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Very High PSA - Cancer Inevitable?

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User
Posted 10 Apr 2018 at 13:12

I'm Pete, 54, generally fit, healthy and vigorous, BMI 23. My mum developed heart failure in the late 1990s and I decided I didn't want to go that way, so since then I've been trying to keep a healthy lifestyle, cycling, running, 5-10 fruit and veg a day, HIIT, using turmeric, olive oil etc since the 'Trust Me..' tv show advocated them.


I've got no urinary problems but for the past few months I've tended to have a stinging sensation when ejaculating, and the amount of ejaculate seemed low.


I went to the GP about this and requested a PSA test (I don't think any mention was made of having this at my 'over 50s' health check - kicking myself now for not asking).


I had a various bloods and a urine test last Friday, all fine except my PSA is 568! I'm shocked and horrified it's so high, as I don't have any of the symptoms usually associated with prostate problems.


Subsequently, the GP did a DRE and my prostate seems a bit enlarged and has nodules. I've got no family history of cancer.


I've got a urologist appointment next Monday, and my hospital seems to have an mpMRI facility, so I should have a proper diagnosis etc in the next few weeks.


My wife and I are devastated, and have been scouring the internet over the past few days trying the get up to speed with all this.


With such a high PSA and the nodules, I'm assuming I almost certainly have prostate cancer, the question being if and how far it's spread.


Does that seem reasonable or am I jumping the gun - any thoughts?


Thanks!

Edited by member 10 Apr 2018 at 14:08  | Reason: Not specified

User
Posted 10 Apr 2018 at 15:00

That seems a reasonable conclusion. The PSA is too high to be explained away by infection or enlarged gland - and the nodules are highly indicative. I am sure that Dr Google has led you to realise that there is a strong chance that the cancer (if indeed it is cancer) has spread so the doctors are unlikely to be able to commit to treatment recommendations until they have all the results back. It is dreadful waiting for results but often human nature is to expect the worst and then if it turns out not to be so bad, there is relief. On an up note, we have men on here with lymph spread who are still here 10 - 15 years later, many men with bone mets are also staying well for many years and if it is contained there are a number of curative treatment options.

If after the long wait it turns out that you simply have a very large prostate, you will know to have an annual PSA test in future.

Do be careful what you google though - many of the American sites are not relevant because diagnosis patterns, outcomes and treatment regimes can be very different to the UK and some UK companies will try to sell you a massive marketing job on false promises and snake oil. Cancer Research UK, Macmillan, PCUK are all reliably and you could also look at You are Not Alone Now, an Australian site with the most amazing search / filter functions.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Apr 2018 at 20:08
Hi, my 55 year old husband (also very fit & healthy) was diagnosed just 3 weeks ago with a PSA of 191 & no symptoms except blood in urine & mild back pain. It was all so sudden. He went to the GP literally 2 days after noticing the blood on the 7th March & well, here we are.

His cancer has sadly spread to the bones & pelvic lymph nodes. The shock was truly horrific & the worst time was definitely waiting for the bone scan results, alongside telling our children. They haven’t bothered with a biopsy as the scan results gave enough information. He started the hormone therapy the same day as diagnosis, with chemotherapy starting in a few weeks. We are slowly coming to terms with all this means.

We have a fairly young family & our youngest son is only 7 years old. He has plenty to live for!

We found the specialist cancer nurse at the urology appointment very helpful & so far he is feeling fine. I believe that keeping fit & healthy really can make a difference.

Anyway, I obviously hope for good news for you but should that not be the case I can reassure you that even only 3 weeks in we are both feeling a little calmer. Life really is carrying on (the children leave us little choice for that :-)) just with a bit more worry but a lot more appreciation of it. Wishing the very best for your appointment.

User
Posted 10 Apr 2018 at 21:38

Originally Posted by: Online Community Member


Thanks for your response, I'll have a look at those sites.
I'll have to temper being realistic with being positive, and see what the next few weeks bring.
This is certainly one part of life's rich pageant I'm not relishing.



In my opinion, the waiting is indeed the worst part, firstly for the Biopsy results from the Cancer specialist nurse, then waiting again for CT and bone scan results, all in all 4 weeks of worry waiting to hear results.


My case is very raw and recent, in fact I only started treatment Sunday 8th, if you would like information on anything i personally experienced from blood test to today please email me.


But the main source of  valid information on all aspects of Prostate Cancer is right here, with the experienced members.


 

User
Posted 12 Apr 2018 at 15:51

Hi Pete,

Welcome to the club no one wanted to join. Don’t be too dispirited about your situation.

Hopefully you will get and you should request, if not insist upon, a multi-parametric MRI scan of your prostate before anything else. And if anything untoward is shown, your subsequent investigation should be a template biopsy under general anaesthetic (if appropriate for your health) guided by the images of your MRI scan.

As two friends of mine advised me, and as I would advise you now, “Don’t let them palm you off with a TRUS (rectal) biopsy”

Cheers, John.

Edited by member 12 Apr 2018 at 16:01  | Reason: Not specified

User
Posted 15 Apr 2018 at 17:29

There is no advantage in speculating as various hospitals and urologists can adopt differing approaches, particularly when the PSA is so high in terms of what scans/biopsies may be offered. The main thing is that you are to see a urologist and are now in the 'system'.

Barry
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User
Posted 10 Apr 2018 at 15:00

That seems a reasonable conclusion. The PSA is too high to be explained away by infection or enlarged gland - and the nodules are highly indicative. I am sure that Dr Google has led you to realise that there is a strong chance that the cancer (if indeed it is cancer) has spread so the doctors are unlikely to be able to commit to treatment recommendations until they have all the results back. It is dreadful waiting for results but often human nature is to expect the worst and then if it turns out not to be so bad, there is relief. On an up note, we have men on here with lymph spread who are still here 10 - 15 years later, many men with bone mets are also staying well for many years and if it is contained there are a number of curative treatment options.

If after the long wait it turns out that you simply have a very large prostate, you will know to have an annual PSA test in future.

Do be careful what you google though - many of the American sites are not relevant because diagnosis patterns, outcomes and treatment regimes can be very different to the UK and some UK companies will try to sell you a massive marketing job on false promises and snake oil. Cancer Research UK, Macmillan, PCUK are all reliably and you could also look at You are Not Alone Now, an Australian site with the most amazing search / filter functions.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Apr 2018 at 20:55

Thanks for your response, I'll have a look at those sites.
I'll have to temper being realistic with being positive, and see what the next few weeks bring.
This is certainly one part of life's rich pageant I'm not relishing.

User
Posted 10 Apr 2018 at 21:38

Originally Posted by: Online Community Member


Thanks for your response, I'll have a look at those sites.
I'll have to temper being realistic with being positive, and see what the next few weeks bring.
This is certainly one part of life's rich pageant I'm not relishing.



In my opinion, the waiting is indeed the worst part, firstly for the Biopsy results from the Cancer specialist nurse, then waiting again for CT and bone scan results, all in all 4 weeks of worry waiting to hear results.


My case is very raw and recent, in fact I only started treatment Sunday 8th, if you would like information on anything i personally experienced from blood test to today please email me.


But the main source of  valid information on all aspects of Prostate Cancer is right here, with the experienced members.


 

User
Posted 12 Apr 2018 at 15:51

Hi Pete,

Welcome to the club no one wanted to join. Don’t be too dispirited about your situation.

Hopefully you will get and you should request, if not insist upon, a multi-parametric MRI scan of your prostate before anything else. And if anything untoward is shown, your subsequent investigation should be a template biopsy under general anaesthetic (if appropriate for your health) guided by the images of your MRI scan.

As two friends of mine advised me, and as I would advise you now, “Don’t let them palm you off with a TRUS (rectal) biopsy”

Cheers, John.

Edited by member 12 Apr 2018 at 16:01  | Reason: Not specified

User
Posted 15 Apr 2018 at 11:59

Thanks all, that's really helpful.


That Aussie site http://www.yananow.org was reassuring, as it noted a US pilot whose result was above 12000, and he was working for years after that.


I'm having my first consultation with a urologist tomorrow; any thoughts on what I can expect?


Originally Posted by: Online Community Member
...As two friends of mine advised me, and as I would advise you now, “Don’t let them palm you off with a TRUS (rectal) biopsy”...


John, please could you help me get my head around that?


From what I've read so far, the template type biopsy takes a lot more samples so should give a greater chance of finding problem cells, but doesn't having an mpMRI scan first help to identify where the problem areas are, then the biopsies can include those areas and so help to greatly reduce 'false negatives' from either biopsy type?


Stephen Fry seems to have had the TRUS type, and as it seems apparent he was having at least some of his treatment being done privately, cost probably wasn't as issue http://www.stephenfry.com/2018/02/mischievous/


Cheers, Pete

User
Posted 15 Apr 2018 at 17:29

There is no advantage in speculating as various hospitals and urologists can adopt differing approaches, particularly when the PSA is so high in terms of what scans/biopsies may be offered. The main thing is that you are to see a urologist and are now in the 'system'.

Barry
User
Posted 15 Apr 2018 at 20:08
Hi, my 55 year old husband (also very fit & healthy) was diagnosed just 3 weeks ago with a PSA of 191 & no symptoms except blood in urine & mild back pain. It was all so sudden. He went to the GP literally 2 days after noticing the blood on the 7th March & well, here we are.

His cancer has sadly spread to the bones & pelvic lymph nodes. The shock was truly horrific & the worst time was definitely waiting for the bone scan results, alongside telling our children. They haven’t bothered with a biopsy as the scan results gave enough information. He started the hormone therapy the same day as diagnosis, with chemotherapy starting in a few weeks. We are slowly coming to terms with all this means.

We have a fairly young family & our youngest son is only 7 years old. He has plenty to live for!

We found the specialist cancer nurse at the urology appointment very helpful & so far he is feeling fine. I believe that keeping fit & healthy really can make a difference.

Anyway, I obviously hope for good news for you but should that not be the case I can reassure you that even only 3 weeks in we are both feeling a little calmer. Life really is carrying on (the children leave us little choice for that :-)) just with a bit more worry but a lot more appreciation of it. Wishing the very best for your appointment.

User
Posted 13 May 2018 at 13:12

After CT and bone scans, and a TRUS biopsy, I've had my diagnosis.


9 of the 11 biopsies had more than 50% cancerous cells, Gleason 4+4 = 8.


An MPMRI was considered unnecessary, as it was thought very unlikely that the cancerous regions would be missed by the biopsies.


Cancer has spread to the pelvic lymph nodes, and sites on a couple of ribs, T8 of my spine, and the left of my pelvis.


Beyond the hormone therapy that I'm already on, chemo seems the only way forward, so I've been referred to oncology; cue another waiting list.


So, it's not the result we were hoping for, but at least the cancer isn't the most aggressive type, and none of the secondaries are 'super scans'.


Time to read up on chemo, and start a new conversation when I've got queries / news.


 

 
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