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Newly Diagnosed - Prostatectomy vs HIFU vs Surveillance

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User
Posted 14 Jun 2024 at 16:16

Hi 

I dont know exactly what medical info to give but i a 61 year old with Gleason 3+4, "some" Gleason 3+3, perineural invasion, currently located within the prostate.

At the time of diagnosis the hospital said i had 2 option prostatectomy or radiotherapy, they advised prostatectomy due to my age but made no mention that it might fail. The more research i did the more i was concerned with the side effects and the options should it fail.

I then discovered that HIFU existed and it sounded like a much better option - less serious side effects and if it doesnt work 1st time then it can be done again. I have subsequently been approved for HIFU treatment at a London hospital.

However, after more research (including in this forum) i am now not so sure. My summary of the options are below

Nerve Sparing Prostatectomy

Short-term side effects which generally improve

20-40% failure rate

"Salvage" option is radiotherapy with associated incontinence, ED & bowel issues

HIFU

Less severe side effects

30%+ failure rate (not 15% as i was originally advised by the doctor)

"Salvage" option is prostatectomy but if you've had HIFU the NHS wont do a nerve sparing operation - so this would mean going private if i wanted to avoid permanent ED

Do Nothing

I put my scores through the Cambridge University  https://prostate.predict.cam/ website and it said that given my metrics i had a 90% chance of survival for 10 years only rising to 92% if i had a prostatectomy - hardly seems to make a difference?

Also, the Oxford study (https://www.ox.ac.uk/news/2023-03-13-study-shows-delaying-treatment-localised-prostate-cancer-does-not-increase-mortality) suggests that  "97% of the men diagnosed with prostate cancer survived 15 years after diagnosis, irrespective of which treatment they received. Around a quarter of the men on active monitoring had still not had any invasive treatment for their cancer after 15 years."

All in all im quite confused and certainly dont feel that the experts 've seen to date have given me the full story. Im hoping that others with experience might be able to help me better understand my current situation and the best way forward. 

At the moment i am holding fire and have been booked in for a surveillance multiparametric MRI scan in a years time and plan to get 6 monthly PSA tests (currently 5.0).

What further questions or info do you think i need to get in order to make a fully informed decision?

Any thoughts gratefully received, Mark 

User
Posted 14 Jun 2024 at 20:16

The Oxford study you refer to is the ProtecT trial. It was only open to men eligible for Active Surveillance, which you haven't been offered (although you've defaulted to it, having not chosen yet), so I would assume your diagnosis was a higher risk than was eligible for this trial, so it's not relevant to you. Also, those who started off on the Active Surveillance arm had twice the incidence of metastatic cancer at 10 years, and you might not want to be on the lifelong drugs for that.

Salvage surgery - it's not an case of nerve sparing not being available on the NHS, they'll do it if they can, but salvage surgery is less likely to be able to be nerve sparing than radical surgery (initial treatment), and may have worse continence outcomes too. Salvage surgery needs to be done by a specialist in it. You probably shouldn't be planning a pathway where you expect to require salvage surgery, because you'll do better to have radical surgery at the outset. (I've heard that refuted by focal therapy proponents, but I remain skeptical.)

In the case of radical surgery (i.e. as a first treatment option), the surgeon should be able to roughly estimate if nerve sparing is possible and how good continence will be, based on where the cancer is inside the prostate, although there are never any guarantees.

Have you spoken with a radiation oncologist yet? What did they say?

Edited by member 14 Jun 2024 at 20:21  | Reason: Not specified

User
Posted 15 Jun 2024 at 07:05

Hi Mark

With Gleason 3 and a bit of 4, PSA 5, it’s low grade stuff. Time is on your side and like you, I’d be taking time out to think about it, whilst monitoring PSA of course.


Originally Posted by: Online Community Member

What further questions or info do you think i need to get in order to make a fully informed decision?

Any thoughts gratefully received, Mark 

As far as Prostatectomy is concerned, I’d be asking the surgeon what the implications of perineural invasion are for nerve sparing and the chances of finding cancer cells at the edge of the prostate (positive margin).

You might also want to explore Brachytherapy.

All the best.

User
Posted 15 Jun 2024 at 08:00

Originally Posted by: Online Community Member
I’d be asking the surgeon what the implications of perineural invasion are for nerve sparing and the chances of finding cancer cells at the edge of the prostate (positive margin).

Perineural invasion (PNI) refers to the cancer tracking along inside nerve sheaths in the prostate. This is not related to the nerve bundles which are spared or not and impact erectile function.

The presence of PNI slightly increases the risk that cancer will have tracked outside the prostate via nerves, and that radiation to the prostate bed might be required some time afterwards. It might be a small factor adding weight to external beam radiotherapy rather than prostatectomy in the first place, but not a very significant one.

User
Posted 15 Jun 2024 at 18:46

Originally Posted by: Online Community Member

Andy, I hope I am not hijacking this thread but I think this may be useful to Mark1963 and others as well as myself. My post op pathology showed T3a (although I was told the capsule had not been breached but almost was) with PNI and clear margins (Neurosafe  procedure in op). My questions are: Would or could, in the normal run of things, PNI be diagnosed pre op and as far as you are aware, would the cancerous cells always creep to the prostate bed or could they go directly elsewhere?

Peter

Yes, PNI can be diagnosed in the biopsy. It depends if any of the samples happened to catch it.

PNI only has a small impact on recurrence, from which you might presume cancerous cells usually don't get all the way out to the prostate bed this way.

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User
Posted 14 Jun 2024 at 19:31

Hi 

Have you been offered HIFU on NHS ?

I researched treatments when my husband was dx with Pca in 2018 and thought HIFU was the best option but he chose surgery and is happy with his choice, he was 70 yrs old and gleason 8  

My husband has changed his diet - he no longer has cows milk  - NHS cite consumption of cows milk as a possible cause of developing prostate cancer - he has soya milk instead -  he  drinks red wine - a couple of glasses before his evening meal , he also has a natural phytoestrogen which blocks testosterone 

This site is very much geared towards radiotherapy and  ADT 

User
Posted 14 Jun 2024 at 20:16

The Oxford study you refer to is the ProtecT trial. It was only open to men eligible for Active Surveillance, which you haven't been offered (although you've defaulted to it, having not chosen yet), so I would assume your diagnosis was a higher risk than was eligible for this trial, so it's not relevant to you. Also, those who started off on the Active Surveillance arm had twice the incidence of metastatic cancer at 10 years, and you might not want to be on the lifelong drugs for that.

Salvage surgery - it's not an case of nerve sparing not being available on the NHS, they'll do it if they can, but salvage surgery is less likely to be able to be nerve sparing than radical surgery (initial treatment), and may have worse continence outcomes too. Salvage surgery needs to be done by a specialist in it. You probably shouldn't be planning a pathway where you expect to require salvage surgery, because you'll do better to have radical surgery at the outset. (I've heard that refuted by focal therapy proponents, but I remain skeptical.)

In the case of radical surgery (i.e. as a first treatment option), the surgeon should be able to roughly estimate if nerve sparing is possible and how good continence will be, based on where the cancer is inside the prostate, although there are never any guarantees.

Have you spoken with a radiation oncologist yet? What did they say?

Edited by member 14 Jun 2024 at 20:21  | Reason: Not specified

User
Posted 15 Jun 2024 at 07:05

Hi Mark

With Gleason 3 and a bit of 4, PSA 5, it’s low grade stuff. Time is on your side and like you, I’d be taking time out to think about it, whilst monitoring PSA of course.


Originally Posted by: Online Community Member

What further questions or info do you think i need to get in order to make a fully informed decision?

Any thoughts gratefully received, Mark 

As far as Prostatectomy is concerned, I’d be asking the surgeon what the implications of perineural invasion are for nerve sparing and the chances of finding cancer cells at the edge of the prostate (positive margin).

You might also want to explore Brachytherapy.

All the best.

User
Posted 15 Jun 2024 at 08:00

Originally Posted by: Online Community Member
I’d be asking the surgeon what the implications of perineural invasion are for nerve sparing and the chances of finding cancer cells at the edge of the prostate (positive margin).

Perineural invasion (PNI) refers to the cancer tracking along inside nerve sheaths in the prostate. This is not related to the nerve bundles which are spared or not and impact erectile function.

The presence of PNI slightly increases the risk that cancer will have tracked outside the prostate via nerves, and that radiation to the prostate bed might be required some time afterwards. It might be a small factor adding weight to external beam radiotherapy rather than prostatectomy in the first place, but not a very significant one.

User
Posted 15 Jun 2024 at 16:25

Andy, I hope I am not hijacking this thread but I think this may be useful to Mark1963 and others as well as myself. My post op pathology showed T3a (although I was told the capsule had not been breached but almost was) with PNI and clear margins (Neurosafe  procedure in op). My questions are: Would or could, in the normal run of things, PNI be diagnosed pre op and as far as you are aware, would the cancerous cells always creep to the prostate bed or could they go directly elsewhere?

Peter

User
Posted 15 Jun 2024 at 16:57
I am currently on AS and have been for 2.5 years, for reference I was Gleason 3-4 but key for me was the low level of Gleason 4. From 21 samples Gleason 4 was only in 0.3mm of 1 of the samples, all the rest were clear. Do you know your numbers in detail for the actual volume of grade 4. This could be important in your decision. My current status following a recent MRI which showed no change, is stay on AS keep monitoring PSA which is also stable at around 4 and move to 2 yearly MRI unless PSA goes above 5.5.

Hope this helps, with your thinking

User
Posted 15 Jun 2024 at 17:30

Thanks Juddy

I had 25 cores

2 cores contain Gleason 3+4, grade group 2. 10% tumour is pattern 4. Longer segment 8mm

3 cores contain Gleason 3+3, grade group 1

Im not sure if that makes things any clearer?

Edited by member 15 Jun 2024 at 17:31  | Reason: Not specified

User
Posted 15 Jun 2024 at 17:46

Originally Posted by: Online Community Member

it's not an case of nerve sparing not being available on the NHS, they'll do it if they can,

Thats interesting, i have read elsewhere in the forum that the NHS wont do nerve sparing surgery if you've had HIFU and that a private op £22k is the only option.

User
Posted 15 Jun 2024 at 18:46

Originally Posted by: Online Community Member

Andy, I hope I am not hijacking this thread but I think this may be useful to Mark1963 and others as well as myself. My post op pathology showed T3a (although I was told the capsule had not been breached but almost was) with PNI and clear margins (Neurosafe  procedure in op). My questions are: Would or could, in the normal run of things, PNI be diagnosed pre op and as far as you are aware, would the cancerous cells always creep to the prostate bed or could they go directly elsewhere?

Peter

Yes, PNI can be diagnosed in the biopsy. It depends if any of the samples happened to catch it.

PNI only has a small impact on recurrence, from which you might presume cancerous cells usually don't get all the way out to the prostate bed this way.

User
Posted 16 Jun 2024 at 15:58

Originally Posted by: Online Community Member

Thanks Juddy

I had 25 cores

2 cores contain Gleason 3+4, grade group 2. 10% tumour is pattern 4. Longer segment 8mm

3 cores contain Gleason 3+3, grade group 1

Im not sure if that makes things any clearer?

 

I would think very carefully then about next steps, you have very low volume of G4, was this visible on the MRI?

Also what type of scanner was used, was it the latest generation 3Tesla machine?

ultimatley you have to be happy with and live with your decision, it is a very personal decision but it seems to me that you have time to consider next steps, AS would seem to be a good option

 

 

 
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