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Confused by diagnosis

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User
Posted 25 Mar 2024 at 12:19

The trend is ever upward, as mine was, and if I was you I would come off AS and decide on a treatment plan.  I was on AS for around 6 months and although my  Gleason score remained the same (3+4=7) after my prostate was removed and sliced and diced my staging was increased from T2 to T3a (Because the cancer was bulging out of the prostate).

 

Ivan

User
Posted 25 Mar 2024 at 15:25

Why wait another three months after three consecutive rises? It seems on an upward trajectory. 

Do you have one lesion, away from the edge? 

 

User
Posted 25 Mar 2024 at 15:42

 

Two tumours mate, one each side, 10mm and 11mm long,  but contained within the capsule.

User
Posted 25 Mar 2024 at 16:07

Originally Posted by: Online Community Member

I think I'm resigned to the fact that I'm heading towards coming off AS and getting this thing dealt with, and I'm starting to think the sooner the better. Apparently it's not the actual number they are concerned about, but the continued rise/rate of rise.

Can't disagree with that. You've had a good run on AS.

Potential side effects of radical treatment aren't appealing, but I don't need to remind you of that, and you know where it's going anyway. 

Good luck. 

Kev.

User
Posted 25 Mar 2024 at 16:15

Originally Posted by: Online Community Member
My consultant apparently thinks we should get one more test in 3 months, then if it is still rising I will be given another MRI and then possibly biopsy for re-staging.

I have asked for at least a telephone consultation with her to discuss these results, but am not sure if this is going to happen, as they are "very busy...!" 

Very poor response. I'm sure everyone is very busy but that's no excuse for not keeping you properly updated.

Sorry to see you've had another PSA rise mate. At least, ensure you get the MRI follow up.

 

Edited by member 25 Mar 2024 at 21:22  | Reason: Typo

User
Posted 25 Mar 2024 at 17:02
Hoping you get a response soon, no matter how busy they may be at least a phone call will help to discuss your concerns. Hopefully that could lead to an MRI which could reassure you whether AS can be continued or it’s time to have a re think. Good luck.
User
Posted 27 Mar 2024 at 20:46

Very fed up. Despite promise of a call back yesterday I have still not heard from Consultant. I stuck my numbers into the Nomogram (?) online, and my doubling time is now 21 months. According to any info I can find, I should be coming off AS now and starting treatment. Despite my diagnosis being downgraded to 3+3=6, I have bilateral disease, Crib in one core, PNI in a second, and now a 52% increase in PSA level in 11 months, from 5.2 to 7.9. I have a strong gut feeling that all is not rosy. 
Does anybody with more knowledge than me (not difficult) think I’m over reacting based on the facts above? Any advice welcomed.

Ian.

User
Posted 27 Mar 2024 at 20:52

They won't show any urgency with a doubling time of 21 months - a doubling time of 6 months is more worrying and a DT of 6 weeks requires clinical review!

I have got confused - the call you are waiting for from the urologist - is that a telephone appointment? If not, can you call the urologist's secretary and say you want an appointment to discuss? It isn't urgent and the uro's view to test again in 3 months seems sensible but yes, it seems like AS is no longer the right choice for you as you don't feel confident in the way it is being managed.

Edited by member 27 Mar 2024 at 20:54  | Reason: Not specified

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

User
Posted 27 Mar 2024 at 21:14

Thanks Lyn

it wasn’t a prearranged appt, I got a call from the nurse on Monday who said the Urologist would call me back on Tuesday to discuss my concerns.

I think my main problem dealing with AS stems from being told originally that I couldn’t go on it. This was due to my Gleason score being 7, and the fact that in her words “there’s quite a lot of cancer in there” both sides, 11 cores positive. When the second pathologist downgraded my score and recommended AS, I took it to delay the obvious side effects of treatment, but I can’t help constantly wondering which lab got it right. I suppose the rising PSA is steering my brain towards believing the first one.

Thanks for your reply - your input is appreciated as you are one of the best sources of info/advice in this group 👍

User
Posted 27 Mar 2024 at 22:11

Originally Posted by: Online Community Member

It isn't urgent and the uro's view to test again in 3 months seems sensible but yes, it seems like AS is no longer the right choice for you as you don't feel confident in the way it is being managed.

Personally I would try and expediate the follow up MRI.  Am I correct in saying that NICE current AS guidelines recommend MRI follow ups between 12 and 18 months. Although Ian's only been on AS for 6 months, his PSA has been monitored for a year. I'd have thought that the 3 consecutive PSA rises, would add weight to the request for an early scan? Then take if from there.

Edited by member 27 Mar 2024 at 22:23  | Reason: Additional text

User
Posted 27 Mar 2024 at 22:50

Originally Posted by: Online Community Member
I think my main problem dealing with AS stems from being told originally that I couldn’t go on it. This was due to my Gleason score being 7, and the fact that in her words “there’s quite a lot of cancer in there” both sides, 11 cores positive. When the second pathologist downgraded my score and recommended AS, I took it to delay the obvious side effects of treatment, but I can’t help constantly wondering which lab got it right. I suppose the rising PSA is steering my brain towards believing the first one.

In some ways, it doesn't matter which lab is right. For AS to be a good option, the info needs to suggest everything is stable and you have to feel confident that the AS is actually active and you are being surveilled! Neither of these seems to be case for you- lots of errors and confused dates and changes of heart / approach; no wonder you are losing faith. The cribriform would also worry me. As I said in the previous post, I don't think it is so urgent that you need to panic but, looking at your previous post your next appointment is in May and perhaps that is the right time to just say "nope, I want treatment please." I am not sure what help a new MRI and biopsy would be to you except if you were considering staying on AS which I don't think you are? 

My father-in-law died because his AS wasn't done properly so while I think it is the right of any man with low scores to choose AS and avoid / postpone treatment if he can, I am probably hyper-suspicious of hospitals that don't seem to do it properly. 

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

User
Posted 27 Mar 2024 at 23:24

Originally Posted by: Online Community Member
My father-in-law died because his AS wasn't done properly

But I bet you could never prove it?

User
Posted 29 Mar 2024 at 12:16
There was no need to prove it; it was obvious and very shocking for everyone including the urologist. Fortunately, AS guidelines have been changed since then but I wouldn't like anyone else to go through the same.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Mar 2024 at 15:48

Originally Posted by: Online Community Member
There was no need to prove it; it was obvious and very shocking for everyone including the urologist. Fortunately, AS guidelines have been changed since then but I wouldn't like anyone else to go through the same.

Hi Lyn,

Did you complain? Did anyone admit negligence? Was anyone held responsible? What happened to them? 

I'm still fighting my case? I obviously didn't die, but could have easily been left incurable.

 

 

Edited by member 29 Mar 2024 at 17:14  | Reason: Typo.

User
Posted 03 Apr 2024 at 15:36

So I finally spoke to the consultant today. Whilst stopping short of saying the second opinion was wrong, she admitted there was a perfectly good chance that this was the case and that we had been misled. She also informed me that my original diagnosis of 3+4=7 from Peterborough, was given after my biopsy results were reviewed by two separate Pathologists. The SMDT decided to go with the version from the other Pathologist and downgraded my score to 6!

She fully expects my PSA level to rise again by my next test in June, at which point she will get me another MRI scan done, another biopsy for re-staging, then we can talk RARP. I questioned the 3 month wait but she said to trust her, and that it would be better to have another test result to base her advice on. I have to trust her knowledge and experience here, so didn't question her further.

Very frustrating, but it looks like I should have just cracked on with treatment back in September.

User
Posted 03 Apr 2024 at 16:44

Thanks for the update Ian.

Hindsight is a wonderful thing. IF you end up having to have radical treatment you could argue that you could have done it a few months earlier BUT on the otherhand, by taking the choice you did, those 'lost months' have all been free from likely radical treatment side effects. Enjoy your further 3 months side effect free, time. Who knows, you may still not need radical treatment after that.

All the best pal.

Edited by member 03 Apr 2024 at 16:45  | Reason: Typo

User
Posted 03 Apr 2024 at 20:15

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
There was no need to prove it; it was obvious and very shocking for everyone including the urologist. Fortunately, AS guidelines have been changed since then but I wouldn't like anyone else to go through the same.

Hi Lyn,

Did you complain? Did anyone admit negligence? Was anyone held responsible? What happened to them? 

I'm still fighting my case? I obviously didn't die, but could have easily been left incurable.

 

No, we had no interest in doing any of that - we just needed to understand how it happened and what the hospital would do differently in future. 

The info is on my profile but in short, Stan was on AS and his PSA dropped mysteriously - from 23 to 21 and then into single figures. We asked for new scans but these were refused - AS guidelines were that a new scan would be done if the PSA rose, not fell. We asked whether other meds (specifically, his heart meds) could cause an inexplicable drop in PSA but they said not and not to worry about it. I think in the end the PSA dropped to 2 or something like that. When he was admitted to hospital via A&E for severe oedema, a scan showed that the cancer had spread to his liver and kidneys; he died a couple of days later. It just wasn't realised that in rare cases, prostate cancer can stop producing PSA as it gets more aggressive. If we had got the scans when we asked for them, he could have started HT but the AS guidelines don't cover PSA falling - just rising.  

Edited by member 03 Apr 2024 at 20:19  | Reason: Not specified

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

User
Posted 03 Apr 2024 at 21:05

Originally Posted by: Online Community Member
The info is on my profile but in short,

Thank you, I should have checked there first.

 
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