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Choice of treatment for locally advanced prostate ca.

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User
Posted 23 Oct 2019 at 20:07

At my first oncologist appointment I was given info about EBRT, hormone therapy and chemotherapy, and started on hormone therapy.

At that stage I’d only had a PSA test and an MRI which showed an apparently localised cancer within the prostate. At my second appointment I was told that a PET scan showed involvement of one local lymph node. 

When I asked about surgery as an option the oncologist simply insisted I should have EBRT. Is this experience usual? I had the impression that the treatment had been decided even before the full diagnosis was known and no discussion of options was encouraged.

 

 

User
Posted 24 Oct 2019 at 02:15
No that is not usual - it is exceptionally unusual to embark on radical treatment without a biopsy. The only time that happens really is when the PSA test and MRI show strong indicators of extensive spread, but it seems that you are not in that category? Have you been given a nurse specialist? Could you phone him / her to ask a) why you didn't have a biopsy b) why you have been recommended to have chemo?

If the local lymph node was not one that could be captured as part of the prostatectomy, they probably felt surgery was not in your best interest but they should have explained that to you :-(

If you don't have an allocated nurse, go to your GP and ask for a copy of the diagnosis / treatment plan letters from the consultant to the GP - you are entitled to copies of these so do not be put off / dissuaded.

How old are you? And are you being treated in Wales?

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

User
Posted 24 Oct 2019 at 14:34
With a T3b N1 M0 you didn't have many treatment options to discuss as surgery would have been unlikely to eradicate the cancer. It is great that you are being offered early chemo - this is a very recent development in terms of PCa treatment protocols and has been shown to make the HT / RT combo more effective for many men.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Oct 2019 at 21:11
The fact that you did have a biopsy and given the results the proposed way of treating you with (EBRT) and Chemo early on is more in line with the latest thinking. Everybody concerned with PCa is on a learning curve and where the benefits learnt through trials and innovations become widely adopted this leads to better results. So good luck with your treatment.

Although it's great living in Devon as I do and largely for family reasons, when it comes to treatments for PCa it has meant me travelling to London for further treatment, scans and template biopsy, plus some consultations, others being arranged over the telephone. I must say that looking back I didn't give sufficient weight to how living in a place remote from top cancer hospitals and with poor transport links might affect me. While we all hope that initial treatment will eradicate our cancer, it can potentially involve further down the line treatments and tests. I would recommend anybody with PCa considers what is available when contemplating moving far away from major hospitals usually found in bigger towns.

Barry
User
Posted 25 Oct 2019 at 08:27

Hi Gwrtheyrn,

                      I have exactly the same diagnosis as yourself. I'm on prostrap3 and finished my 6th and final chemo last Thursday and awaiting EBRT consultant appointment. I have been quite happy with my treatment so far, very little side effects with any of it but I know this is very individual. (I am youngish and quite fit TBF). I wasn't offered RP at all but it was explained in detail why so I was happy with the outcome. My infected node is an anal node and they thought bowel cancer too! luckily bowel specialist looked at PET scan and said nope its prostate spread.

              

 

User
Posted 26 Oct 2019 at 20:57

Hi Gwrtheyrn,

I’m also T3B N1 M0   Although my staging was confirmed after surgery.  It’s been explained to me that there is a place for surgery in treating advanced prostate cancer, but with the caveat that it’s very much less likely to be a mono therapy with curative intent, and that additional therapy will be needed.  Naturally most men would not want to go through surgery with anything less than a cure in mind.

While you’re on the NHS you’d need find a surgeon who’s willing to operate on someone who’s locally advanced, not all will   Private provision may be different I guess.

 

 

 

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User
Posted 24 Oct 2019 at 02:15
No that is not usual - it is exceptionally unusual to embark on radical treatment without a biopsy. The only time that happens really is when the PSA test and MRI show strong indicators of extensive spread, but it seems that you are not in that category? Have you been given a nurse specialist? Could you phone him / her to ask a) why you didn't have a biopsy b) why you have been recommended to have chemo?

If the local lymph node was not one that could be captured as part of the prostatectomy, they probably felt surgery was not in your best interest but they should have explained that to you :-(

If you don't have an allocated nurse, go to your GP and ask for a copy of the diagnosis / treatment plan letters from the consultant to the GP - you are entitled to copies of these so do not be put off / dissuaded.

How old are you? And are you being treated in Wales?

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

User
Posted 24 Oct 2019 at 14:25

Thanks - sorry I should have said I’d also had a biopsy.

My cancer stage by now after a PET scan is T3b N1 M0 with Gleason score of 4+3 (revised from 4+5 for some reason).

My main worry isn’t so much the cancer as the lack of opportunity to discuss treatment options. I did try to raise it only to be told I’ll die if I don’t have treatment! Perhaps the oncologist was having a bad day. They seem to have a hefty list to see.

 

 

 

 

User
Posted 24 Oct 2019 at 14:32

Yes, my first referral was to a urologist; MRI then showed localised carcinoma (or possibly granuloma, but was the former) with no evidence of spread on DRE.

 

 

User
Posted 24 Oct 2019 at 14:34
With a T3b N1 M0 you didn't have many treatment options to discuss as surgery would have been unlikely to eradicate the cancer. It is great that you are being offered early chemo - this is a very recent development in terms of PCa treatment protocols and has been shown to make the HT / RT combo more effective for many men.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Oct 2019 at 14:42

Thanks for this Lyn. 

I will try to get the oncologist to explain at the next appointment. (I wasn’t ‘offered’ chemo as much as being given a leaflet about it).

I’m not in Wales but funnily enough we had been considering moving to Wales- though will probably hang around here in S England until the p.ca matter is resolved.

I imagine that getting to treatment centres in north Wales might be somewhat laborious, especially for daily EBRT.

 

User
Posted 24 Oct 2019 at 19:49
Indeed
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Oct 2019 at 21:11
The fact that you did have a biopsy and given the results the proposed way of treating you with (EBRT) and Chemo early on is more in line with the latest thinking. Everybody concerned with PCa is on a learning curve and where the benefits learnt through trials and innovations become widely adopted this leads to better results. So good luck with your treatment.

Although it's great living in Devon as I do and largely for family reasons, when it comes to treatments for PCa it has meant me travelling to London for further treatment, scans and template biopsy, plus some consultations, others being arranged over the telephone. I must say that looking back I didn't give sufficient weight to how living in a place remote from top cancer hospitals and with poor transport links might affect me. While we all hope that initial treatment will eradicate our cancer, it can potentially involve further down the line treatments and tests. I would recommend anybody with PCa considers what is available when contemplating moving far away from major hospitals usually found in bigger towns.

Barry
User
Posted 25 Oct 2019 at 08:27

Hi Gwrtheyrn,

                      I have exactly the same diagnosis as yourself. I'm on prostrap3 and finished my 6th and final chemo last Thursday and awaiting EBRT consultant appointment. I have been quite happy with my treatment so far, very little side effects with any of it but I know this is very individual. (I am youngish and quite fit TBF). I wasn't offered RP at all but it was explained in detail why so I was happy with the outcome. My infected node is an anal node and they thought bowel cancer too! luckily bowel specialist looked at PET scan and said nope its prostate spread.

              

 

User
Posted 25 Oct 2019 at 11:16

Thanks for that Stalwart9.

I think what unnerved me more than anything was the lack of a detailed explanation regarding surgery vs EBRT. I was put in the latter camp before there was any evidence of local spread.

This is in contrast to what I expected having looked at the various leaflets, all of which talk about ‘choosing the treatment that’s right for you’ etc.

User
Posted 26 Oct 2019 at 20:57

Hi Gwrtheyrn,

I’m also T3B N1 M0   Although my staging was confirmed after surgery.  It’s been explained to me that there is a place for surgery in treating advanced prostate cancer, but with the caveat that it’s very much less likely to be a mono therapy with curative intent, and that additional therapy will be needed.  Naturally most men would not want to go through surgery with anything less than a cure in mind.

While you’re on the NHS you’d need find a surgeon who’s willing to operate on someone who’s locally advanced, not all will   Private provision may be different I guess.

 

 

 

 
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