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Gleeson 9 - PSA 60 diagnosis.

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User
Posted 05 Feb 2019 at 17:29

Hello all, obviously I'd rather not be here, but I've just got back from the hospital with my father and feel a little helpless and unsure about what the diagnosis means.

Back story: My father is 77 and been having prostate problems for past 14 years. He's had PSA level of 92 last spring and been coming down since. I believe they said his prostate was 200g. He self catheters most nights. He had a legion spotted for some time on his scans, somehow no mention of cancer until today... but now this is his 4th biopsy, and it seemed to be worse news than I expected: 

Gleeson 9 with PSA 60 with 'suspicious' looking lymph nodes.

He has a bone scan and another scan planned for next 2 weeks and a treatment plan on the 19th of Feb. They mentioned hormone therapy. 

I was prepared for 'cancer' but this caught me off guard as it seemed to sound quite aggressive. I'd really appreciate if someone can help explain what's going on. I think it sounds bad, and I can handle that if that's the case. He's had a good life and has a lot of family around him. Any info would be much appreciated.

Thanks. 


User
Posted 05 Feb 2019 at 22:51

It's curious that his psa is coming down from 92 to 60 without treatment.  It's still pretty high but high psa doesn't mean it's cancer. A 200g prostate is very large and could be a lot of the reason for the high psa.  

The Gleason 9 is quite a high score as well which does confirm it's cancer but without the scans it's size and location are only a guess.  If he had a template biopsy it would give a better definition.    I don't know how they'd say the lymph nodes might be involved without a scan.

As he's 77 an operation is unlikely as they usually limit the age to 75.  So hormones would be a safety first as they'd offer them before Radiotherapy if he's offered that.   If the scans aren't good then radiotherapy is unlikely to be offered and hormones would then be the likely initial treatment as part of a chemical treatment plan.  So hormones are likely whatever.

I hope that is helpful, let us know if there's anything that needs clarifying.  Others may answer as I'm just a patient and there are more expert people on here.  All the best Peter

User
Posted 05 Feb 2019 at 23:07
Even if it is as bad as you fear, we have men on this forum who have stayed well on hormones for many years; aggressive doesn't actually mean what you think it means. Aggressive would be better replaced by 'high risk' and your dad's cancer is high risk because his Gleason is 9 (the cancer cells are significantly distorted from normal) - but there are other factors that you don't seem to be aware of yet, such as what percentage of the biopsy cores were cancerous, and what percentage of each core. If it has taken 4 biopsies to find the cancer, then it may be only a small area of the total.

If they are commenting on the lymph nodes, that suggests that either they did an image guided biopsy or there are other reasons to be concerned about his lymphatic system - does he have lymphodema (water retention), for example?

As Peter says, your dad's prostate is huge so the PSA may be more to do with prostate size than amount of active cancer present - this would be supported by the falling rate since last year as he may have had some infection at the time.

One way or another, the hormones may do something to reduce the size of his prostate and remove the need for self-catheterisation. Out of interest, has he been on any medication for enlarged prostate or to help with urinating?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Feb 2019 at 01:03

Ah, is he still on finasteride? Does the fall from 92 to 60 coincide with when he started taking it?

They had seen a lesion in his prostate, not a legion. The lesion is probably where they targeted the biopsy cores. It just means a suspect area ... infection can look like a lesion on a scan.

 

Your comment about the PSA of 92 being like a 92% chance of cancer is not correct. We have had men on here with PSA nearly that high who were given the all clear, and men who had PSA of 3.6 with extensive mets. The PSA cannot be depended upon to indicate how serious the situation is; it simply indicates that further investigations are warranted. Obviously when it gets up into the hundreds it is more indicative - the highest we have had on here was 13,000 and the highest number my husband's urologist has ever seen was 160,000.

 

 

Edited by member 06 Feb 2019 at 01:12  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Feb 2019 at 15:35

Originally Posted by: Online Community Member
It's only 13 days and we don't have any appointments arranged for scans, is that normal, or should I chase them up?

Yes, you need to be proactive in these situations with the NHS - speak to the consultant’s secretary about your concerns and enquire as to who actually books the scan appointments.

Cheers, John.

User
Posted 06 Feb 2019 at 17:18
It is good news that dad isn't currently on finasteride ... It actually cuts the PSA in half so gives a falsely low picture of the situation. What I mean is that if dad was currently on finasteride then his PSA would really be 120 not 60, but some GPs smdont seem to know that.

Tamsulosin does not affect PSA. Phew!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Feb 2019 at 19:54
Helpingmydad,

I'm nearly 12 years on from a Gleason 9 high PSA diagnosis, so don't despair. I have lots more years in me yet at 75. That your Dad still manages cricket and car maintenance is fantastic. The fitter he is, the better he'll withstand further treatment. Keep us informed of developments. Everyone one on here is keen to help based on what weve been through or have helped others through. You are amongst friends.

Chin up.

AC

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User
Posted 05 Feb 2019 at 22:51

It's curious that his psa is coming down from 92 to 60 without treatment.  It's still pretty high but high psa doesn't mean it's cancer. A 200g prostate is very large and could be a lot of the reason for the high psa.  

The Gleason 9 is quite a high score as well which does confirm it's cancer but without the scans it's size and location are only a guess.  If he had a template biopsy it would give a better definition.    I don't know how they'd say the lymph nodes might be involved without a scan.

As he's 77 an operation is unlikely as they usually limit the age to 75.  So hormones would be a safety first as they'd offer them before Radiotherapy if he's offered that.   If the scans aren't good then radiotherapy is unlikely to be offered and hormones would then be the likely initial treatment as part of a chemical treatment plan.  So hormones are likely whatever.

I hope that is helpful, let us know if there's anything that needs clarifying.  Others may answer as I'm just a patient and there are more expert people on here.  All the best Peter

User
Posted 05 Feb 2019 at 23:07
Even if it is as bad as you fear, we have men on this forum who have stayed well on hormones for many years; aggressive doesn't actually mean what you think it means. Aggressive would be better replaced by 'high risk' and your dad's cancer is high risk because his Gleason is 9 (the cancer cells are significantly distorted from normal) - but there are other factors that you don't seem to be aware of yet, such as what percentage of the biopsy cores were cancerous, and what percentage of each core. If it has taken 4 biopsies to find the cancer, then it may be only a small area of the total.

If they are commenting on the lymph nodes, that suggests that either they did an image guided biopsy or there are other reasons to be concerned about his lymphatic system - does he have lymphodema (water retention), for example?

As Peter says, your dad's prostate is huge so the PSA may be more to do with prostate size than amount of active cancer present - this would be supported by the falling rate since last year as he may have had some infection at the time.

One way or another, the hormones may do something to reduce the size of his prostate and remove the need for self-catheterisation. Out of interest, has he been on any medication for enlarged prostate or to help with urinating?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Feb 2019 at 00:34
Thanks so much. Having a pretty tough day and it really helps.

I've lived abroad for 13 years and moved back as I felt like I should spend some more time with my parents before they got elderly. But my father is one of those types which doesn't like doctors and medicines and has been difficult to get information out. It wasn't until I went to the hospital (Cardiff) with him that anyone really knew what was going on. Then the PSA was 92, which a quick google showed was almost like saying there was a 92% chance he had cancer. So we were both prepared to hear the 'C' word today.

I'm just slightly taken aback that after 14 years of regular PSA checks and occasional scans and biopsies that it sounded so bad... We only had 10 mins with the doctor, not much was explained at all. Just that 9/10 Gleason level, which is pretty scary when you think 10 is the worst!

I suspect he had some infection on the 92 PSA but he was unaware of it.

He had a scan which showed a legion a long time ago, before they could target it for biopsy. So this was the first targeted biopsy. Prehaps that's how the saw the 'suspect' lymph nodes? No other symptoms I believe, no water retention. He's very good for 77, still plays cricket and works as a car mechanic 6 days a week.

Medication... he's been on finasteride and tamsulosin. He takes it now but when he first got the equipment to self catheter he wasn't consistent with taking it... Like I said, he's hard work with this sort of thing and can put up with a lot of discomfort. Which worries me that he might stop taking HT if there are bad side effects...

Thank you so much, I wish I'd been on this forum before today so I could have asked more questions. We really didn't get much information. You've helped me feel less lost. I'm quite stoical myself, I'm sure I'll pull myself together soon and help him get through this as best I can. Thanks again.

David

User
Posted 06 Feb 2019 at 01:03

Ah, is he still on finasteride? Does the fall from 92 to 60 coincide with when he started taking it?

They had seen a lesion in his prostate, not a legion. The lesion is probably where they targeted the biopsy cores. It just means a suspect area ... infection can look like a lesion on a scan.

 

Your comment about the PSA of 92 being like a 92% chance of cancer is not correct. We have had men on here with PSA nearly that high who were given the all clear, and men who had PSA of 3.6 with extensive mets. The PSA cannot be depended upon to indicate how serious the situation is; it simply indicates that further investigations are warranted. Obviously when it gets up into the hundreds it is more indicative - the highest we have had on here was 13,000 and the highest number my husband's urologist has ever seen was 160,000.

 

 

Edited by member 06 Feb 2019 at 01:12  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Feb 2019 at 14:31
Thanks, for some reason I always though it was spelt in a french sort of way, haha. Lesion, I got that now.

He says that he was taking tamsulosin at the time before, after and during the rise to 92 PSA. It's been a while since he's been of finasteride. Only other change at that point was when I moved back in my family home and put both my mother and father on a plant based diet. But I'm not sure what caused the drop.

(My father has always been rather thin, but my mother had got a little overweight with high blood pressure and begins of type 2, but after 6 months plant-based she had to come off all medication as her blood pressure was too low. Now she's meds free. I was quite happy with that result).

I'm feeling much better today, just felt like a bit of a gut punch yesterday. Thanks for your support.

David

User
Posted 06 Feb 2019 at 14:34
Another thing that someone with NHS experience may help with. They said the doctors and the team would meet on the 19th to work out a treatment plan. But they need the bone scan and another scan results to do that. It's only 13 days and we don't have any appointments arranged for scans, is that normal, or should I chase them up?
User
Posted 06 Feb 2019 at 15:35

Originally Posted by: Online Community Member
It's only 13 days and we don't have any appointments arranged for scans, is that normal, or should I chase them up?

Yes, you need to be proactive in these situations with the NHS - speak to the consultant’s secretary about your concerns and enquire as to who actually books the scan appointments.

Cheers, John.

User
Posted 06 Feb 2019 at 17:18
It is good news that dad isn't currently on finasteride ... It actually cuts the PSA in half so gives a falsely low picture of the situation. What I mean is that if dad was currently on finasteride then his PSA would really be 120 not 60, but some GPs smdont seem to know that.

Tamsulosin does not affect PSA. Phew!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Feb 2019 at 19:54
Helpingmydad,

I'm nearly 12 years on from a Gleason 9 high PSA diagnosis, so don't despair. I have lots more years in me yet at 75. That your Dad still manages cricket and car maintenance is fantastic. The fitter he is, the better he'll withstand further treatment. Keep us informed of developments. Everyone one on here is keen to help based on what weve been through or have helped others through. You are amongst friends.

Chin up.

AC

User
Posted 08 Feb 2019 at 14:01

Update, thanks for the advice about being proactive... We hadn't heard anything about the bone scan, so I've been leaving messages last 2 days. Got a call back now and there was no bone scan planned, and the appointment for the treatment plan on the 19th seemed to be fictional, the specialist isn't even there that day.

Now I have a bone scanned booked for next friday and they will give the results on the 19th with a registrar, and take it from there.

So without my calling maybe we'd have been waiting a lot longer.

Thanks for the positive messages, really really helped. Ready to help him face this now.

David

 

Edited by member 08 Feb 2019 at 16:15  | Reason: Not specified

User
Posted 17 Feb 2019 at 16:41

Hello,

My dad had the bone scan on friday, and we'll be going in for results and next information on tuesday. 

Since we didn't know what questions to ask when we got the diagnosis, I intend to be better prepared this time. 

It'd be much appreciated if anyone could help with the important questions we should ask, both in the event that the bone scan is good news or bad news?

Thanks!

David

 
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