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risks of Gleason 3+4

User
Posted 24 Jan 2020 at 16:56

I have had the template targeted biopsy results and have been advised that my best option would be active surveillance. I had assumed the biopsies would be positive for PCa and maybe 3+4 isn't the best but isn't quite as bad as it might have been. I asked and wasted it was 9 cores with 2 positive and 5% grade 4, i confirmed that they had taken samples from the the other side despite targeted biopsy and so said confined to one side (always assuming it hasn't missed any). 


Stupidly my brain wasn't functioning so well and i didn't get the answer was it 2a 2b or 2c and given that he didn't tell me and in previous discussion he tended to leave out the bit that was not so good (I had to ask again what my Pi-RADS was after he said probably nothing and it was PI-RAD 4) i guess it might be 2c.


I get that this is all unsure territory but 3 monthly checks on PSA and another MRI in 12 months his view was this was very lily slow growing and might never bother me given i am 69 and my current PSA is 4.1 so unless the anxiety is too much or it something suddenly changes - which he says is very unlikely active surveillance was the teams recommended choice, but of course up to me.


So, the logical side of me says go with that and avoid the side effects and trauma of RP or other options which would impact on me greatly given my other disabilities. The other side says .... 5% 4 is 5% not good cell changes to potentially more aggressive form of PCa. Also my PSA though low compared to many first presentations has gone from 1.9 in 2017 to 2.3 16 months later and then 4.1 now. ...


Just wondered if anyone has experience on this and what the advice has been, or how long it can remain before action is needed .... ?


 


 


 


 


 

User
Posted 25 Jan 2020 at 12:58

One key thought - radical treatment is permanent whether that be surgery, HIFU, radiotherapy but AS is not a permanent choice. Some men stay on AS for many years or even (the lucky few) for the rest of their lives. For others, AS is a holding position while they tie up loose ends, complete a job, finish having a family, take some thinking time or until diagnostics show that something might be changing.


AS could be for 6 months or 20 years. What is essential is that it is done properly. 

Edited by member 25 Jan 2020 at 12:59  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Jan 2020 at 11:14

Hi I had Gleason 3+4=7 and PSA 2.19 with 5 cores out of 20 samples positive  and had Brachytherapy in September 2016 and was offered radical surgery by the first specialist  but after a lot of reading up on side affects 


of both procedures and experience of a friend that had brachytherapy. But Lyn has come up with the comment about 4 not getting more aggressive so that just made my morning a lot better thanks Lyn another thing for me to lookup.


I think its up to you how long you go with AS and it gives you more time weigh up the options and possible side affects.I was worried at the time that i had chosen the best option but three years on with PSA down to 0.22 and yearly blood tests i am happy with the results.


Good luck John.

User
Posted 24 Jan 2020 at 19:47
They wouldn't offer AS with a T2b and you have been told it isn't in both sides so not T2c so I think you must assume yourself be a T2a. Two positive cores in a targeted biopsy suggests a very small tumour.

G4 pattern doesn't become a more aggressive pattern as times goes on, it usually stays G4.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jan 2020 at 01:29

I posted a comment on this thread. Relating to Ian He who seems to have a very similar diagnosis to yours. 


https://community.prostatecanceruk.org/posts/t23002-Pirads-level-5/page2#post233314


Basically I'm a proponent of Active Surveillance, subject to a few conditions I mention in the other post. I'm not saying it's right for you, but give it very serious consideration. 

Edited by member 25 Jan 2020 at 01:37  | Reason: Not specified

Dave

User
Posted 27 Jan 2020 at 21:22

A had his Focal Laser Ablation under local at the Sperling Prostate Centre in Florida ( USD 30,000 out of pocket in 2017) . We were offered a repeat or a HIFU and I believe both would have been local. The London focal HIFU last week was a general. 


Good Luck


Clare

User
Posted 28 Jan 2020 at 15:03

Nomis


I'd be tempted to email the UCLH team and get a view. They are normally pretty accommodating and will give reasons for approach etc.


TG



 







 




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User
Posted 24 Jan 2020 at 19:14
My mate is in his seventies (G 3+4) and has been on active surveillance for five years and is doing fine. In fact his regimen is more like constant surveillance!

So if you are offered AS by your clinicians, go for it as long as they think you can get away with it.

Cheers, John.
User
Posted 24 Jan 2020 at 19:47
They wouldn't offer AS with a T2b and you have been told it isn't in both sides so not T2c so I think you must assume yourself be a T2a. Two positive cores in a targeted biopsy suggests a very small tumour.

G4 pattern doesn't become a more aggressive pattern as times goes on, it usually stays G4.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jan 2020 at 20:53

The only experience of this I have is that I was offered AS if I had a template biopsy.  Mine was said to be 4+3 based on finding 5% on one pin and my psa was 9.9.   It seemed like putting off the inevitable.


Your psa rose 0.4 in the first 18 months,  1.8 in the next 18 months.   Although that's a rough guess without having real dates.


 It can't be certain, but in 2021 using simple graphs it could be 7.


Some doctors say beware over treatment, perhaps you could let it go a bit longer as that 7 might be less if the next psa test is not the expected rate.


I chose surgery and the surgeon said the MRI showed the lesion was close to the edge, 13mm in the apex.  In the apex seemed reasonable at was away from the bladder which you might hope is not affected.   13mm seemed fairly large although apparently it's middling.   You might ask what the MRI shows about size and location as that might give you a bit more confidence in a decision.


With all this you can only make assumptions and probabilities.  That's where the anxiety factor comes in.


I'm just a patient who thinks about it too much.  All the best.

User
Posted 25 Jan 2020 at 01:29

I posted a comment on this thread. Relating to Ian He who seems to have a very similar diagnosis to yours. 


https://community.prostatecanceruk.org/posts/t23002-Pirads-level-5/page2#post233314


Basically I'm a proponent of Active Surveillance, subject to a few conditions I mention in the other post. I'm not saying it's right for you, but give it very serious consideration. 

Edited by member 25 Jan 2020 at 01:37  | Reason: Not specified

Dave

User
Posted 25 Jan 2020 at 09:22
Basically it boils down to this: it will need treating at some point. Do you want to get it over and done with, or put it off to the future? We're all different, but personally I wouldn't want to have it hanging over me.

Best wishes,

Chris
User
Posted 25 Jan 2020 at 12:03

Yes - agree with all on this one...very personal choice and I went ahead with surgery due to my anxieties and 'wanting it out', but if you are more laid back then (lucky you) AS may be the way to go! Surgery was excellent for me but did come with a bunch of effects so not something to be rushed into!


I would say, go with your gut and the advice here :-)


 


Mark

User
Posted 25 Jan 2020 at 12:54

Thanks for the thoughts and experiences. I guess I feel I need time to breathe and just get myself calm and consider things before I embark upon anything and it does seem with my PSA at 4.1 and T2 (a or b still checking that !) and though Gleason 3+4 I have a little time to rest and take it all in without any immediate extra risk. I guess I would like more info in position and sizes and then the possibilities of say HIFU if it does upgrade or PSA rises.


Of course managing anxiety is an issue but I have had some experience in that with other ongoing health issues so maybe that’s less problematic for the moment unless things change quickly.


My only extra worry is I had no CT scan and as I live with ongoing muscular skeletal pains from my childhood so what is normal for me may mask bone spread mets. So despite being told the PSA and profile shows no likelihood of mets - that is my main late night OCD thought!

Edited by member 25 Jan 2020 at 13:59  | Reason: Not specified

User
Posted 25 Jan 2020 at 12:58

One key thought - radical treatment is permanent whether that be surgery, HIFU, radiotherapy but AS is not a permanent choice. Some men stay on AS for many years or even (the lucky few) for the rest of their lives. For others, AS is a holding position while they tie up loose ends, complete a job, finish having a family, take some thinking time or until diagnostics show that something might be changing.


AS could be for 6 months or 20 years. What is essential is that it is done properly. 

Edited by member 25 Jan 2020 at 12:59  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Jan 2020 at 11:14

Hi I had Gleason 3+4=7 and PSA 2.19 with 5 cores out of 20 samples positive  and had Brachytherapy in September 2016 and was offered radical surgery by the first specialist  but after a lot of reading up on side affects 


of both procedures and experience of a friend that had brachytherapy. But Lyn has come up with the comment about 4 not getting more aggressive so that just made my morning a lot better thanks Lyn another thing for me to lookup.


I think its up to you how long you go with AS and it gives you more time weigh up the options and possible side affects.I was worried at the time that i had chosen the best option but three years on with PSA down to 0.22 and yearly blood tests i am happy with the results.


Good luck John.

User
Posted 26 Jan 2020 at 12:28

I guess my issue is, being both a nerd and working around medics and health care lots and working in a medical school for some years in my working life, I like to have ALL the data. including what I don’t know what to ask ... if that makes sense. Not all patients are like this but I am, and I know medics gave different styles. 


I am for instance unsure if I have PT2a or b - the initial statement was yes, you do have ‘a little bit of prostate cancer’ and I had to ask the T number.  I am also unsure where exactly the lesions are or what the size of my prostate is. It is like pulling teeth getting an answer however personally good the consultant is. I think this is what makes me nervous around AS. 

Edited by member 26 Jan 2020 at 13:53  | Reason: typo clarifications

User
Posted 26 Jan 2020 at 13:12

It can also depend on who you're asking.  Surgeons tend to favour surgery etc.  


When I was diagnosed it was by a Urologist who didn't do prostate cancer operations.  He seemed a bit vague about the location of my lesion saying it was near the edge but there are areas of the prostate they couldn't see easily so recommended a template biopsy if I had AS.  It was classed as T2a possibly T3, but was later T2a.


When I chose surgery and met the surgeon he was very matter of fact saying it was 13mm and located in the apex drawing a diagram and showing what he'd do.   I don't know why the urologist didn't do that.


Also as Johntheprint says above brachytherapy is something to be looked at.   I didn't have any choice in my opinion with a 4+3 close to the edge.  I was always worried about stray cells.


I'm also interested in what Lyn said about it not becoming more aggressive as mine was fully diagnosed in the lab and came out 4+4, so the single pin on the biopsy was wrong no surprise.   I've always thought it would develop to 5+5 if left.   I'd also like to know if mets are the same grade as the core lesion if they don't develop. Can you have a 3+3 met etc.


As a final point you said you worried about not differentiating between met bone pain and your other pains.  We all have that problem.  I got a massive hip pain during diagnosis and was convinced it had spread.  It improved but still niggles, arthritus they say.  They also said everyone thinks every pain is related so it's psychological to a degree.   Also as far as I know, and someone may correct me, mets only get painful when they're well hold and you'd be a T4.


 


 


 

Edited by member 26 Jan 2020 at 13:15  | Reason: Not specified

User
Posted 26 Jan 2020 at 13:34

2 positive cores from 9 makes it unlikely that you have a tumour covering more than 50% of that side of your prostate, and AS would not usually be offered for T2b anyway. Also worth noting that AS is not usually offered for G3+4 unless the tumour is very small and the % of 4 is very low.


https://prostatecanceruk.org/prostate-information/prostate-tests/scans-to-see-if-your-cancer-has-spread#t-stage


T score is only an estimate at this stage. It might be more useful to pin your specialist down on the % cancerous of each of the 2 positive cores and whether the cancerous areas of each core were well contained or moving close to the edge or urethra. That’s the kind of information the MDT will have considered when deciding that AS, surgery and RT were all creditable options.

Edited by member 26 Jan 2020 at 19:22  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Jan 2020 at 18:43

I am T2a and was offered External Beam RT or RP. Gleason 3+4 with 10% of the biopsy cells sampled graded 4. I opted for surgery and had it yesterday. I’m 55 in March.


I wasn’t offered AS but if I had I would still have opted for treatment.

Edited by member 26 Jan 2020 at 23:06  | Reason: Not specified

Darren Waters

User
Posted 26 Jan 2020 at 20:44

Great move Darren


Hope you have a good recovery. I’m 8.5 weeks post surgery so it’s not too bad in the grand scheme of things.


TG

Edited by member 26 Jan 2020 at 20:46  | Reason: Not specified

User
Posted 27 Jan 2020 at 00:33

Darren, hope the recovery goes well and TechGuy, also seems you are happy with the choice. I guess i have a slight issue in as far as i think the impact of just the surgery and anesthesia alone would be quite dramatic with me. I am not saying i wouldn't take the risk, but it would probably take me 3-6 months to recover compared to 2-3 weeks for an average person.


I guess given my age and current level of Ca I would like to know what else might work. What treatments other than hormones and radiotherapy have a good outcome which can be done on spinal block and not GA, such as Proton Beam and HIFU (though i think HIFU requires a GA but not sure).

User
Posted 27 Jan 2020 at 03:55
Click on my profile / avatar and read my story of my surgery and ten-day(ish) recovery.

Choose your surgeon wisely, if you opt for that.

Best of luck.

Cheers John.
User
Posted 27 Jan 2020 at 16:18

Nomis


yes very happy indeed. No pad needed and not leaked for about a week now. I still wear a pad when out just for reassurance but no issues. No ED issues at all which I am amazed with. Same dimensions and quality erections that I had pre op. 


Yeah GA impact a consideration. The epidural reduced the amount of post op drugs needed. I was wide awake pretty quick post op. Took a minute or two after opening my eyes to string the words together to ask about margins. I felt like a windows 98 first edition machine booting up. I spent quite a bit of pre-op time getting my BMI from 29 to 25 plus a lot of strength and cardio training. My view was to get as match fit as possible for the surgery. Absolutely no regrets of anything. First PSA bloods next week so a little on edge about that but it will be what it will be I guess.


yes HIFU is done under GA. proton beam not needed but costs can be very high. I was very tempted down this path but my understanding of the cell pathology told me it would just be a matter of time until other rumours popped up so RP logical in that sense. Still a metastatic disease so possibly of distant seeds but getting shot of main issue seems a fair strategy. If only at minimum to buy time where I view immunotherapy being more evolved in years to come.


TG

User
Posted 27 Jan 2020 at 21:22

A had his Focal Laser Ablation under local at the Sperling Prostate Centre in Florida ( USD 30,000 out of pocket in 2017) . We were offered a repeat or a HIFU and I believe both would have been local. The London focal HIFU last week was a general. 


Good Luck


Clare

User
Posted 27 Jan 2020 at 23:19

Seems the GA vs local is a developing area or maybe just centre and or cost dependent when it comes to some non conventional survey or other treatments such as HIFU. 

User
Posted 28 Jan 2020 at 09:16
Yes. The Sperling prostate centre is not a hospital so it doesn’t have operating theatres and the treatments take place inside the mri machine so I don’t think a general would ever be used. Guessing however.

Good luck
User
Posted 28 Jan 2020 at 12:56

A comparatively small number of cases using HIFU have been done using a spinal block or epidural where appropriate. I believe those administering the treatment prefer a patient to be anesthetized because it is important that the man does not move and for the patient, the position he is placed in is very unnatural for this procedure.

Edited by member 28 Jan 2020 at 13:03  | Reason: Not specified

Barry
User
Posted 28 Jan 2020 at 14:30

OBarry


Yes, I remember a video article with Prof E (UCLH) saying he preferred GA for this reason. With nanoknife GA is mandatory as the pulses have to be accurately timed with cycles of the heart so as not to disrupt the rhythm.


TG

User
Posted 28 Jan 2020 at 14:40
OK interesting, the issue remains then what are the options when a GA is contra indicated and does it mean those centres that offer HIFU and other such treatments that require similar precision and accuracy under a spinal are taking a risk?
User
Posted 28 Jan 2020 at 15:03

Nomis


I'd be tempted to email the UCLH team and get a view. They are normally pretty accommodating and will give reasons for approach etc.


TG



 







 




 
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