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Deciding what to do

User
Posted 25 Jun 2018 at 17:03

Back in January I noticed that I was peeing more frequently and didn’t seem to be emptying my bladder, particularly at night. Off to the GP and had a PSA test, which came back at 4.7. As this was raised, I was referred to a urologist.

A further PSA test with the urologist and the result was 5.19. The urologist didn’t seem too worried and said it may just be an enlarged prostate, so I was booked in for an ultrasound and cystoscopy. I was not looking forward to the latter one bit and felt like running out of the hospital, but it was not as bad as I thought it was going to be. A bit of discomfort as it passed my prostate due to it being enlarged and stings a bit when you pee afterwards. These tests showed my prostate was enlarged and I was hoping that would be the end of it.

However, the urologist thought we should do an MRI scan to make sure there wasn’t anything nasty present. What a machine that is, and what a noise it makes. This showed a slight abnormality on the prostate but the urologist didn’t think it was anything to worry about but booked me in for a TRUS biopsy.

Another procedure I wasn’t looking forward to, but again, it wasn’t as bad as I thought. The procedure was uncomfortable but there was no pain and I didn’t even feel the local anaesthetic. A bit sore later when that wore off but a couple of paracetamol took care of it.

A week or so later it was time to get the results. Two of the samples showed signs of cancer and even though I was prepared for the worst it was still a shock. The Gleeson score was 6 (3+3) and it was localised, so I suppose there was something to be pleased about.

The next step was deciding what to do. I was expecting to be told what I should do next but was told that there were several options and it was up to me. I suppose it is nice to have options but which one do I choose? I spoke to one of the nurses on this site, who was great and went through all the pros and cons, but ultimately it was my decision.

I’m 59 and reasonably fit and healthy so I though surgery would be the best option. Why not just get rid of it? Hopefully the side effects would not be permanent. With active surveillance, the cancer is still there and how do I know that the biopsy has not missed something?

Having made my mind up, I was referred to a urologist who carries out the robotic surgery and saw him last week. Having reviewed my notes he asked me why I wanted surgery. I gave him the same reason as above. He promptly told me that he wouldn’t operate on someone who has a low level of cancer, as shown in my results. What he did suggest was that I have a template biopsy, which is more accurate. If this confirms the previous results he suggested that I go on active surveillance. If the biopsy shows something more aggressive, surgery can be considered. To me this sounded like an excellent plan.

So the biopsy is taking place next month and I will see what that shows. I certainly feel more reassured by the expert telling me what he thinks I should do, rather than having to make up my own mind.

To be continued.

User
Posted 26 Jun 2018 at 17:15
All too often Nick, the TRUS biopsy has to be succeeded by the far more accurate template biopsy.

Once you have the results from that you can see what’s what.

If you are still 3+3=6 and stage T2aN0M0 you are a prime candidate for active surveillance.

Don’t rush into anything involving scalpels, drugs or atoms!

User
Posted 27 Jun 2018 at 09:57
Hi Nick,

I was diagnosed in late 2012 with similar statistics to yourself. The diagnostic process was a little different then and I had TRUS which was followed by MRI after I decided to take the AS route.

I have since had 2 more TRUS biopsies and 5 more MRIs and many DREs. The AS is ongoing and hopefully will continue for a lot longer.

If you choose AS my advice would be to be proactive, don't rely on others to arrange PSA tests and make sure consultant appointment intervals are adhered to. I found that my hospital appointments department considered my checks to be low priority, and so tried to extend the intervals. I have full confidence in my consultant and specialist nurses and feel that this is essential if AS is going to work.

Alan

User
Posted 04 Aug 2018 at 14:12

Latest news.  Template biopsy carried out with 29 samples taken.  One core showed Gleeson 6, 5mm, so similar results to TRUS biopsy.  Consultant recommended leaving prostate alone and going on AS, so that is what I have decided to do.  Plan is for PSA every three months with mpMRI annually and further template biopsy if required.  I feel a lot happier about going on AS having had the template biopsy.

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User
Posted 25 Jun 2018 at 17:24
Nick, you have been well advised. With this very low level of PCa, if confirmed by the template biopsy, you could have many decades of AS ahead of you.

Good Luck

AC

User
Posted 26 Jun 2018 at 15:20

Thanks AC.  At least with having a template biopsy I can make a more informed decision about having a prostatectomy or going on active surveillance.

Best wishes,  Nick

User
Posted 26 Jun 2018 at 17:15
All too often Nick, the TRUS biopsy has to be succeeded by the far more accurate template biopsy.

Once you have the results from that you can see what’s what.

If you are still 3+3=6 and stage T2aN0M0 you are a prime candidate for active surveillance.

Don’t rush into anything involving scalpels, drugs or atoms!

User
Posted 26 Jun 2018 at 23:23

Hi Nick

There are so many pros and cons.

I too had a low PSA like yourself and a non aggressive cancer but I was advised by my consultant to have a RP. I had it just over a year ago and although there are the obvious side effects I'm still glad to be rid of the cancer.

I also have friend who has PC and it was suggested that he have active surveillance which he did for a while. Eventually he had a RP and it was found that the cancer had spread so then had to undergo RT. He says with hindsight he would have had the operation as soon as he was diagnosed with the cancer. 

Its a very difficult decision which only you can make.

Best Wishes

 

User
Posted 27 Jun 2018 at 00:14
Hi Nick,

With a Gleason of 3+3=6 your chance of your PCa needing radical treatment soon is very low. Your surgeon knows this and also that many men are treated and suffer adverse side effects unnecessarily or prematurely. On the other hand, a very small number of men on AS would have benefitted by having radical treatment earlier it has subsequently been found.

Should you decide you would prefer to have it removed, I am sure you could find a surgeon who would do this. The deccision on whether to have AS, RP or another treatment is yours.

Barry
User
Posted 27 Jun 2018 at 09:57
Hi Nick,

I was diagnosed in late 2012 with similar statistics to yourself. The diagnostic process was a little different then and I had TRUS which was followed by MRI after I decided to take the AS route.

I have since had 2 more TRUS biopsies and 5 more MRIs and many DREs. The AS is ongoing and hopefully will continue for a lot longer.

If you choose AS my advice would be to be proactive, don't rely on others to arrange PSA tests and make sure consultant appointment intervals are adhered to. I found that my hospital appointments department considered my checks to be low priority, and so tried to extend the intervals. I have full confidence in my consultant and specialist nurses and feel that this is essential if AS is going to work.

Alan

User
Posted 27 Jun 2018 at 14:38

Thanks Bollinge,  I see you have had a meeting with the robot - hope all is going well.  I don't really want to have bits removed or end up glowing in the dark but the template biopsy should allow me to make a more informed decision.

Nick

User
Posted 27 Jun 2018 at 14:48

Thanks Rich.  You are right - it is not an easy decision to make and one that you hope you get right.  Glad to hear you are OK.

Nick

 

User
Posted 28 Jun 2018 at 00:19

my husband is in exactly the same place as you.  He hasn't decided his treatment yet but is having a template biopsy on the 5th and will explore his options after the results of that.  His Gleason score is the same as yours.  He is 52. Hope you get a good result on your biopsy.  🤞

 

User
Posted 28 Jun 2018 at 12:33

Thanks Barry,  I'm hoping that the template biopsy results will also be low, in which case, I will feel more comfortable going on AS.

Nick

User
Posted 28 Jun 2018 at 12:34

Thanks Rich, that is good advice.  As you say, it is a difficult decision.

Nick

User
Posted 28 Jun 2018 at 12:37

Thanks Tracey,  I hope the biopsy goes well and the results are favourable.  It would be interesting to know what he decides to do.

Nick

User
Posted 04 Aug 2018 at 14:12

Latest news.  Template biopsy carried out with 29 samples taken.  One core showed Gleeson 6, 5mm, so similar results to TRUS biopsy.  Consultant recommended leaving prostate alone and going on AS, so that is what I have decided to do.  Plan is for PSA every three months with mpMRI annually and further template biopsy if required.  I feel a lot happier about going on AS having had the template biopsy.

User
Posted 04 Aug 2018 at 17:37

Hi there,

 

it it sounds like you have had the best advice and best ‘treatment’ .. 

really rear to here a surgeon suggest AS! Ours wanted my oh to book in immediately to remove the prostate after being diagnosed with a. G6 tumour.

really great thread.

 

thanks for sharing

Clare

User
Posted 05 Aug 2018 at 22:36

Nick

Active surveillance is a good option for low risk prostate cancer like Gleason 6. And a template biopsy is a good idea to make sure there's no higher res disease that the other biopsy missed. Surgery to remove the prostate is tho a good option in young fit men with Gleason 6 if there's a lot of it, and the template should tell you that. 

Good luck.

PS

User
Posted 05 Aug 2018 at 23:53
Good outcome Nick - AS is a really good option for some men when done properly
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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