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Staying on active surveillance

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User
Posted 11 Apr 2016 at 17:17

hi all

my OH has decided, with the OK from docs, to postpone his planned RLP for at least 6 months. He just wasn't ready to make that choice. Urologist says he is not suitable for radiotherapy/brachtherapy due to multifocal cancer.

Has anyone on here actually decided to stay on active surveillance altogether for moderate risk localised cancer? If so, how did things go? I know every man and his cancer are different but I was wondering if it's that unusual a choice

Thanks

B

User
Posted 11 Apr 2016 at 17:17

hi all

my OH has decided, with the OK from docs, to postpone his planned RLP for at least 6 months. He just wasn't ready to make that choice. Urologist says he is not suitable for radiotherapy/brachtherapy due to multifocal cancer.

Has anyone on here actually decided to stay on active surveillance altogether for moderate risk localised cancer? If so, how did things go? I know every man and his cancer are different but I was wondering if it's that unusual a choice

Thanks

B

User
Posted 11 Apr 2016 at 19:37

Hi B

We have spoken before. I am interested re. the reason why your urologist thinks that your man is not suitable for radiotherapy/brachytherapy due to multifocal cancer. If the tumour(s) are confined to the prostate then I don't think it matters – radiotherapy or brachytherapy are still suitable. I'll study a bit more and get back to you.

dl



Edited by member 11 Apr 2016 at 19:42  | Reason: Not specified

User
Posted 11 Apr 2016 at 21:08

Hi, BJS.
Good for him!
Yes, the guy who runs the group I go to is having active surveillance for 3+3, which is what I would do if that were my grade.
Even if he had surgery or radiotherapy there would be repeat PSAs, and scans as required, as part of follow up, so there is still a degree of uncertainty after those treatments as there is with AS. PSA is a good marker of how the disease is doing.
All the best,
Henry

User
Posted 11 Apr 2016 at 23:43

Hi BJS, I can only think of a couple of people on here that have remained on AS with a G7 - once it starts to rise, people are more likely to be advised they need to act (as your OH's medical team did)

The most important thing is to ensure the AS is carried out fully in line with the NICE guidance. My father-in-law was supposedly on AS with a G7 but he didn't get regular scans - they were only monitoring his PSA which turned out to be unreliable (Henry, unfortunately PSA is not always a good marker). He died 4 years after diagnosis because it had spread unnoticed. AS has served your OH well so far; which must be reassuring?

Was it just the surgeon that said brachy / RT would not be suitable? Have you seen an oncologist to discuss the possibilities?

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

User
Posted 12 Apr 2016 at 00:58

Hhhhmm, it's really tough for you when it seems radical treatment is needed but the OH is simply not ready for it yet.

The thing is, I don't think you could call it active surveillance anymore if he still doesn't agree to treatment after he has had a little breathing space. AS is used to describe the proactive monitoring of a cancer to ensure it isn't progressing, and - if it does progress - to identify when a tipping point has been reached where intervention is necessary. In your case, it has progressed significantly and the moment of intervention has been reached so having no treatment from this point on isn't really AS, it is 'choosing not to have treatment'. I hope that by the time of his next review he will feel more confident in the new medical team.

How high is his PSA? I couldn't see it anywhere in your postings or profile.

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

User
Posted 12 Apr 2016 at 02:24

Hi BJS,
I certainly would not suggest treatment (at any stage) for somebody else. However, if I was in this position with some of the cancer in new areas and already Gleason 4, I would be concerned that my cancer was becoming more aggressive and widespread and would not wish to miss the opportunity of treating it whilst still contained. My thinking is influenced by the fact that I was diagnosed with a 3+4=7 Gleason but with a T3A staging which meant the cancer was in the process of breaching the capsule, so I was strongly advised not to have surgery. (I subsequently had RT and more recently HIFU). Had I been diagnosed and treated some months earlier, it might have been possible to have removed all the cancer - an 'if only'.

It might be an idea for your husband to obtain assurance that the cancer is still well contained and ask whether another MRI in say 3 months might be useful in determining the urgency for treatment, if he has definitely decided to defer it meanwhile.

Barry
User
Posted 12 Apr 2016 at 13:43

I can certainly see the sense in waiting for the Tesla scan in August before giving the final go ahead for the op, particularly as the person you have seen is one of the leading PCa experts in this country. As the PSA is not rising, it is entirely possible that he was always a 3+4 and it was simply that the previous biopsy didn't spear any of the 4s.

I still don't understand the rationale for RT not being suitable - usually the advice is the other way round and men whose cancer is too developed for curative surgery may still be offered curative RT. Have you actually seen an oncologist or only the two surgeons?

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

User
Posted 12 Apr 2016 at 14:32

we did see an oncologist at the original hospital (which we have now totally lost faith in and left). I was a bit puzzled as to the lack of enthusiasm for RT. Maybe we need to pursue it a bit more. They kept going on about RT making the flow worse - I'd never thought his flow was that bad, although it certainly got better on tamsulosin. He did have all the flow tests when he was originally diagnosed so I suppose they know what they are talking about. All along we have been told that they wanted to keep RT in reserve as you can have RT after surgery but not the other way round
Personally I believe the 4s were probably there all along. The first biopsy couldn't get to that area as it was TRUS. And it could explain why the PSA didn't increase over the past 2 years

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User
Posted 11 Apr 2016 at 19:37

Hi B

We have spoken before. I am interested re. the reason why your urologist thinks that your man is not suitable for radiotherapy/brachytherapy due to multifocal cancer. If the tumour(s) are confined to the prostate then I don't think it matters – radiotherapy or brachytherapy are still suitable. I'll study a bit more and get back to you.

dl



Edited by member 11 Apr 2016 at 19:42  | Reason: Not specified

User
Posted 11 Apr 2016 at 19:47

Thanks dl. That's the only reason we've been given apart from flow issues, which docs said might be made worse with RT/brachytherapy
B

User
Posted 11 Apr 2016 at 21:08

Hi, BJS.
Good for him!
Yes, the guy who runs the group I go to is having active surveillance for 3+3, which is what I would do if that were my grade.
Even if he had surgery or radiotherapy there would be repeat PSAs, and scans as required, as part of follow up, so there is still a degree of uncertainty after those treatments as there is with AS. PSA is a good marker of how the disease is doing.
All the best,
Henry

User
Posted 11 Apr 2016 at 23:00
Thanks Henry. I still think that surgery will happen after the 3T scan but it's giving him a bit more time to decide

Think he would be feeling better if he hadn't been on cipro for this wretched recalcitrant infection. Now he has been vomitting all day and started to bring up bile :-(

How is your recovery going?

User
Posted 11 Apr 2016 at 23:43

Hi BJS, I can only think of a couple of people on here that have remained on AS with a G7 - once it starts to rise, people are more likely to be advised they need to act (as your OH's medical team did)

The most important thing is to ensure the AS is carried out fully in line with the NICE guidance. My father-in-law was supposedly on AS with a G7 but he didn't get regular scans - they were only monitoring his PSA which turned out to be unreliable (Henry, unfortunately PSA is not always a good marker). He died 4 years after diagnosis because it had spread unnoticed. AS has served your OH well so far; which must be reassuring?

Was it just the surgeon that said brachy / RT would not be suitable? Have you seen an oncologist to discuss the possibilities?

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

User
Posted 12 Apr 2016 at 00:24

Hi Lyn. Yes we have seen an oncologist and she also thought surgery should be the preferred treatment, with radiotherapy held in reserve in case of recurrence. Tbh no-one seemed to think radiotherapy etc would be a good idea as first treatment though we did request an appointment at the centre that would do brachytherapy but we are still waiting for that. We have just given up on our original hospital as it was impossible to get to talk to anyone and the specialist nurse was hopeless. The current hospital, where he would (?will) have surgery, is a million times better so far
The oncologist we saw last week said that John's high PSA could not really be explained by the scan/biopsy results but it is fairly stable
Thanks again

User
Posted 12 Apr 2016 at 00:58

Hhhhmm, it's really tough for you when it seems radical treatment is needed but the OH is simply not ready for it yet.

The thing is, I don't think you could call it active surveillance anymore if he still doesn't agree to treatment after he has had a little breathing space. AS is used to describe the proactive monitoring of a cancer to ensure it isn't progressing, and - if it does progress - to identify when a tipping point has been reached where intervention is necessary. In your case, it has progressed significantly and the moment of intervention has been reached so having no treatment from this point on isn't really AS, it is 'choosing not to have treatment'. I hope that by the time of his next review he will feel more confident in the new medical team.

How high is his PSA? I couldn't see it anywhere in your postings or profile.

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

User
Posted 12 Apr 2016 at 02:24

Hi BJS,
I certainly would not suggest treatment (at any stage) for somebody else. However, if I was in this position with some of the cancer in new areas and already Gleason 4, I would be concerned that my cancer was becoming more aggressive and widespread and would not wish to miss the opportunity of treating it whilst still contained. My thinking is influenced by the fact that I was diagnosed with a 3+4=7 Gleason but with a T3A staging which meant the cancer was in the process of breaching the capsule, so I was strongly advised not to have surgery. (I subsequently had RT and more recently HIFU). Had I been diagnosed and treated some months earlier, it might have been possible to have removed all the cancer - an 'if only'.

It might be an idea for your husband to obtain assurance that the cancer is still well contained and ask whether another MRI in say 3 months might be useful in determining the urgency for treatment, if he has definitely decided to defer it meanwhile.

Barry
User
Posted 12 Apr 2016 at 09:13

thanks Barry
the cancer stage is, as far as we can tell, T2C but the last MRI, when read by an independent radiologist, was said to be very poor and in a second opinion the consultant wasn't sure it was good enough to make such a decision. J is now scheduled for a better scan (3 tessler) in August

Lyn I will pm you

Thanks all
B

User
Posted 12 Apr 2016 at 13:43

I can certainly see the sense in waiting for the Tesla scan in August before giving the final go ahead for the op, particularly as the person you have seen is one of the leading PCa experts in this country. As the PSA is not rising, it is entirely possible that he was always a 3+4 and it was simply that the previous biopsy didn't spear any of the 4s.

I still don't understand the rationale for RT not being suitable - usually the advice is the other way round and men whose cancer is too developed for curative surgery may still be offered curative RT. Have you actually seen an oncologist or only the two surgeons?

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

User
Posted 12 Apr 2016 at 14:32

we did see an oncologist at the original hospital (which we have now totally lost faith in and left). I was a bit puzzled as to the lack of enthusiasm for RT. Maybe we need to pursue it a bit more. They kept going on about RT making the flow worse - I'd never thought his flow was that bad, although it certainly got better on tamsulosin. He did have all the flow tests when he was originally diagnosed so I suppose they know what they are talking about. All along we have been told that they wanted to keep RT in reserve as you can have RT after surgery but not the other way round
Personally I believe the 4s were probably there all along. The first biopsy couldn't get to that area as it was TRUS. And it could explain why the PSA didn't increase over the past 2 years

User
Posted 13 Apr 2016 at 22:35

Hi B

Like Lyn (and Lyn and I don't always see eye to eyre!) I can't see why RT or even brachy hasn't been considered for your man. Re flow - as I've said before I had flow problems prior to brachy. It depends what is causing the flow problems but some hospitals will carry out a limited TURP before brachy to reduce possible flow problems. Without the limited TURP, if your man has flow problems now they are likely to get worse afterwards.

dl

User
Posted 13 Apr 2016 at 23:38

Don't we? If there has been an issue I can't remember it DL :-/

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

User
Posted 14 Apr 2016 at 13:27

thanks both. Think we (I!) should push for more info on RT/brachy then. OH seems convinced he can't have it - not sure why but clarification needed
B

User
Posted 14 Apr 2016 at 13:47

It might be that there is a really good reason - and perhaps your OH knows more than you ... is it possible that his flow is worse than he has ever told you, for example? Or that it could have been explained to him in a discussion that you were not party to? We did have a partner on here a while back who was extremely angry and frustrated that her OH was not being offered treatment that she (and some of the members on here) thought he should be given. Only after she had a go at the specialist did it come to light that her OH had privately told the specialist that he was not willing to have treatment.

Any which way, if he remains steadfastly reluctant to have surgery even though his stats start to look worrying, RT / brachy / HIFU / whatever else might begin to look feasible even if they were not the doctor's first choice.

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

User
Posted 14 Apr 2016 at 14:25

thanks Lyn. I think if the 3T MRI and the next consult with [un-named] consultant confirm the necessity of surgery, then he will do it, and probably with more confidence of it being the right choice than he had before
He hasn't had any meetings without me being there (his choice) so I can only assume that his flow test etc and the fact that the cancer is apparently on both sides (and top and bottom) rule out RT etc as first choice treatment
Thanks again
B

 
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