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New diagnose T3c confused over which treatment to choose

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User
Posted 12 Nov 2016 at 13:54

Hi,


I'm 62 white male, just diagnosed with Psa 9.5, Gleason 3+4=7 (30% of patter 4), T3c NO MO SVI, 10 out of 10 cores involved, perineural invasion in 7, extraprostatic extension in 2.


Firstly I was offered HT (6months) then RT, + HT (3years) which I believe is the usual treatment offered. When I asked about the possibility of surgery I was also offered RP, + HT (3months was mentioned) + RT.


I am confused about which path to choose. I'm worried about incontinence, bowel, and ED issues which will obviously increase with more treatments. QOL and recurrence are other important factors in the matrix of risk. I would appreciate advice

User
Posted 21 Nov 2016 at 22:14
Update - spoke to my nurse today. Told her I needed persuading about a prostatectomy as so may people felt I had gone too far. She told me the MDT felt this was the best option because of my age. She said they fully expected to have to do a second treatment in about six months. She also said the literature was correct but that my treatment pathway is individualised and mainly due to my age.

She also said she would call me if she gets my PET/CT results before my next appointment.

In the end, I think I'll do what they tell me and hope to goodness they got it right.

Walter
User
Posted 14 Nov 2016 at 14:57

It is really hard for us to answer your questions because we are not medical people and we don't have the advantage of your scans etc in front of us. But if you were my brother or father, I would say:

- if the surgeon is only giving a 50% chance of surgery sorting it out I would be asking him what he thinks the advantage is?

- research says that all other things being equal it make no difference whether you have surgery or HT/RT - the chance of remission at 10 years, the chance of still being alive at 10 years, etc is identical

- however, if there is already some chance of positive margins or SVI (which it seems you do have) then RT/HT is probably predicted to have a much better than 50% chance of getting it all

- if it is known that there is already some local spread, some men would still choose to have the prostate removed in an attempt to get rid of the main bulk of the problem. That does then mean that they have 2 sets of side effects to live with - one set that is bad to start with but hopefully gets better while the other starts reasonably okay and may get worse a few years down the line

- there is more research now to say that the longer you are on HT the better the chance of full remission - but i think that was based on men having RT/HT as their primary treatment. I am not sure if there is any data for men having RT/HT as adjuvant treatment

It seems that you would benefit from asking the specialists just a few more questions - or perhaps your nurse specialist if you have been allocated one?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Nov 2016 at 15:51

OMG moke! What a choice. I'm sorry but I can't help. I think Lyn's analysis above is superb, it should help you to ask those extra questions in order to arrive at the best choice for you. There is one extra question I would add. I asked my Onco this question at my last consultation. It is:

If I were your husband, which of these treatments would you want me to opt for?

There are times when I'm almost glad I was diagnosed with Advance PCa. PCa will kill me (unless something else gets me first). Treatments can prolong my life span but at varying costs to my QOL. It's a simple binary choice.

Good luck. I wish you well.

David

User
Posted 14 Nov 2016 at 16:44

To clarify risks: I read it you're aware the more treatments the higher the risk of side effects. In which case just RT/HT offers the potential of less side effects namely ED - Hot flushes -Fatigue but unlikely to include incontinence which surgery would for sometime and possibly long term.

Ray

Edited by member 14 Nov 2016 at 17:02  | Reason: Not specified

User
Posted 19 Nov 2016 at 15:29

Statistically, having RP with adjuvant RT/HT is much more successful than RP with a delay and then salvage RT/HT once the PSA starts to rise - they just published the results of a big European research project into this.

And while they are proposing non nerve-sparing which means you are very unlikely to ever have natural erections again, that doesn't mean that injections, pump or pellets wouldn't work. The side effects of 3 treatments can be horrible but there is no guarantee that you would experience all of them - John gave up the HT after a few months because he couldn't bear it but as for side effects of RP and RT, he is absolutely fine. In fact, there haven't been any SEs from the RT and we are 3 years down the line now so would have expected some to start showing themselves.

Our local hospital is one of the ones trialling adjuvant RT/HT for all men who have RP and they are convinced it produces better chances of full remission.

I don't think there is any data published on RP/RT/HT over RT/HT yet. But in your case, if the consultant is only giving odds of 50% for both radical treatments, it seems you have much to gain from the 'all 3' combo!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Nov 2016 at 19:51

Hi Moke I have had RP non nerve sparring and adjuvant RT but no HT my psa is still undetectable as it was pre op, I feel fit and well fully continent ,but do have ED but have the pump and just recently some movement down below all the best on your choice Andy

User
Posted 20 Nov 2016 at 11:28

If you go back to his first post, it seems the MDT recommendation was RT/HT and surgery was only added as an option because he asked about it.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Nov 2016 at 23:31

A wise approach

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Nov 2016 at 23:23

Interesting but aimed at MDT rather than an individual so rather a lot to digest and I don't know how helpful this would be for most men in trying to come to a treatment decision (given options) as in title to this thread. Different studies, using different periods of time and criteria make decision making more difficult and it is 'unfortunate' that particularly going back some years, researchers havent/don't agree on a more standardised study method. I believe what men would like to have is a more concise report updated every year or two showing how men with, early, localised and advanced PCa have fared under various treatment and ongoing possibilities. Of course it is not possible to determine from this where an individual will be within the the statical tolerance but would give a clearer indication of the 'odds' and 'risks' of various treatments. The best advice a patient is likely to get as an individual is through his consultant and MDT. Quite apart from the effectiveness of treatments in combating PCa, it is also important to continue to evaluate and report on how treatment advances impact on side effects, which is also an important consideration for patients.

Barry
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User
Posted 12 Nov 2016 at 21:36

Hi moke

It reads you know the risks. So perhaps it comes down to you deciding which is the most valuable to you survival time or QOL and follow that path.

Have you asked about Chemo plus HT as a first treatment or other trials?

Ray

User
Posted 13 Nov 2016 at 00:31

Did they say the surgery might get it all or were they just offering to debulk the tumour? It is not common to be offered surgery with extension already into the seminal vesicles & elsewhere so I suppose it depends what they have said the benefit would be. My OH had surgery not realising that there was spread so when he had to have the RT/HT as well he wished he had avoided the side effects of the surgery.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Nov 2016 at 14:41

Thank you for your replies they are very comforting. To be truthful, the reporting has been a bit hit and miss, as I first saw a nurse who recommended robotic surgery then the next week a doctor who gave me incomplete information about HT + RT (it wasn't his area he said). Though when I did see the doctors directly involved they have answered all my questions fully. Its just that I didn't know all the questions I needed to ask at that point.


Debulking was not mentioned though the surgeon did say that surgery had less than a 50% chance of being the only treatment and I only found out that he had recommended Open RP + HT (3months) + RT (in a letter to my doctor, not me) through another phone call to a nurse requesting a further appointment. He did say the SVI spread was in the centre of the SV and he comes with a good rep at a big teaching hospital - Cardiff.


It might read like I know the risks but this is just info I've picked up on here. From what I understand the treatment to go for is the one that has the biggest chance of success first time, and that is something I'd like advice on.


Is there any point risking complications from surgery if the following HT + RT will just magnify the side effects.


What are the chances that the longer HT (6months) then RT, + HT (3years) will actually cure / control?


I'm worried about which of these 2 treatment paths (1. HT (6months) then RT, + HT (3years) OR 2. RP, + HT (3months was mentioned) + RT.) has the worst potential side effects and recurrence pattern?


I haven't asked about Chemo plus HT as a first treatment or other trials, because that has never been mentioned.


I'm seeing the RT tomorrow and the surgeon next week for a final time before i make up my mind and I'm trying to find out what questions I should be asking them?


Thanks again

User
Posted 14 Nov 2016 at 14:47

Thanks for your comment. If I think QOL is more important, which treatment path would you recommend?

User
Posted 14 Nov 2016 at 14:57

It is really hard for us to answer your questions because we are not medical people and we don't have the advantage of your scans etc in front of us. But if you were my brother or father, I would say:

- if the surgeon is only giving a 50% chance of surgery sorting it out I would be asking him what he thinks the advantage is?

- research says that all other things being equal it make no difference whether you have surgery or HT/RT - the chance of remission at 10 years, the chance of still being alive at 10 years, etc is identical

- however, if there is already some chance of positive margins or SVI (which it seems you do have) then RT/HT is probably predicted to have a much better than 50% chance of getting it all

- if it is known that there is already some local spread, some men would still choose to have the prostate removed in an attempt to get rid of the main bulk of the problem. That does then mean that they have 2 sets of side effects to live with - one set that is bad to start with but hopefully gets better while the other starts reasonably okay and may get worse a few years down the line

- there is more research now to say that the longer you are on HT the better the chance of full remission - but i think that was based on men having RT/HT as their primary treatment. I am not sure if there is any data for men having RT/HT as adjuvant treatment

It seems that you would benefit from asking the specialists just a few more questions - or perhaps your nurse specialist if you have been allocated one?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Nov 2016 at 15:51

OMG moke! What a choice. I'm sorry but I can't help. I think Lyn's analysis above is superb, it should help you to ask those extra questions in order to arrive at the best choice for you. There is one extra question I would add. I asked my Onco this question at my last consultation. It is:

If I were your husband, which of these treatments would you want me to opt for?

There are times when I'm almost glad I was diagnosed with Advance PCa. PCa will kill me (unless something else gets me first). Treatments can prolong my life span but at varying costs to my QOL. It's a simple binary choice.

Good luck. I wish you well.

David

User
Posted 14 Nov 2016 at 16:44

To clarify risks: I read it you're aware the more treatments the higher the risk of side effects. In which case just RT/HT offers the potential of less side effects namely ED - Hot flushes -Fatigue but unlikely to include incontinence which surgery would for sometime and possibly long term.

Ray

Edited by member 14 Nov 2016 at 17:02  | Reason: Not specified

User
Posted 19 Nov 2016 at 14:35

I saw the radiotherapist consultant this week and asked him all the questions suggested.


He seemed to suggest that both treatments - (surgery or radiotherapy + HT) had similar odds (around 50%) of being curative, and that the benefit of surgery first was that if it failed, I would have a second chance at a curative procedure through the possibility of salvage RT after surgery. Whereas the reverse is not possible. This is on the surface persuasive,  but I don't know enough about the reality of having both treatments to understand if this course of action does actually make those odds any better.


On further discussions he stated that the salvage therapy would be exactly the same as the normal course (6mthsHT + RT + 3years) so that seemed to suggest to me that he thought recurrence highly likely and that taking two chances to cure was preferable to one. I can understand that medical people see the odds from their statistical point of view, whereas QOL and the side-effects might be more of a concern to patients.


Surgery would be NNS so I presume impotence would be complete. He quoted incontinence chances at around 3% (which I presume is full permanent incontinence) which seemed on the low side - though I don't know what that statistic is hiding. As LynEyre said this gives .... 2 sets of side effects to live with - one set that is bad to start with but hopefully gets better while the other starts reasonably okay and may get worse a few years down the line.


I'm still conflicted. If incontinence can be gotten over relatively quickly, then it appears I am accepting impotence (and other SE?) for a second chance of a curative treatment (albeit wit the same odds). Because after that all measures are just aiming to control. Is this the case? Am I reading this right? Or are the SE from 2 complete treatments liable to stack up exponentially, and really reduce my QOL?


I'm seeing the surgeon for the last time on Tuesday before I make my decision, any advice or further questions I should ask, would be welcomed.


Thanks.

User
Posted 19 Nov 2016 at 14:53

I forget to ask, is Salvage treatment of HT(6months) + RT + HT(3 years),  any more likely to be successful after surgery, than it is as the primary treatment?

User
Posted 19 Nov 2016 at 15:29

Statistically, having RP with adjuvant RT/HT is much more successful than RP with a delay and then salvage RT/HT once the PSA starts to rise - they just published the results of a big European research project into this.

And while they are proposing non nerve-sparing which means you are very unlikely to ever have natural erections again, that doesn't mean that injections, pump or pellets wouldn't work. The side effects of 3 treatments can be horrible but there is no guarantee that you would experience all of them - John gave up the HT after a few months because he couldn't bear it but as for side effects of RP and RT, he is absolutely fine. In fact, there haven't been any SEs from the RT and we are 3 years down the line now so would have expected some to start showing themselves.

Our local hospital is one of the ones trialling adjuvant RT/HT for all men who have RP and they are convinced it produces better chances of full remission.

I don't think there is any data published on RP/RT/HT over RT/HT yet. But in your case, if the consultant is only giving odds of 50% for both radical treatments, it seems you have much to gain from the 'all 3' combo!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Nov 2016 at 19:51

Hi Moke I have had RP non nerve sparring and adjuvant RT but no HT my psa is still undetectable as it was pre op, I feel fit and well fully continent ,but do have ED but have the pump and just recently some movement down below all the best on your choice Andy

User
Posted 20 Nov 2016 at 11:28

If you go back to his first post, it seems the MDT recommendation was RT/HT and surgery was only added as an option because he asked about it.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Nov 2016 at 22:47
Hi moke

I was recently diagnosed T3aN1MX with Gleason 7.

My urologist is fairly determined to do a prostatectomy. Everyone is telling me this is highly unusual. When I questioned him, he said that if only one or two lymph nodes are involved, surgery would still be of benefit. He is a very respected urologist and so I tend to want to trust him. But part of me wonders why surgery when even the Macmillan prostate cancer booklet says it is extremely unusual for locally advanced prostate cancer. I think his view is it leaves other options still open down the line.

I had a PET/CT scan on Friday, so maybe that will provide clarity.

I also have a session with an oncologist coming up.

I so wish I wasn't in this club!

Walter
User
Posted 21 Nov 2016 at 22:14
Update - spoke to my nurse today. Told her I needed persuading about a prostatectomy as so may people felt I had gone too far. She told me the MDT felt this was the best option because of my age. She said they fully expected to have to do a second treatment in about six months. She also said the literature was correct but that my treatment pathway is individualised and mainly due to my age.

She also said she would call me if she gets my PET/CT results before my next appointment.

In the end, I think I'll do what they tell me and hope to goodness they got it right.

Walter
User
Posted 21 Nov 2016 at 23:31

A wise approach

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Nov 2016 at 11:09

I'd like to thank everyone who contributed. I am also choosing the surgical approach after seeing both consultants who seemed to suggest that though RT was less impactful it was less likely to produce long-term cure. For those who need all the details of treatment (I am one), I finally found all the information I needed online in an booklet called Multi-disciplinary (MDT) Guidance for Managing Prostate Cancer (2013) which sets out all the options in a medical but clear manner. I found lots of PC websites just far too vague. Also J. Donovan's paper on side effects 'Patient Reported Outcomes' Sept 2016 New England Journal of Medicine is straightforward about the implications. It may be all a bit of a gamble but I feel like I can trust the professionals and thanks to them, who pointed me towards research when asked, and people on this site, I go forward feeling I've made the best decision I can, in knowledge, rather than blind faith.


Good luck.


 

User
Posted 28 Nov 2016 at 15:45

Moke


 


I'll be reading those papers but I've already made up my mind to go for the surgery.  They say they are still aiming for a cure, so I don't feel like I have much choice.  But I don't feel pressurised into it either.


The strangest thing is that I don't feel in any way unwell.  That will most likely not be the case next week once I've had surgery!


 


Walter 

User
Posted 28 Nov 2016 at 23:23

Interesting but aimed at MDT rather than an individual so rather a lot to digest and I don't know how helpful this would be for most men in trying to come to a treatment decision (given options) as in title to this thread. Different studies, using different periods of time and criteria make decision making more difficult and it is 'unfortunate' that particularly going back some years, researchers havent/don't agree on a more standardised study method. I believe what men would like to have is a more concise report updated every year or two showing how men with, early, localised and advanced PCa have fared under various treatment and ongoing possibilities. Of course it is not possible to determine from this where an individual will be within the the statical tolerance but would give a clearer indication of the 'odds' and 'risks' of various treatments. The best advice a patient is likely to get as an individual is through his consultant and MDT. Quite apart from the effectiveness of treatments in combating PCa, it is also important to continue to evaluate and report on how treatment advances impact on side effects, which is also an important consideration for patients.

Barry
 
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