgiven us for Agincourt

 

User
Posted 02 Oct 2021 at 12:19

Hi Lynn, your input is appreciated, I know you’re very knowledgeable in these things. (5 years ago when I first showed up here having a flap, you were very helpful)

The NHS have been very good (thus far) and I have an MRI scheduled for next week and a consultant meeting the week after. As I’m sure you’re aware it’s the waiting that gets you....5 years ago after the 2 biopsies Trus and TP and the “all clear” I was happy to walk away whistling....It’s just the sudden rapid PSA rise which has now got me thinking, that there was something there all along and my new Uro in 2018, suspecting something was amiss, offered me the HOLEP, thinking that any “incidental” cancer would be picked up then. (I foolishly cancelled the op)

I really want my groin and back pain to be my vivid imagination, but what bothers me, is that when I had my scare in 2016 despite being very down and depressed I never “imagined” any aches or pains

Time will tell I guess...Thanks for taking the time to reply

 

User
Posted 02 Oct 2021 at 12:48

For what it is worth, as soon as I started on the treadmill of having a scan and biopsy I started noticing pain in the groin and lower back area and, like you, especially if you google your condition, thought the worse. To date, with my last biopsy having been undertaken on 16/09, my cancer has been found to all be within the prostate itself. I am due to have another scan on 04/10, prior to me deciding what treatment to have.

So, Tony, it is very likely that your mind is jumping to the wrong conclusion.

 

Ivan

User
Posted 02 Oct 2021 at 13:15

Hi Ivan,

 I really hope you’re right regarding my new “symptoms”. I’d much rather they were just me having an “attack of the vapours”, than something more sinister.....I’m not prone to hysteria as a rule, but the “C” word always freaks me out. (having lost both parents and several close relatives to it)

Dr Google is certainly not my friend I know, but at this moment in time I have to feel I’m in some sort of control...I know that a PSA of 15 doesn’t put me in the high risk group, but that was 5 weeks ago and 5 weeks before that it was 8.4.....So my mind is conjuring up figures with too many noughts on the end at the moment.

thank you for taking time to reply. My wife has been trying to “talk me down” bless her, but it helps more to hear it from the people who have “walked the line”

I hope everything is going as well as it can with your “experience”

regards. Tony

User
Posted 02 Oct 2021 at 13:48

By the way, a large prostate (yours is 70 cc, mine is 55 cc) often gives rise to a higher PSA reading, so that could account for some of your still relatively low PSA reading. As somebody else on here has said, for the cancer to have spread to the bones your reading is more likely to be in the hundreds rather than under 20. Bob Monkhouse, when he was diagnosed (He obviously had been putting the day off), had a PSA reading over 1300 and by that time there was very little that could be done

User
Posted 02 Oct 2021 at 14:12

For your psa to almost double in 5 weeks is amazing and could either be one of the worst cases of cancer ever seen or something benign which can give a fast rise.

During diagnosis I got an intensely painful hip which I was convinced was me moving to Stage 4.  Although the hospital wouldn't have it.  Your friend Google came up with some fabulous reports at that time.  One in a wide circulation British paper had found 3 top prostate surgeons who'd first suspected cancer from a pain in the hip.   It was clever of the nurse telling me not to read such newspapers when I was first diagnosed, but Google found it and you can't help yourself.

I rang the Prostate Cancer UK nurse and she gave me some good philosophical advice which was 'to not get ahead of yourself and take each step as it comes'.  I've found that useful.

The pain went after about 9 months, the GP said it was arthritus and gave me a psa test.   I still get pains in my back and places and still tell myself this could be it coming back.  Then tell my self 'bull' or words to that effect.

I have a suspicion yours might be a similar case, although you never know.  Such is the stress of diagnosis.

You may not need cancer treatment as your very large prostate might be causing the high increase in psa.  Somewhere in my posts I wrote a figure I'd found that you can calculate the amount of psa generated for each cc increase in prostate above the normal size.  I'm guessing that your psa is much raised by a 70cc prostate.

All the best, Peter

 

User
Posted 02 Oct 2021 at 14:50

Hi Ivan.

i hear what you say about my low(ish) PSA for spread, but like I say that was 5 weeks back....My fevered imagination keeps seeing the cancerous cells running round my innards like malevolent “PAC-MEN” devouring everything in their path.

from my previous researches I’ve found that healthy prostate tissue can pump out 1.5 nano wotsits per 10cc of volume, hence the Uro saying that he wouldn’t worry about my PSA until it went above 10  ie 7x1.5=10.5 I suppose. Still seems a cavalier remark to me....If he said the same to somebody who hadn’t read up on PSA Velocity you could feasibly go from 4 to 9.8 in a year and still assume you were in the clear. I remember seeing an interview with Bob Monkhouse talking about his PC. He said “I said to the doctor, how long do you think I’ve got ? And he said about 10. So I said, months? Years? And he said 9, 8, 7 😁

regards Tony

User
Posted 02 Oct 2021 at 14:59

So, Tony, deduct 10.5 from your reading and, voila, you are under 5!

 

Ivan

User
Posted 02 Oct 2021 at 15:05

Hi Peter,

The Psa going from 4.8 to 8.4 in 8 months was bad enough, but when I coolly said to the Doc “I’ve had false alarms before and we’ll redo it in 5 weeks and it came in at 14.8 it was a bit of a “Dont Panic” moment.....I suppose if it is some kind of super cancer at least I may get a syndrome named after me....Like “Lou Gehrigs disease”

It currently is the pain in my groin, back and pelvic area that’s freaking me out at the moment, it all seems very very real and not imagined

The three surgeons you speak of I’m familiar with. I’ve seen the news article and there’s a you tube video....One of them sadly died after they found that despite a low PSA (4 something I think) he already had secondary tumours. I believe the one with the hip pain is still practising, and the third was the eminent professor with large fingers who 5 years ago roughly fingered my prostate and declared “Nothing wrong here, that’ll be £700.00 please”

Im aware that until I have the MRI and any subsequent tests I’m just “whistling in the dark” but it does help to speak to people who have “been there, done that”, so thanks for your reply

 
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