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4+3 T3bN1M0 diagnosis facing tricky treatment choice

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User
Posted 18 Jul 2023 at 10:41

Hi - I have a treatment decision to make and I am currently unclear about the way forward. Any help would be very welcome.

I have a recent diagnosis. I am 58 and my locally advanced prostate is Gleason 4+3 T3bN1M0. I have started ADT and I am pencilled in for RT (PSA score allowing) probably in the new year. 

I have been asked to consider two further options. One, the addition of 6 rounds of chemo (Docetaxel) prior to RT. Or, two, taking part in a trial with a 50% chance of accessing Abiraterone as an additional treatment.

It appears to me that the evidence for Docetaxel at this point suggests relatively modest benefit. While Abiraterone at this early stage is showing significant promise, even for M0 patients like myself.

A difficult decision. 

To opt for addition of Docetaxel now, appears marginal in benefit (some increase in time to possible recurrence) but at cost of potential adverse events/side effects and quality of life. 

To opt for the trial, clearly runs the risk of limiting my treatment to potential ADT + RT + placebo, when the treatment trend is clearly towards adopting a more proactive stance at these early stages.

How have others navigated this decision? Is there key data that might sway me one way or another? What are the key questions I could ask that might bring clarity when I return to see my clinical and medial oncologists next week?

Thanks for your help.

User
Posted 18 Jul 2023 at 18:30
I was locally advanced, slight spread to seminal vesicles only, PSA21, gleason 8 (upped to 9 after TURP). My treatment was Zoladex & RT (37 sessions)to prostate & pelvis. Zoladex plan was for 3 yrs and treatment started beginning Nov 2015. I was also on trial that added 2yrs of abiraterone and enzalutimide with prednisolone, as I think alluded to earlier.

Currently my PSA is 0.5 which is my nadir and get checked annually so the HT with added abiraterone/enzalutimide certainly has worked for me up to now. However, as always, who knows if the actual addition of abiraterone/enzalutimide made the difference and Zoladex wouldnt have worked on its own, with the RT, obviously.I

Should add that RT/HT was the only treatment I was offered.

Peter

User
Posted 18 Jul 2023 at 16:23
I thought the latest best practice was Chemo, Abi/enza/Dara, HT AND whole pelvis RT. There are a few guys on here from several years ago that had that regime as part of a trial and they are still undetectable.

User
Posted 18 Jul 2023 at 18:04
Hi Steve,

I am under treatment for fourteen years. As you may know there is no cure for metastatic prostate cancer only management to keep you going. Please refer to my profile for any details or contact me and I am happy to help. I am in the middle of chemo at present, this is the third time I am having chemo. Things have moved on since I started treatment. So my experience may be out of date.

Cheers

Pissu

User
Posted 18 Jul 2023 at 22:12

Originally Posted by: Online Community Member
What are the key questions I could ask that might bring clarity when I return to see my clinical and medial oncologists next week?

Have you been given specific advice on the location of the N1 mets?

Jules

edit: Maybe I need to lay out the implications of my question ... If your mets are limited to lymph glands near the prostate, it might be possible [depending on what's available in your area] to have them treated by a LINAC machine, with targeted RT at the same time as your prostate is irradiated and  preferably at the same does level as is used on the prostate. Much as it annoys me, this is classed as treatment "with curative intent", the point being that treatment of this sort gives you a good chance of seeing your cancer off for a lifetime, though this can never be guaranteed of course, hence the "intent".

I had 3 lymph nodes treated this way in Australia [along with my prostate, G9, psa 11, 3 lymph nodes] and while I realize the treatment isn't used everywhere, I bring it up because others on this forum, in the UK, have mentioned it as a possibility. Personally, this seems like a better option than chemo and more likely to have a better outcome.

Jules

Edited by member 19 Jul 2023 at 00:41  | Reason: Not specified

User
Posted 18 Jul 2023 at 23:30

Originally Posted by: Online Community Member
I thought the latest best practice was Chemo, Abi/enza/Dara, HT AND whole pelvis RT. There are a few guys on here from several years ago that had that regime as part of a trial and they are still undetectable.

I think that is for advanced PCa, not men who are locally advanced with curable intent?

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

User
Posted 18 Jul 2023 at 23:41

Originally Posted by: Online Community Member

As you may know there is no cure for metastatic prostate cancer only management to keep you going. 

Pissu

N1 isn't considered to be metastatic though. 

Steve, you are on a standard route for a T3 N1 diagnosis which appears to be with curable intent. Only you can decide whether the additional side effects and risks are worth a better chance of remission. If you go down the Abi trial route, getting the placebo isn't such a big deal because, if you did become incurable at some point in the future, either abi or one of the newer drugs ( enzalutimide, apalutimide or darolutimide, fir example would be available at the point when you need it. What surprises me is that you haven't mentioned brachytherapy boost - has that been discussed and ruled out? 

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

User
Posted 19 Jul 2023 at 14:09

Originally Posted by: Online Community Member
What surprises me is that you haven't mentioned brachytherapy boost - has that been discussed and ruled out?

Brachytherapy boost can't be used with N1, as the areas outside the prostate and seminal vesicles don't get full radiotherapy dose, but full dose is required if there's known cancer there.

Edited by member 19 Jul 2023 at 14:10  | Reason: Not specified

User
Posted 19 Jul 2023 at 14:22

The standard of care with N1M0 disease is up-front chemo if the patient is well enough for it.
During COVID, there was an alternative of swapping the chemo for extra hormone therapy using Enzalutamide or Abiraterone. I'm not sure how extensively that's still offered, but I think it is in many places. Given the very significant reduction in price of Abiraterone I would hope it was, but I haven't seen any of the prescribing guidelines updated to reflect that it's now much cheaper.

I wouldn't suggest a trial with neither of these - that would appear to be below the current standard of care. Actually, I'm wondering if you might have got what's being offered wrong, as I really doubt they'd allow this.

You are obviously a high risk patient, so you might want to ask them to include all the pelvic lymph nodes in the radiotherapy. These could also have be micro-metastasis (mets too small to show on scans). I was offered and took this option, although I was T3aN0M0. The dose to the nodes without known cancer was done at a reduced rate (although ask if you want to know what they suggest for you).

Edited by member 19 Jul 2023 at 14:44  | Reason: Not specified

User
Posted 19 Jul 2023 at 16:10

Thanks Andy,

You are absolutely right - and on further questioning it turns out the trial is to potentially access Darolutamide rather than Abiraterone.

Interesting to hear about swapping chemo for Aviraterone but my understanding is that it isn’t available on the NHS for my category of PC.

I will ask about the radiotherapy plan.

Thanks again

Show Most Thanked Posts
User
Posted 18 Jul 2023 at 16:23
I thought the latest best practice was Chemo, Abi/enza/Dara, HT AND whole pelvis RT. There are a few guys on here from several years ago that had that regime as part of a trial and they are still undetectable.

User
Posted 18 Jul 2023 at 18:04
Hi Steve,

I am under treatment for fourteen years. As you may know there is no cure for metastatic prostate cancer only management to keep you going. Please refer to my profile for any details or contact me and I am happy to help. I am in the middle of chemo at present, this is the third time I am having chemo. Things have moved on since I started treatment. So my experience may be out of date.

Cheers

Pissu

User
Posted 18 Jul 2023 at 18:30
I was locally advanced, slight spread to seminal vesicles only, PSA21, gleason 8 (upped to 9 after TURP). My treatment was Zoladex & RT (37 sessions)to prostate & pelvis. Zoladex plan was for 3 yrs and treatment started beginning Nov 2015. I was also on trial that added 2yrs of abiraterone and enzalutimide with prednisolone, as I think alluded to earlier.

Currently my PSA is 0.5 which is my nadir and get checked annually so the HT with added abiraterone/enzalutimide certainly has worked for me up to now. However, as always, who knows if the actual addition of abiraterone/enzalutimide made the difference and Zoladex wouldnt have worked on its own, with the RT, obviously.I

Should add that RT/HT was the only treatment I was offered.

Peter

User
Posted 18 Jul 2023 at 22:12

Originally Posted by: Online Community Member
What are the key questions I could ask that might bring clarity when I return to see my clinical and medial oncologists next week?

Have you been given specific advice on the location of the N1 mets?

Jules

edit: Maybe I need to lay out the implications of my question ... If your mets are limited to lymph glands near the prostate, it might be possible [depending on what's available in your area] to have them treated by a LINAC machine, with targeted RT at the same time as your prostate is irradiated and  preferably at the same does level as is used on the prostate. Much as it annoys me, this is classed as treatment "with curative intent", the point being that treatment of this sort gives you a good chance of seeing your cancer off for a lifetime, though this can never be guaranteed of course, hence the "intent".

I had 3 lymph nodes treated this way in Australia [along with my prostate, G9, psa 11, 3 lymph nodes] and while I realize the treatment isn't used everywhere, I bring it up because others on this forum, in the UK, have mentioned it as a possibility. Personally, this seems like a better option than chemo and more likely to have a better outcome.

Jules

Edited by member 19 Jul 2023 at 00:41  | Reason: Not specified

User
Posted 18 Jul 2023 at 23:30

Originally Posted by: Online Community Member
I thought the latest best practice was Chemo, Abi/enza/Dara, HT AND whole pelvis RT. There are a few guys on here from several years ago that had that regime as part of a trial and they are still undetectable.

I think that is for advanced PCa, not men who are locally advanced with curable intent?

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

User
Posted 18 Jul 2023 at 23:41

Originally Posted by: Online Community Member

As you may know there is no cure for metastatic prostate cancer only management to keep you going. 

Pissu

N1 isn't considered to be metastatic though. 

Steve, you are on a standard route for a T3 N1 diagnosis which appears to be with curable intent. Only you can decide whether the additional side effects and risks are worth a better chance of remission. If you go down the Abi trial route, getting the placebo isn't such a big deal because, if you did become incurable at some point in the future, either abi or one of the newer drugs ( enzalutimide, apalutimide or darolutimide, fir example would be available at the point when you need it. What surprises me is that you haven't mentioned brachytherapy boost - has that been discussed and ruled out? 

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

User
Posted 19 Jul 2023 at 14:09

Originally Posted by: Online Community Member
What surprises me is that you haven't mentioned brachytherapy boost - has that been discussed and ruled out?

Brachytherapy boost can't be used with N1, as the areas outside the prostate and seminal vesicles don't get full radiotherapy dose, but full dose is required if there's known cancer there.

Edited by member 19 Jul 2023 at 14:10  | Reason: Not specified

User
Posted 19 Jul 2023 at 14:22

The standard of care with N1M0 disease is up-front chemo if the patient is well enough for it.
During COVID, there was an alternative of swapping the chemo for extra hormone therapy using Enzalutamide or Abiraterone. I'm not sure how extensively that's still offered, but I think it is in many places. Given the very significant reduction in price of Abiraterone I would hope it was, but I haven't seen any of the prescribing guidelines updated to reflect that it's now much cheaper.

I wouldn't suggest a trial with neither of these - that would appear to be below the current standard of care. Actually, I'm wondering if you might have got what's being offered wrong, as I really doubt they'd allow this.

You are obviously a high risk patient, so you might want to ask them to include all the pelvic lymph nodes in the radiotherapy. These could also have be micro-metastasis (mets too small to show on scans). I was offered and took this option, although I was T3aN0M0. The dose to the nodes without known cancer was done at a reduced rate (although ask if you want to know what they suggest for you).

Edited by member 19 Jul 2023 at 14:44  | Reason: Not specified

User
Posted 19 Jul 2023 at 16:01

Thank you, Jules

Information on the N1 mets is as follows: The PSMA PT scan showed PSMA avid but sub centimetre, mesorectal lymph nodes, left obturator lymph node, left pelvic sidewall lymph node and right external iliac lymph node.

Good to hear your experience... much appreciated

User
Posted 19 Jul 2023 at 16:06

Thanks Lyn, very helpful. In fact, I had the trial option wrong and I am being offered access to Darolutamide on the trial not Abiraterone. But I take your point about being able to access these treatments later if needs be. Love the Kierkegaard quote.

User
Posted 19 Jul 2023 at 16:10

Thanks Andy,

You are absolutely right - and on further questioning it turns out the trial is to potentially access Darolutamide rather than Abiraterone.

Interesting to hear about swapping chemo for Aviraterone but my understanding is that it isn’t available on the NHS for my category of PC.

I will ask about the radiotherapy plan.

Thanks again

User
Posted 20 Jul 2023 at 00:51

A darolutimide trial - I would snap their hand off!

Edited by member 20 Jul 2023 at 00:53  | Reason: Not specified

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

User
Posted 20 Jul 2023 at 21:01

Hi

I was diagnosed in Dec 2014 Psa 199 T3bN0M1.

I was offered place on enzalutamide trial (plus abitaterone which I dropped after 6 months) plus HT.

The trial ended and the enzalutamide stopped 6 months ago. Now I just take HT

My psa this month is .02 and has remained below .08 throughout the trial.

The support I received through the trial was excellent with frequent monitoring. It really helped me get through the early years.

Yes there are side effects I used to run half marathons now its tough walking up hills.   I am much more tired. I used to ride a Harley but now its too heavy.

I would say go for the trial.   I think enzalutamide is in the same family which I think are a form of kemo by tablet (I am sure Lynne can clarify that)

Edited by member 20 Jul 2023 at 21:08  | Reason: wrong descn

User
Posted 21 Jul 2023 at 09:05

Thanks - I think I am reaching the same conclusion, but it would be helpful to hear your reasoning .... It also looks like I could do the chemo as well, but I am less sure of that addition

User
Posted 21 Jul 2023 at 16:14

I had 2 hot pelvic lymph nodes identified by PSMA scan after RP.   My regime is 3 years ADT, chemo, full pelvic RT, apalutamide.  I’ve finished the chemo and the RT so now on ADT plus Apalutamide.  After 3 years will see if it was all worth it.  I continued working (from home) through most of the treatment.  The chemo is manageable but drags on towards the end.

My onco said not every scenario is covered by a trial but they are learning that the earlier you hit this cancer the better.  Also age and general health is a factor for an early chemo recommendation.   In my first meeting I asked my onco to hit it as hard as possible so if it were me I would go for chemo + darolutamide if that is on offer and recommended by your medical team.  But it is very much a personal decision.

 

Edited by member 21 Jul 2023 at 16:15  | Reason: Not specified

 
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