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User
Posted 14 Oct 2015 at 21:22

Hi

I Have just been diagnosed with prostate cancer.  I am lucky because it is in its early stages and localised.  Just looking at the treatments and wondered if anyone could give their view on which to go for.  The options I am looking at ar Active Surveillance, Brachytherapy, Radical prostatectomy, External beam radiotherapy and hormone therapy.

 

Any view would be welcomed.

 

Paul 

User
Posted 16 Oct 2015 at 12:18

Hi Chris,

A lot of people hold very strong views on the subject of PSA Screening and I am a bit reluctant with where this post is going incase I set everyone off arguing again.

My concern is that we frequently see new guys on this site, newly diagnosed with a low Gleason score, opting for prostectomy within days of diagnosis in the naive belief that they have caught some deadly disease which can be simply cured by cutting it out.

The doctors tell us that most men of our age have PCa, most don't know it, and most will live to a ripe old age and die of something else without being aware they ever had PCa.

It was easy for me in that I was high Gleason and not given too many choices, my doctors reackon I would deffinately be dead by now if I hadn't been treated.  And better men than me, with similar diagnosis have fallen by the wayside.  But I also know men, who opted for a quick solution ending up impotent and incontinent who rue the day they had their PSA tested. 

As one doctor, talking of low gleason simple prostectomies put it, 'I am very good at saving the lives of men who were never going to die of prostate cancer'. 

He went on of course to explain that he only wished that there was a foolproof way of identifying the tigers and pussycats at an early stage. So I wouldn't criticise anyone who having done their homework decided that they would rather risk 50/50 chance of incontinence/impotence, than a 1/40 chance of death from PCa.

And of course the 'facts' keep changing, new scientific discoveries mean that there are ever more options.  I seem to remember that watchful waiting was once just for the over 80's, now it seems increasingly the vogue for much younger guys?

It is for these reasons that I encourage new guys to take their time, learn all that they can, and then make an informed decision, whatever that may be.

As the old saying goes act in haste, repent at leisure!

:)

Dave 

User
Posted 17 Oct 2015 at 08:28

Hi Guys,

Let me appologise, I didn't mean to upset anyone, and Alan in particular, now that I have read the string again, I can understand why you think I was having a pop at what you said.

So I am very sorry, I didn't set out to criticise anyone and I can see that I will have to be more sensitive in future.

When I wrote that last post I was responding to Chris' post about his brother being a 50 year old Consultant radiologist who hadn't considered it wise to get his own PSA tested. 

:)

Dave

 

User
Posted 17 Oct 2015 at 16:02

I thanked Daves post. I thought it was good. We are ALL different and have conflicting views. I have mental health issues and I don't care who knows it on the forum. I won't be the first or last to deal with PCa and mental health at the same time. I was emotionally bullied into LRP and wish I had stuck to my guns , especially now I've found it was a failure and need HT / RT , as well as coping with the inevitable impotence.
I have been SO grateful for the views and opinions and advice I have received since being on the site. It has been awesome and has helped me. I'm glad the advice is varied and people should speak their mind / experience generally as long as they aren't impolite. Not everyone is " glass half full "
Thanks again everyone
Chris

If life gives you lemons , then make lemonade

User
Posted 18 Oct 2015 at 18:04

Like Lyn, my first thought was 'What on earth is wrong with Dave K's post'.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

 

I could see absolutely nothing there but very good advice to newly diagnosed men, urging them to consider all options very carefully. and never be rushed into things.

Nobody here would ever urge another member to go for a specific treatment.

As has been said, each of us has a unique DNA and our own individual cancer type. Each one of us will require the treatment that is best for us.

10 years ago my brother-in-law rang me in a state of shock.

He had just been diagnosed with PCa and the urologist wanted him in a few days later to undergo a radical prostatectomy.

Because he knew I'd been diagnosed some time before, he asked what he should do.

I told him to do nothing until he had seen a clinical oncologist at out local specialist cancer unit.

He was seen within a week, and was told he'd be ideal for brachytherapy.

Since then his results have been amazing. He has PSA results I could only dream of seeing, has had no side effects at all, and has never missed a day's work since the procedure.

 

 

I will say that a lot of us 'long term survivors' on this forum, whose cancer was inoperable, have seen a worrying number of cases where an RP hasn't 'cut the cancer out' at all, and the repercussions have been very bad.

 

Is anyone here good at finding official statistics on line?

I would love to know the answer to this question:

 

What percentage of men who have undergone an RP have had a completely successful outcome and gone on to live for 15 or 20 more years?

 

 

 

George

 

 

 

B2PCa
User
Posted 16 Oct 2015 at 20:48

A lot of assumptions and presumptions there DK, and others.

Is this person's cancer slow growing? What do you base this statement on?

Unless you are that person who will have to live, or die, with the consequences of a treatment choice, should you be pushing someone to "that" choice?

PCa may be slow growing, or it may be not, depending on the results of a series of PSA tests, and that is only a guide, do we have a series of tests to judge that rate of growth here?

As far as I am aware the growth or acceleration of PCa is like a roller coaster starting up? All tow tow tow until you reach the tipping point, the cusp. And then if's a free for all. Down the track, out of control. And may be too late for some. May be too late for some treatment options?

As for your suggestion, claim, assertion that it is a "naive belief" about people's choices, who are you to say that they are naive?

Your post is at best well intentioned but naive, at worst, reckless.

Unless you are wiling to take responsibility for others outcomes, and you can not as you will not suffer as they would, surely you should only offer options and outline associated consequences?  I mean, why not suggest that men simply cross their fingers and trust to luck?

This is why internet forums do not do.

atb

dave

who is glad that your advice did not guide me when I was diagnosed.

Edited by member 16 Oct 2015 at 20:50  | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 16 Oct 2015 at 22:30

CB and Alan, I think you have both been a bit quick here. Personally, I hate it when people post that PCa is slow growing (it isn't particularly slow for those men with bone mets in their 40s or 50s is it?) but Dave doesn't seem to be promoting any particular treatment option - he is saying what most of us say "take your time and do your homework"

Neither of you opted for RP within days of diagnosis but we have had members who rushed into it without a realistic understanding of the side effects, possible outcomes, etc (my husband being a case in point) - Dave may not have worded it quite as he intended but I think the sentiment was good.

As it happens, the Addenbrookes project seems to be finding similar results to a large European one a few years ago - overall, men with G3+3 / G3+4 and low PSA do just as well on AS as with surgery

Edited by member 16 Oct 2015 at 22:38  | Reason: Not specified

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

Show Most Thanked Posts
User
Posted 15 Oct 2015 at 07:10

Hello Paul and welcome.

Nobody on here will give advice as to which option to go for. We are all so different in the stages we are at and what treatment suits us. All we can do is tell you what it is like for us.

For my husband for instance it was active surveillance for a year and when the PSA started to rise he opted for seed implant Brachytherapy.

If you click on the name under any avatar (picture) you will come to that person's profile which might help

If you go to Publications on this site you can down load the Toolkit, a set of leaflets giving the various treatments and POSSIBLE side effects. I stress possible since it isn't a given that two men with the same area of cancer will react in the same way to the same treatment.

It seems like you have time on your side so do not be hasty in your decisions.

We are good at listening, if you feel like a rant. We are also good at practical advice when you need it.

Ask any questions you want, nothing is taboo if it's relevant to Prostate cancer

If you post your PSA and Gleason scores it may help people offer their advice.

 

All the best

Sandra

Edited by member 15 Oct 2015 at 07:13  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 15 Oct 2015 at 07:31

Hello Paul
Welcome but sorry to see you here.
If your PCa is localised ie hasn't spread then generally you have more options and a better chance of "cure". But nothing is guaranteed and everyone is different.

My own case was that the pc had spread so I went onto HT and was also given an option of going on a Stampede trial which I took up.
My psa started at 235 in Jan this year and is now bumbling along at .03. I've few side effects like hot flushes and am fatigued quicker.

I know many others will also come on to give their own experiences

Hope this helps a bit but do post more of your details so we can advise you better.

Paul

User
Posted 15 Oct 2015 at 07:43

Hi Paul,

As Sandra said do you know your results it gives a better idea of where you are clinically? My cancer was contained but the scan showed it was starting to break out. Please check my profile.

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 15 Oct 2015 at 08:54
Hi Paul

Another treatment you may want to look into is HIFU. You may not have been offered this as it may not be available at your hospital, but you could possibly get a referral to another hospital that carries out this type of treatment. I am not saying this is the way to go, just wondered if you were aware of it. Also there are other types of treatments which are being trialed.

All the best

Roy

User
Posted 15 Oct 2015 at 09:31

Hi Paul
Agree with all the above . Very early stages yet so no need to panic . Give us your results . Feel free to click on my picture and then read my profile . I'm a recent member having gone through surgery and now need HT and RT
Best Wishes
Chris

If life gives you lemons , then make lemonade

User
Posted 15 Oct 2015 at 18:42

Hi Paul,

The most important fact to get your head around is that prostate cancer is slow growing, therefore you have plenty of time to consider your various options and there is no need to panic and make a quick decision.

There was a Horizon programme on BBC 2 last August ('Should I Test My Health', on BBC Two Wednesday 12 August).

You can find it's written version on the Internet

Dr Vincent Gnanapragasam, who runs a watchful waiting programme at Addenbrokes hospital in Cambridge, tells me: "There was a study which took men with all kinds of prostate cancer and randomised them to having nothing done or radical surgery and at the end of 10 years there was actually no difference in the overall survival. Most importantly the men with low risk cancer had absolutely no evidence of benefit from radical treatment."

So take your time and don't be rushed into a decision.

:)

Dave

User
Posted 15 Oct 2015 at 19:36

Interesting article Dave . My brother is a fully qualified Doctor having made it to consultant Radiologist , and despite my plight and him being 50 , he has yet to take a PSA test .
Chris

If life gives you lemons , then make lemonade

User
Posted 16 Oct 2015 at 12:18

Hi Chris,

A lot of people hold very strong views on the subject of PSA Screening and I am a bit reluctant with where this post is going incase I set everyone off arguing again.

My concern is that we frequently see new guys on this site, newly diagnosed with a low Gleason score, opting for prostectomy within days of diagnosis in the naive belief that they have caught some deadly disease which can be simply cured by cutting it out.

The doctors tell us that most men of our age have PCa, most don't know it, and most will live to a ripe old age and die of something else without being aware they ever had PCa.

It was easy for me in that I was high Gleason and not given too many choices, my doctors reackon I would deffinately be dead by now if I hadn't been treated.  And better men than me, with similar diagnosis have fallen by the wayside.  But I also know men, who opted for a quick solution ending up impotent and incontinent who rue the day they had their PSA tested. 

As one doctor, talking of low gleason simple prostectomies put it, 'I am very good at saving the lives of men who were never going to die of prostate cancer'. 

He went on of course to explain that he only wished that there was a foolproof way of identifying the tigers and pussycats at an early stage. So I wouldn't criticise anyone who having done their homework decided that they would rather risk 50/50 chance of incontinence/impotence, than a 1/40 chance of death from PCa.

And of course the 'facts' keep changing, new scientific discoveries mean that there are ever more options.  I seem to remember that watchful waiting was once just for the over 80's, now it seems increasingly the vogue for much younger guys?

It is for these reasons that I encourage new guys to take their time, learn all that they can, and then make an informed decision, whatever that may be.

As the old saying goes act in haste, repent at leisure!

:)

Dave 

User
Posted 16 Oct 2015 at 20:48

A lot of assumptions and presumptions there DK, and others.

Is this person's cancer slow growing? What do you base this statement on?

Unless you are that person who will have to live, or die, with the consequences of a treatment choice, should you be pushing someone to "that" choice?

PCa may be slow growing, or it may be not, depending on the results of a series of PSA tests, and that is only a guide, do we have a series of tests to judge that rate of growth here?

As far as I am aware the growth or acceleration of PCa is like a roller coaster starting up? All tow tow tow until you reach the tipping point, the cusp. And then if's a free for all. Down the track, out of control. And may be too late for some. May be too late for some treatment options?

As for your suggestion, claim, assertion that it is a "naive belief" about people's choices, who are you to say that they are naive?

Your post is at best well intentioned but naive, at worst, reckless.

Unless you are wiling to take responsibility for others outcomes, and you can not as you will not suffer as they would, surely you should only offer options and outline associated consequences?  I mean, why not suggest that men simply cross their fingers and trust to luck?

This is why internet forums do not do.

atb

dave

who is glad that your advice did not guide me when I was diagnosed.

Edited by member 16 Oct 2015 at 20:50  | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 16 Oct 2015 at 22:30

CB and Alan, I think you have both been a bit quick here. Personally, I hate it when people post that PCa is slow growing (it isn't particularly slow for those men with bone mets in their 40s or 50s is it?) but Dave doesn't seem to be promoting any particular treatment option - he is saying what most of us say "take your time and do your homework"

Neither of you opted for RP within days of diagnosis but we have had members who rushed into it without a realistic understanding of the side effects, possible outcomes, etc (my husband being a case in point) - Dave may not have worded it quite as he intended but I think the sentiment was good.

As it happens, the Addenbrookes project seems to be finding similar results to a large European one a few years ago - overall, men with G3+3 / G3+4 and low PSA do just as well on AS as with surgery

Edited by member 16 Oct 2015 at 22:38  | Reason: Not specified

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

User
Posted 16 Oct 2015 at 22:46

I cant see anything reckless or to be upset by or even to really disagree with - the advice is pretty similar to things you have posted yourself. I imagine DK didn't intend to upset anyone or appear arrogant - he makes quite clear that he also opted for surgery and does not regret it.

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

User
Posted 16 Oct 2015 at 23:39

I would just make the point here that all treatments are continuously being refined and ways of combining treatment are being experimented with. Men need to have been studied for about 10 years and their responses analyzed to establish how more effective these advances have been. So you may say that studies are mostly 10 or so years out of date for men being newly treated. I am convinced that when used in primary and salvage treatment these advances will lead to better outcomes. To complement these treatment advances, better scans are gradually being introduced.

The way to go is to study all the options that your consultants think would be open for you and ask of them any questions you want to know. They will have seen your scans and have your histology to hand and may make a recommendation on what they consider would be your best option. I say may, because quite often you will be told that you could have this or that but they leave you to decide what to plump for. You are not bound to go with their 1st choice if others are offered.

Finally, it almost goes without saying but good treatment done by very experienced practitioners with the best equipment should lead to better results than done by less experienced practitioners using old equipment.

Edited by member 16 Oct 2015 at 23:40  | Reason: Not specified

Barry
User
Posted 17 Oct 2015 at 08:28

Hi Guys,

Let me appologise, I didn't mean to upset anyone, and Alan in particular, now that I have read the string again, I can understand why you think I was having a pop at what you said.

So I am very sorry, I didn't set out to criticise anyone and I can see that I will have to be more sensitive in future.

When I wrote that last post I was responding to Chris' post about his brother being a 50 year old Consultant radiologist who hadn't considered it wise to get his own PSA tested. 

:)

Dave

 

User
Posted 17 Oct 2015 at 08:36

Well i have read it twice now and i must be missing something, but then i usually do http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Alan, i notice you are in Sleaford, i am there next Thursday watching my girls school doing a 13 mile walk for Macmillan around the town.

A nice cup of coffee would be nice on route http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 17 Oct 2015 at 11:15

Group hug?

;-)
dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 17 Oct 2015 at 16:02

I thanked Daves post. I thought it was good. We are ALL different and have conflicting views. I have mental health issues and I don't care who knows it on the forum. I won't be the first or last to deal with PCa and mental health at the same time. I was emotionally bullied into LRP and wish I had stuck to my guns , especially now I've found it was a failure and need HT / RT , as well as coping with the inevitable impotence.
I have been SO grateful for the views and opinions and advice I have received since being on the site. It has been awesome and has helped me. I'm glad the advice is varied and people should speak their mind / experience generally as long as they aren't impolite. Not everyone is " glass half full "
Thanks again everyone
Chris

If life gives you lemons , then make lemonade

User
Posted 18 Oct 2015 at 18:04

Like Lyn, my first thought was 'What on earth is wrong with Dave K's post'.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

 

I could see absolutely nothing there but very good advice to newly diagnosed men, urging them to consider all options very carefully. and never be rushed into things.

Nobody here would ever urge another member to go for a specific treatment.

As has been said, each of us has a unique DNA and our own individual cancer type. Each one of us will require the treatment that is best for us.

10 years ago my brother-in-law rang me in a state of shock.

He had just been diagnosed with PCa and the urologist wanted him in a few days later to undergo a radical prostatectomy.

Because he knew I'd been diagnosed some time before, he asked what he should do.

I told him to do nothing until he had seen a clinical oncologist at out local specialist cancer unit.

He was seen within a week, and was told he'd be ideal for brachytherapy.

Since then his results have been amazing. He has PSA results I could only dream of seeing, has had no side effects at all, and has never missed a day's work since the procedure.

 

 

I will say that a lot of us 'long term survivors' on this forum, whose cancer was inoperable, have seen a worrying number of cases where an RP hasn't 'cut the cancer out' at all, and the repercussions have been very bad.

 

Is anyone here good at finding official statistics on line?

I would love to know the answer to this question:

 

What percentage of men who have undergone an RP have had a completely successful outcome and gone on to live for 15 or 20 more years?

 

 

 

George

 

 

 

B2PCa
 
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