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Surgery or Radiotherapy - what to do?

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User
Posted 18 Feb 2015 at 21:10

 

In January I was diagnosed with locallyadvanced prostate cancer -Gleason 9, PSA 30, lymph nodes in the pelvic area and also moving up the paraarotic chain. Only good news is cancer has not spread to the bones.  My case was discussed at a Multi Disciplinary Meeting (MDW) and the recommendation was HT and possible RT.  In parallel I have also been in discussion with a surgeon who recommends removal of the prostate, continue with HT and possible RT later.  As I am new to this I am eager to hear from people that have gone down these different routes?  I have the Oncologist saying if it was me I would avoid surgery and the surgeon advising the operation could extend my life expectancy.  Help? 

User
Posted 18 Feb 2015 at 22:20

Hi Jim

My heart goes out to you, firstly because of the shock of being diagnosed with PCa and secondly because you have one consultant saying one thing and another something else (something I am familiar with)!

I have no idea which would be the best treatment for you and it maybe that both could well be successful. What I would say is that with Gleason 9 I wouldn’t leave it too long before choosing either treatment and getting booked in. From what you say the cancer hasn’t been detected to far from the gland and treatment is much easier, and likely to be more successful, if it remains that case.

Take good care of you and let us know how you get on.

dl

User
Posted 18 Feb 2015 at 23:47

Hello Jim,

Sorry to read that you are here and of the problems that you have faced so far.

The experts you speak with about treatment will probably propose that their field of expertise will offer you the best chance of recovery. Otherwise why would they choose to specialise in that area of treatment?

Look at al the options, consider all the possible side effects, and how long you might have to endure them, that is IF they ocurred?

Then choose wisely and go for it.

atb

dave

User
Posted 19 Feb 2015 at 01:59

Hi Jim

I can only agree with what the other guys have told you, get all the information on all the treatment options available to you and make your choice based on what you think you could best cope with. It does get confusing when the surgeon tells you one thing and the radiologist people tell you something else, they will both claim their treatments are the best. I likened it to buying a new car.  I opted for Brachytherapy which I had 3 weeks ago because I thought I could cope better with the side effects more than surgery. Everyone is different though and there are plenty on here that opted for surgery and do not regret it. 

Take care and keep us updated, Oh and good luck

Alan

User
Posted 19 Feb 2015 at 15:02

Hello Jim , I was also diagnosed with a Gleason 9 , PSA 27 T3b back in 2013 , my Oncologist said surgery was not a option ,

So i went down the HT RT route , if you click on my name you can read my full profile .

User
Posted 19 Feb 2015 at 16:47

Hi Jim,

 

Have to say that surgery on prostate with visible mets in the lymphs ( and active ) would be unusual from an NHS multi-disciplinary team I

think.

Do we take it that the surgeon was a private consultation and you would pay for the surgery ?

 

 

User
Posted 19 Feb 2015 at 17:27

Hi Jim,

You might be interested in this link which suggests that HT and Radiotherapy combined can have a better outcome than HT alone.  Might want to discuss it with your oncologist.

 

http://www.cancernetwork.com/prostate-cancer/trial-confirms-rt-survival-benefit-adt-prostate-cancer

flexi

User
Posted 19 Feb 2015 at 19:06
Originally Posted by: Online Community Member

Hi Jim,

 

Have to say that surgery on prostate with visible mets in the lymphs ( and active ) would be unusual from an NHS multi-disciplinary team I

think.

Do we take it that the surgeon was a private consultation and you would pay for the surgery ?

 

 

And was the surgeon a urologist?

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

User
Posted 19 Feb 2015 at 19:31

I opted for surgery with G7, and the cancer contained. With a G9, I am not so sure about surgery. I would be asking lots of questions - as others have suggested surgery in your case may not help your cause.

Paul

Stay Calm And Carry On.
User
Posted 19 Feb 2015 at 19:58

Jim Mc said "....In parallel I have also been in discussion with a surgeon who recommends removal of the prostate, continue with HT and possible RT later"

With G9, high PSA and possible lymph node involvement I think I'd be in favour of the above. Hit it hard.

Bri

User
Posted 20 Feb 2015 at 01:28

By having both surgery and RT I would think that you have the best but not certain chance of eradicating your cancer. However, you have to bear in mind that the potential side effects of surgery can be quite severe, particularly in respect of short to long term incontinence and erectile dysfunction. RT can add to these side effects in other ways. (Suggest you research these). The surgeon who headed the MDT in my case said he would be prepared to operate if I wished but doubted he could remove all the cancer so recommended I have RT instead. This produced good results for up to 3 years with minimal side effects and I was very happy. However, with HT followed by RT only, a new tumour has now been identified in my prostate. I am now looking to have salvage treatment of another kind. I could possibly find a surgeon to remove my prostate - though many will not due to the greater difficulty of damage caused by RT. Also, I am told that surgery now would involve an 80% chance of incontinence. So my personal view is that if you are going to have surgery, have this done first. With the benefit of hindsight I would have had surgery followed by RT (no prostate for tumours to regrow in this way). However, if salvage HIFU or Cryotherapy eradicates my new tumour I might be glad I didn't have surgery after all! Unfortunately, outcomes are uncertain which doesn't help in making a choice. Even another professional opinion may not call it correctly so ultimately is depends on how an individual views it.

Barry
User
Posted 21 Feb 2015 at 13:12

Hi Jim,

 

It would have been helpful to confirm that the surgeon was a private consultation , and as Lyn asked - a specialist in P.Ca. ?

 

Against some opinions no doubt, I wonder if you are approaching this in the right way.

We have talked here about removal of primary tumour being helpful in slowing progression and also you may have read that some of us have had/propose salvage surgery or other treatments for recurrence in the prostate. Citing removal of primary tumour slowing progression.

All this further treatment has been / is based on clear scans other  than activity in the prostate.

 

Have you actually had a PET/CT Choline scan to check further the lymph involvement ?

To treat aggressively as you are considering may be  wise. But to undergo treatments which will barely slow things down ( and might even cause further problems ) is less to your advantage.

E.G. will surgery in your case cause further aggression elsewhere or less ? Answer probably unknown to date.

 

If you wish to go all-out for treatments then it might be better to treat systemically first. This involves HT of course and the newer drugs such as Abiraterone or Enzalutamide early on would be potentially good if you could get them.

The B.Ca. approach ( which is based on more research & longer time of trying treatments generally ), in your case with lymph involvement could well be HT + chemo to treat systemically & hit the cancer hard WHEREVER it is . Microscopic cells unseen by scan included.Then, dependent upon good scan results a second phase of R/T and or surgery considered.

Surgical removal of affected lymphs is one option with follow-up R/T. Or, Brachytherapy ( perhaps HDR ) to the prostate with EBRT which seems very successful as an alternative to surgery. Or, full prostatectomy with some lymph removal.

 

One good report from the U.S involved a case of Chemo + HT + R/T run together. Another was surgical removal of lymphs, including some behind the abdomen which couldn't be treated with R/T combined with HT and Brachytherapy + EBRT to the prostate & nearby lymphs.

Unfortunately, as mentioned , we don't know the full extent of your problem and I'd suggest you need all the information possible before you dive in.

I hope this helps a bit more.

User
Posted 22 Feb 2015 at 01:10

It is difficult to draw conclusions from comparisons with experiences of individuals. There are many types of PCa (twenty seven comes to mind but I am not certain of the precise number identified so far without checking) and these can behave differently, some being more aggressive and some being more radio resistant so consultants are increasingly trying to fit treatment to a patient taking many factors into account. With so many variables and different preferences favoured by consultants, it is not surprising that consultants may wish to adopt different treatment plans and that is with the benefit of a lot more information and expertise than we have. This is increasingly the case where the disease is more advanced and some men respond better to some treatment than others and it is more a matter of trying to restrain the cancer than cure it.

Barry
User
Posted 22 Feb 2015 at 01:31

I think you are right Man with PC but I can also imagine that a surgeon not experienced in prostate matters could make what are intended to be helpful comments over a pint in the pub and have no idea of the impact that might have across the nation. We don't know at this point whether the surgeon mentioned above is a friend, helpful neighbour, local do-gooder or formal second opinion.

Now that the forum (and all our discussions) are googleable, I am becoming more and more aware of the impact our comments might be having on the silent readers who don't automatically know the subtleties of the disease, what to take seriously and what to discard.

Not really related to this thread (sorry Jim) but I am also conscious that we are all using real names much more freely than we ever did before and perhaps forget that we may be identifiable to the casual surfers that we never had to worry about in the past. Perhaps we should all make a concerted effort to go back to our usernames :-(

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

User
Posted 23 Feb 2015 at 23:02

Originally Posted by: Online Community Member

Apologies for the delayed reply but I had a few days away to distract me from events.  It seems to me as a layman that both the Urological Surgeon and the Oncologist are giving me their best advice using their own chosen field of expertise.  It also seems that both are right to try and attack the primary cause, one by removal of the prostate and the other with radiotherapy in the same area; i.e. prostate and local lymph nodes.

My thanks to you all for advice and now seems I have to research a little more and make a decision.

I am though still interested to hear from anyone who has had any treatment of lymph nodes that have extended outside the pelvic area (in my case the para-aortic chain) either by surgery or radiotherapy?

Like you Jim Mc I like to research such things, in my case thoroughly! I spent about 4 months making my decision on how I wanted my PCa treated. However I am Gleason 7 (4+3) and PSA 11.8. With "Gleason 9, PSA 30, lymph nodes in the pelvic area and also moving up the paraarotic chain" I would have just got on with anything that is likely to work.

Don't leave it too long Jim before you get treatment.

dl

 

User
Posted 24 Feb 2015 at 00:08

My father in law had the lymph nodes removed but declined the prostatectomy or any radiotherapy or hormones. The surgery was similar to RP in some ways - 5 days in hospital, catheter, drain - plus the side effect of lymphodoema but that didn't appear until later on. He lived for 4 years and died suddenly with a PSA of 1.2 which obviously disguised the rapid progression of the disease.

My husband had open RP with lymph node removal and also the bottom of his bladder which was then remodelled. The nodes were removed because they looked suspect but all were clear when checked at the lab. PCa came back two years later and he had RT/HT at that point. Dad had RP with pelvic lymph node removal some years ago but it was routine then rather than because there was any spread.

Edited by member 24 Feb 2015 at 00:20  | Reason: Not specified

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

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User
Posted 18 Feb 2015 at 22:20

Hi Jim

My heart goes out to you, firstly because of the shock of being diagnosed with PCa and secondly because you have one consultant saying one thing and another something else (something I am familiar with)!

I have no idea which would be the best treatment for you and it maybe that both could well be successful. What I would say is that with Gleason 9 I wouldn’t leave it too long before choosing either treatment and getting booked in. From what you say the cancer hasn’t been detected to far from the gland and treatment is much easier, and likely to be more successful, if it remains that case.

Take good care of you and let us know how you get on.

dl

User
Posted 18 Feb 2015 at 23:47

Hello Jim,

Sorry to read that you are here and of the problems that you have faced so far.

The experts you speak with about treatment will probably propose that their field of expertise will offer you the best chance of recovery. Otherwise why would they choose to specialise in that area of treatment?

Look at al the options, consider all the possible side effects, and how long you might have to endure them, that is IF they ocurred?

Then choose wisely and go for it.

atb

dave

User
Posted 19 Feb 2015 at 01:59

Hi Jim

I can only agree with what the other guys have told you, get all the information on all the treatment options available to you and make your choice based on what you think you could best cope with. It does get confusing when the surgeon tells you one thing and the radiologist people tell you something else, they will both claim their treatments are the best. I likened it to buying a new car.  I opted for Brachytherapy which I had 3 weeks ago because I thought I could cope better with the side effects more than surgery. Everyone is different though and there are plenty on here that opted for surgery and do not regret it. 

Take care and keep us updated, Oh and good luck

Alan

User
Posted 19 Feb 2015 at 15:02

Hello Jim , I was also diagnosed with a Gleason 9 , PSA 27 T3b back in 2013 , my Oncologist said surgery was not a option ,

So i went down the HT RT route , if you click on my name you can read my full profile .

User
Posted 19 Feb 2015 at 16:47

Hi Jim,

 

Have to say that surgery on prostate with visible mets in the lymphs ( and active ) would be unusual from an NHS multi-disciplinary team I

think.

Do we take it that the surgeon was a private consultation and you would pay for the surgery ?

 

 

User
Posted 19 Feb 2015 at 17:27

Hi Jim,

You might be interested in this link which suggests that HT and Radiotherapy combined can have a better outcome than HT alone.  Might want to discuss it with your oncologist.

 

http://www.cancernetwork.com/prostate-cancer/trial-confirms-rt-survival-benefit-adt-prostate-cancer

flexi

User
Posted 19 Feb 2015 at 19:06
Originally Posted by: Online Community Member

Hi Jim,

 

Have to say that surgery on prostate with visible mets in the lymphs ( and active ) would be unusual from an NHS multi-disciplinary team I

think.

Do we take it that the surgeon was a private consultation and you would pay for the surgery ?

 

 

And was the surgeon a urologist?

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

User
Posted 19 Feb 2015 at 19:31

I opted for surgery with G7, and the cancer contained. With a G9, I am not so sure about surgery. I would be asking lots of questions - as others have suggested surgery in your case may not help your cause.

Paul

Stay Calm And Carry On.
User
Posted 19 Feb 2015 at 19:52

My thanks to all the people that have responded.  Not an easy decision but I believe that being offered radiotherapy or surgery in addition to HT in my case is an added bonus whichever I choose.  Both offer to address the prostate primary cancer and lymph nodes in the pelvic area which has got to be a good thing.  It does not address the lymph nodes outside the pelvic area which I understand can only be treated with hormones?  Has anyone had any radiotherapy to lymph nodes outside the pelvic area?

 

User
Posted 19 Feb 2015 at 19:58

Jim Mc said "....In parallel I have also been in discussion with a surgeon who recommends removal of the prostate, continue with HT and possible RT later"

With G9, high PSA and possible lymph node involvement I think I'd be in favour of the above. Hit it hard.

Bri

User
Posted 20 Feb 2015 at 01:28

By having both surgery and RT I would think that you have the best but not certain chance of eradicating your cancer. However, you have to bear in mind that the potential side effects of surgery can be quite severe, particularly in respect of short to long term incontinence and erectile dysfunction. RT can add to these side effects in other ways. (Suggest you research these). The surgeon who headed the MDT in my case said he would be prepared to operate if I wished but doubted he could remove all the cancer so recommended I have RT instead. This produced good results for up to 3 years with minimal side effects and I was very happy. However, with HT followed by RT only, a new tumour has now been identified in my prostate. I am now looking to have salvage treatment of another kind. I could possibly find a surgeon to remove my prostate - though many will not due to the greater difficulty of damage caused by RT. Also, I am told that surgery now would involve an 80% chance of incontinence. So my personal view is that if you are going to have surgery, have this done first. With the benefit of hindsight I would have had surgery followed by RT (no prostate for tumours to regrow in this way). However, if salvage HIFU or Cryotherapy eradicates my new tumour I might be glad I didn't have surgery after all! Unfortunately, outcomes are uncertain which doesn't help in making a choice. Even another professional opinion may not call it correctly so ultimately is depends on how an individual views it.

Barry
User
Posted 21 Feb 2015 at 13:12

Hi Jim,

 

It would have been helpful to confirm that the surgeon was a private consultation , and as Lyn asked - a specialist in P.Ca. ?

 

Against some opinions no doubt, I wonder if you are approaching this in the right way.

We have talked here about removal of primary tumour being helpful in slowing progression and also you may have read that some of us have had/propose salvage surgery or other treatments for recurrence in the prostate. Citing removal of primary tumour slowing progression.

All this further treatment has been / is based on clear scans other  than activity in the prostate.

 

Have you actually had a PET/CT Choline scan to check further the lymph involvement ?

To treat aggressively as you are considering may be  wise. But to undergo treatments which will barely slow things down ( and might even cause further problems ) is less to your advantage.

E.G. will surgery in your case cause further aggression elsewhere or less ? Answer probably unknown to date.

 

If you wish to go all-out for treatments then it might be better to treat systemically first. This involves HT of course and the newer drugs such as Abiraterone or Enzalutamide early on would be potentially good if you could get them.

The B.Ca. approach ( which is based on more research & longer time of trying treatments generally ), in your case with lymph involvement could well be HT + chemo to treat systemically & hit the cancer hard WHEREVER it is . Microscopic cells unseen by scan included.Then, dependent upon good scan results a second phase of R/T and or surgery considered.

Surgical removal of affected lymphs is one option with follow-up R/T. Or, Brachytherapy ( perhaps HDR ) to the prostate with EBRT which seems very successful as an alternative to surgery. Or, full prostatectomy with some lymph removal.

 

One good report from the U.S involved a case of Chemo + HT + R/T run together. Another was surgical removal of lymphs, including some behind the abdomen which couldn't be treated with R/T combined with HT and Brachytherapy + EBRT to the prostate & nearby lymphs.

Unfortunately, as mentioned , we don't know the full extent of your problem and I'd suggest you need all the information possible before you dive in.

I hope this helps a bit more.

User
Posted 22 Feb 2015 at 01:10

It is difficult to draw conclusions from comparisons with experiences of individuals. There are many types of PCa (twenty seven comes to mind but I am not certain of the precise number identified so far without checking) and these can behave differently, some being more aggressive and some being more radio resistant so consultants are increasingly trying to fit treatment to a patient taking many factors into account. With so many variables and different preferences favoured by consultants, it is not surprising that consultants may wish to adopt different treatment plans and that is with the benefit of a lot more information and expertise than we have. This is increasingly the case where the disease is more advanced and some men respond better to some treatment than others and it is more a matter of trying to restrain the cancer than cure it.

Barry
User
Posted 22 Feb 2015 at 01:31

I think you are right Man with PC but I can also imagine that a surgeon not experienced in prostate matters could make what are intended to be helpful comments over a pint in the pub and have no idea of the impact that might have across the nation. We don't know at this point whether the surgeon mentioned above is a friend, helpful neighbour, local do-gooder or formal second opinion.

Now that the forum (and all our discussions) are googleable, I am becoming more and more aware of the impact our comments might be having on the silent readers who don't automatically know the subtleties of the disease, what to take seriously and what to discard.

Not really related to this thread (sorry Jim) but I am also conscious that we are all using real names much more freely than we ever did before and perhaps forget that we may be identifiable to the casual surfers that we never had to worry about in the past. Perhaps we should all make a concerted effort to go back to our usernames :-(

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

User
Posted 23 Feb 2015 at 20:16

Apologies for the delayed reply but I had a few days away to distract me from events.  It seems to me as a layman that both the Urological Surgeon and the Oncologist are giving me their best advice using their own chosen field of expertise.  It also seems that both are right to try and attack the primary cause, one by removal of the prostate and the other with radiotherapy in the same area; i.e. prostate and local lymph nodes.

My thanks to you all for advice and now seems I have to research a little more and make a decision.

I am though still interested to hear from anyone who has had any treatment of lymph nodes that have extended outside the pelvic area (in my case the para-aortic chain) either by surgery or radiotherapy?

User
Posted 23 Feb 2015 at 23:02

Originally Posted by: Online Community Member

Apologies for the delayed reply but I had a few days away to distract me from events.  It seems to me as a layman that both the Urological Surgeon and the Oncologist are giving me their best advice using their own chosen field of expertise.  It also seems that both are right to try and attack the primary cause, one by removal of the prostate and the other with radiotherapy in the same area; i.e. prostate and local lymph nodes.

My thanks to you all for advice and now seems I have to research a little more and make a decision.

I am though still interested to hear from anyone who has had any treatment of lymph nodes that have extended outside the pelvic area (in my case the para-aortic chain) either by surgery or radiotherapy?

Like you Jim Mc I like to research such things, in my case thoroughly! I spent about 4 months making my decision on how I wanted my PCa treated. However I am Gleason 7 (4+3) and PSA 11.8. With "Gleason 9, PSA 30, lymph nodes in the pelvic area and also moving up the paraarotic chain" I would have just got on with anything that is likely to work.

Don't leave it too long Jim before you get treatment.

dl

 

User
Posted 24 Feb 2015 at 00:08

My father in law had the lymph nodes removed but declined the prostatectomy or any radiotherapy or hormones. The surgery was similar to RP in some ways - 5 days in hospital, catheter, drain - plus the side effect of lymphodoema but that didn't appear until later on. He lived for 4 years and died suddenly with a PSA of 1.2 which obviously disguised the rapid progression of the disease.

My husband had open RP with lymph node removal and also the bottom of his bladder which was then remodelled. The nodes were removed because they looked suspect but all were clear when checked at the lab. PCa came back two years later and he had RT/HT at that point. Dad had RP with pelvic lymph node removal some years ago but it was routine then rather than because there was any spread.

Edited by member 24 Feb 2015 at 00:20  | Reason: Not specified

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

 
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