Originally Posted by: Online Community MemberHi All, I have just been diagnosed with PCa. I'm 41 and my PSA is 5.4 (rising from 4.9 over ~12m) and my Gleeson score is 6. When I had the biopsy I had 12 samples taken and 4 have come back as level 3. All treatment options are available to me and I've been given copies of the toolkit publications for each treatment.
I'm now at a loss to what to do for the best. Part of me wants to go with Active Surveillance as I'm not prepared yet to cope with the prospect of ED but on the other hand is it better to get treatment, such as brachytherapy, now as the cancer is only likely to get larger and harder to treat and recovery longer as I get older?
I'm happily married with kids (and we've already decided not to have more so fertility isn't an issue). Unfortnately my consultant didn't seem keen to express an opinion just stated that the panel had reviewed the case and decided to make all treatment options available to me. I have absolutely no idea what to do for the best outcome.
I'd really appreciate thoughts on this if you have any. Am I better getting treatment sooner rather than later or is delaying treatment until absolutely necessary the better option to make the most of what I have now?
Thanks,
Andrew.
Hi Andrew and welcome to the site, but sorry that you are here searching.
You are at probably the worst stage with PCa, having just been diagnosed and with little or no knowledge and even less help apparently around about what to do and where to go from here from the medical professionals so far.
As far as I am aware a medical professional will only offer their own specialism, be that surgery, or other non-invasive treatment option. None will state that there option is the "best" in terms of outcomes, because they can not guarantee that.
You should be mindful of well meaning others telling you or coercing you into a treatment option they would have you undergo. It's easy for others, they will not have to deal with the consequences of what should be your, or may be their, choice. Others who have had a treatment option which has not worked may regret that option, that may or may not be relevant for you, there is no way of knowing what their situation would be had they made a different choice back then.
Your PCa might be a so called "pussycat", ac slow grower over time and you may be able to delay external or invasive treatments? It may become more aggressive, a "tiger" and require treatment.
ED is not guaranteed through a surgical option, nor is loss of urinary control, or bowel control loss, or loss of life. A surgeon will mention all these to you if you go that route.
As for talking to lots of people, that can be a good thing and it can be a bad thing? Too many opinions can confuse an already difficult choice.
What questions have you asked of the medical people you have spoken with this far?
You are asking the question that all of us men ask at the beginning, "what should we do?" And the only person who can answer that after you have done your research is you.
Only you know what risks you are prepared to take at any stage. Whether that be active surveillance, waiting and seeing what happens with monitoring? Surgery, open or robotic, with any or all of the possible side effects of that surgery? Brachytherapy, the implanting of radio active seeds to target and kill the cancerous cells.
Plenty of men here who have selected all the various options and are all doing very well, thank you. There is no clear "winner" in the treatment option stakes. If there was a clear winner, then the NHS would offer that above all others.
One piece of advice for you to consider is that once you make a choice that you and your family are happy with, don't look back. There is no point regretting, you make your best choice with the knowledge you have at that time, as we all do, even those who express regret later on.
So, in summary, look into your options thoroughly, weigh up the pros and cons that you can cope with and live with for each treatment option, make your choice and then go for it 100%.
good luck
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Hi Andrew
It's really hard to give constructive advice. We have all had different journeys and we are all very individual in ourselves on this site. I'm glad you've read the toolkit. That's brilliant mate. Click my picture and read my profile if you want.
For me , if I'd been told AS was ok I'd have done that. I ended up with surgery and now regret that as I need HT / RT anyway. I was lucky with continence but still have full ED 7 months on. Some folk are "get it out". I wanted to bury my head in the sand. People will post but at the end of the day you have to make a decision and stick with it. VERY difficult. So sorry for you. I'm only 48. Take care and post and ask anything ok
Chris
User
Hi andrew,
It's a tough one. But a decision that only you and your family can make. Some points you might like to consider.
1. You do have some time. You've caught it early.
2. Research everything. Talk to lots of people.
3. Opting for surgery will get rid of the cancer, and, assuming it is contained and the surgical margins aren't breached, it will also give you a level of peace of mind.
4. If you opt for surgery at an early stage, there may be a greater chance that the surgeon can do complete nerve sparing (although this doesn't guarantee no ED, it does make natural erections more likely post op)
5.can you live with active surveillance? Some people can't.
6. AS may give you time to come to terms with the inevitable. As you are so young, it is almost certain you will need to have treatment.
7 surgery side effects turn up sooner than RT.
Try and look on your early diagnosis as a positive. There are so many men on this site who were probably at the same disease stage as you at age 41. Sadly by the time they were diagnosed, they were much older and much further on. You do have all options open to you. I would take time to look at them all. Write an advantages and disadvantages list for each one. For each point on the list, give it an importance mark out of ten. Add them up and see what happens.
Good luck
Louise
User
Hello Andrew and welcome.
It's good that you PC has been caught early (not so good of course that you actually have it!)
You are in the "lucky" camp in that all options are open to you.
I can only agree with the others insofar as taking your time. Some men on here have asked the consultant what he would do if he as sitting on your side of the desk and some have had a definite answer but it would be rare for them to commit themselves like that. You and your wife are the ones who have to live with the result.
All treatments have the potential to leave lasting side effects, even Active surveillance if left too long.
You say that you were given the toolkit and you have looked through it
My husband (75) had a PSA of 6.3 and Gleason of 3+4 by the time he had to make a decision, having been in Active Surveillance for a year.
Even at his age he was, like you, uneasy at the possibility that he may end up incontinent and/or with ED.
Have you talked it all over with your wife, including the possibility of ED, after all, she is young too (I assume)
If you are treated fairly soon with surgery, or indeed any of the major treatments you may well come through it all with only temporary effects but it is a risk.
Only you know whether you could live on Active Surveillance. AS means you are literally actively monitored on a regular basis with PSAs and biopsies. If anything moves in the wrong direction you will know very soon and can then start from there.
It's very difficult for you both but remember we are all here to offer help and advice , although nobody is likely to say go for A or B. If only it was that easy.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
Hi Andrew
not a lot more I can add to the wise words of those who have already posted. Just welcome to this friendly, helpful forum.
41 is a very young age to be diagnosed, out of curiosity and if you are Ok to answer such a leading question, was it diagnosed through you presenting to your GP with symptoms, do you have a family history of the disease so got tested young? I ask because other men I know your age, (including my own stepson) have been refused a PSA test by their GP . In my opinion that is so wrong.
I think you should really take your time to work out the most important things for you and your family, at the end of the day it is your decision and should be your decision based on what you want.
Statistics probably do not exist for weighing up the options at your age group, traditionally the stats are looked at from age 50 up, so won't be that helpful. That is changing but of course it takes time to become meaningful.
The medical team will not advise what to do, they can't they can only tell you what the options are and what each entails.
Anyway, I hope a few more of the Men on the forum post for you, us ladies understand as best as it is possible to from the experiences of Men in our lives, but it is such a personal disease we can't truly know how it feels at all.
my best wishes
xx
Mo
By the way a note for other forum members and possibly the moderators, we really do need a stickie for this query too. It must be one of the most common questions asked in the treatment topic group. I wonder how this query would have fared for responses if raised in one of the new topic groups? would any of those that answered so far have even seen it?
User
Hi Andrew
So sorry that you and your family find yourselves in this position at such a young age.
I would say that Dave has summarised the situation so well and I cannot add anything to what has been said.
I wish you all the best with whatever you decide to do and I know that whatever that is you will always get support from some very knowledgeable folk on this site.
Kevan
User
Hi Andrew,
A lot has been covered by other replies but here is my experience.
I came here 12 months ago in the same situation and scared shitless.
A healthy (or so I thought) 55 year old with a 5 year old daughter to consider.
You will get lots of advice from people via this website and it has helped me with lots of caring folk having an input.
What you have to consider is its THEIR experience and every case and situation differs.
Only you and your family can decide which route to take.
I opted for active surveillance and have just had another 3 month check up yesterday.
Over the 12 months since I was diagnosed my PSA levels keep falling.!!!!
Started at 7.5 (I think) and yesterday sat at 2.2
We decided on AS as we didnt want to change the quality of life until it was really neccesary (which hopefully will be a long way of)
So its not all doom and gloom and as a family we are happy with the choice we took.
It does take a lot of guts to opt out of treatment and a lot of close family and friends could not understand why I took that road.
Read up about all options,talk to people,take advice BUT in the end YOU have to make the decision which is not easy and as mentioned once the choice is made dont have any regrets.
Good luck.
Just a foot note...my specialist also told me "all options" were possible and when I went back and told him we had decided on AS he said thats what the panel had also recomended BUT they had to hear it from me.
Edited by member 14 Jan 2016 at 09:55
| Reason: Not specified
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User
Hi Andrew
It's really hard to give constructive advice. We have all had different journeys and we are all very individual in ourselves on this site. I'm glad you've read the toolkit. That's brilliant mate. Click my picture and read my profile if you want.
For me , if I'd been told AS was ok I'd have done that. I ended up with surgery and now regret that as I need HT / RT anyway. I was lucky with continence but still have full ED 7 months on. Some folk are "get it out". I wanted to bury my head in the sand. People will post but at the end of the day you have to make a decision and stick with it. VERY difficult. So sorry for you. I'm only 48. Take care and post and ask anything ok
Chris
User
Hi andrew,
It's a tough one. But a decision that only you and your family can make. Some points you might like to consider.
1. You do have some time. You've caught it early.
2. Research everything. Talk to lots of people.
3. Opting for surgery will get rid of the cancer, and, assuming it is contained and the surgical margins aren't breached, it will also give you a level of peace of mind.
4. If you opt for surgery at an early stage, there may be a greater chance that the surgeon can do complete nerve sparing (although this doesn't guarantee no ED, it does make natural erections more likely post op)
5.can you live with active surveillance? Some people can't.
6. AS may give you time to come to terms with the inevitable. As you are so young, it is almost certain you will need to have treatment.
7 surgery side effects turn up sooner than RT.
Try and look on your early diagnosis as a positive. There are so many men on this site who were probably at the same disease stage as you at age 41. Sadly by the time they were diagnosed, they were much older and much further on. You do have all options open to you. I would take time to look at them all. Write an advantages and disadvantages list for each one. For each point on the list, give it an importance mark out of ten. Add them up and see what happens.
Good luck
Louise
User
Hello Andrew and welcome.
It's good that you PC has been caught early (not so good of course that you actually have it!)
You are in the "lucky" camp in that all options are open to you.
I can only agree with the others insofar as taking your time. Some men on here have asked the consultant what he would do if he as sitting on your side of the desk and some have had a definite answer but it would be rare for them to commit themselves like that. You and your wife are the ones who have to live with the result.
All treatments have the potential to leave lasting side effects, even Active surveillance if left too long.
You say that you were given the toolkit and you have looked through it
My husband (75) had a PSA of 6.3 and Gleason of 3+4 by the time he had to make a decision, having been in Active Surveillance for a year.
Even at his age he was, like you, uneasy at the possibility that he may end up incontinent and/or with ED.
Have you talked it all over with your wife, including the possibility of ED, after all, she is young too (I assume)
If you are treated fairly soon with surgery, or indeed any of the major treatments you may well come through it all with only temporary effects but it is a risk.
Only you know whether you could live on Active Surveillance. AS means you are literally actively monitored on a regular basis with PSAs and biopsies. If anything moves in the wrong direction you will know very soon and can then start from there.
It's very difficult for you both but remember we are all here to offer help and advice , although nobody is likely to say go for A or B. If only it was that easy.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
Originally Posted by: Online Community MemberHi All, I have just been diagnosed with PCa. I'm 41 and my PSA is 5.4 (rising from 4.9 over ~12m) and my Gleeson score is 6. When I had the biopsy I had 12 samples taken and 4 have come back as level 3. All treatment options are available to me and I've been given copies of the toolkit publications for each treatment.
I'm now at a loss to what to do for the best. Part of me wants to go with Active Surveillance as I'm not prepared yet to cope with the prospect of ED but on the other hand is it better to get treatment, such as brachytherapy, now as the cancer is only likely to get larger and harder to treat and recovery longer as I get older?
I'm happily married with kids (and we've already decided not to have more so fertility isn't an issue). Unfortnately my consultant didn't seem keen to express an opinion just stated that the panel had reviewed the case and decided to make all treatment options available to me. I have absolutely no idea what to do for the best outcome.
I'd really appreciate thoughts on this if you have any. Am I better getting treatment sooner rather than later or is delaying treatment until absolutely necessary the better option to make the most of what I have now?
Thanks,
Andrew.
Hi Andrew and welcome to the site, but sorry that you are here searching.
You are at probably the worst stage with PCa, having just been diagnosed and with little or no knowledge and even less help apparently around about what to do and where to go from here from the medical professionals so far.
As far as I am aware a medical professional will only offer their own specialism, be that surgery, or other non-invasive treatment option. None will state that there option is the "best" in terms of outcomes, because they can not guarantee that.
You should be mindful of well meaning others telling you or coercing you into a treatment option they would have you undergo. It's easy for others, they will not have to deal with the consequences of what should be your, or may be their, choice. Others who have had a treatment option which has not worked may regret that option, that may or may not be relevant for you, there is no way of knowing what their situation would be had they made a different choice back then.
Your PCa might be a so called "pussycat", ac slow grower over time and you may be able to delay external or invasive treatments? It may become more aggressive, a "tiger" and require treatment.
ED is not guaranteed through a surgical option, nor is loss of urinary control, or bowel control loss, or loss of life. A surgeon will mention all these to you if you go that route.
As for talking to lots of people, that can be a good thing and it can be a bad thing? Too many opinions can confuse an already difficult choice.
What questions have you asked of the medical people you have spoken with this far?
You are asking the question that all of us men ask at the beginning, "what should we do?" And the only person who can answer that after you have done your research is you.
Only you know what risks you are prepared to take at any stage. Whether that be active surveillance, waiting and seeing what happens with monitoring? Surgery, open or robotic, with any or all of the possible side effects of that surgery? Brachytherapy, the implanting of radio active seeds to target and kill the cancerous cells.
Plenty of men here who have selected all the various options and are all doing very well, thank you. There is no clear "winner" in the treatment option stakes. If there was a clear winner, then the NHS would offer that above all others.
One piece of advice for you to consider is that once you make a choice that you and your family are happy with, don't look back. There is no point regretting, you make your best choice with the knowledge you have at that time, as we all do, even those who express regret later on.
So, in summary, look into your options thoroughly, weigh up the pros and cons that you can cope with and live with for each treatment option, make your choice and then go for it 100%.
good luck
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Hi Andrew
not a lot more I can add to the wise words of those who have already posted. Just welcome to this friendly, helpful forum.
41 is a very young age to be diagnosed, out of curiosity and if you are Ok to answer such a leading question, was it diagnosed through you presenting to your GP with symptoms, do you have a family history of the disease so got tested young? I ask because other men I know your age, (including my own stepson) have been refused a PSA test by their GP . In my opinion that is so wrong.
I think you should really take your time to work out the most important things for you and your family, at the end of the day it is your decision and should be your decision based on what you want.
Statistics probably do not exist for weighing up the options at your age group, traditionally the stats are looked at from age 50 up, so won't be that helpful. That is changing but of course it takes time to become meaningful.
The medical team will not advise what to do, they can't they can only tell you what the options are and what each entails.
Anyway, I hope a few more of the Men on the forum post for you, us ladies understand as best as it is possible to from the experiences of Men in our lives, but it is such a personal disease we can't truly know how it feels at all.
my best wishes
xx
Mo
By the way a note for other forum members and possibly the moderators, we really do need a stickie for this query too. It must be one of the most common questions asked in the treatment topic group. I wonder how this query would have fared for responses if raised in one of the new topic groups? would any of those that answered so far have even seen it?
User
Hi Andrew
So sorry that you and your family find yourselves in this position at such a young age.
I would say that Dave has summarised the situation so well and I cannot add anything to what has been said.
I wish you all the best with whatever you decide to do and I know that whatever that is you will always get support from some very knowledgeable folk on this site.
Kevan
User
Andrew
Just a post script
My husband asked the urologist to tell him what he (the urologist) would do if he had the results that were faced with.
He answered 'surgery'. That's what we did.
Sometimes it's in the phrasing
User
Thanks all for the replies - I really appreciate it.
Thinking over night rather than what treatment is best I'm more wondering if there are advantages with starting the treatment sooner rather than later in terms of the cancer being easier to eliminate (as it's had less time to develop) and possibly a better recovery outcome from being younger. I appreciate there's not going to be a definative answer available to this but this is essentially the question I'm trying to decide at the moment.
Andrew.
User
Edamo - I went to my GP as my urine flow is occassionally sub-standard. My GP wasn't concerned when my PSA came back at 4.9 and I was refered to a clinic to look at the bladder side of things. It's only when the nurse there send me back to the GP for another PSA test which came back as 5.1 that I was referred (but the GP even then didn't expect the hospital would find this concerning). The next PSA at the hospital came back at 5.4 so they pushed me to have a biopsy due to the steady increases.
Andrew.
User
Hello Andrew
My Gleason was 6, and I was unsure of what to do. It's very difficult with very little knowledge of PC. I read the toolkit from this site over and over again, and having had many discussions with my wife and 2 sons. You will find people on this site very knowledgable with all the different treatments available.
You have time to choose your options. I agree with others, once your decision is made don't look back. I have no regrets of the treatment I chose, I'm hopefully cured and happy again.
Best wishes
Colin
User
Hi andrew
I can rember back to a time 20years ago in my 40s when i first went to gp re to many loo visits
Was only sent for blood test to see if diabetic didnt have a clue re PCa
Result came back not diabetic go away
So here we are 1yr since my diagnosis and in the no cure camp
So pick your treatment wisely dont rush in to it all the best for the future
Regards
Nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Hi Andrew,
A lot has been covered by other replies but here is my experience.
I came here 12 months ago in the same situation and scared shitless.
A healthy (or so I thought) 55 year old with a 5 year old daughter to consider.
You will get lots of advice from people via this website and it has helped me with lots of caring folk having an input.
What you have to consider is its THEIR experience and every case and situation differs.
Only you and your family can decide which route to take.
I opted for active surveillance and have just had another 3 month check up yesterday.
Over the 12 months since I was diagnosed my PSA levels keep falling.!!!!
Started at 7.5 (I think) and yesterday sat at 2.2
We decided on AS as we didnt want to change the quality of life until it was really neccesary (which hopefully will be a long way of)
So its not all doom and gloom and as a family we are happy with the choice we took.
It does take a lot of guts to opt out of treatment and a lot of close family and friends could not understand why I took that road.
Read up about all options,talk to people,take advice BUT in the end YOU have to make the decision which is not easy and as mentioned once the choice is made dont have any regrets.
Good luck.
Just a foot note...my specialist also told me "all options" were possible and when I went back and told him we had decided on AS he said thats what the panel had also recomended BUT they had to hear it from me.
Edited by member 14 Jan 2016 at 09:55
| Reason: Not specified
User
Thanks Tomoholland - do you or your doctors understand why your PSA is going down? I'd assumed that an increasing PSA was inevitable once diagnosed. When considering AS I'd assumed that treatment was only really being delayed and given my age it would eventually be required.
Andrew.
User
AndrewC
I have known my specialist socially for around ten years (when he was doing his training he worked in one of my local bars) and on first diagnosis he was very concerned about my PSA due to our social friendship so we went on and did the biopsie and all the other tests and when he broke the news I had PC my whole world just seem to collapse.
By the way I am living in Holland so the health care may be a little different than the UK even though PC is the same.
But after a clear MRI in October( to check if the cancer had spread into my bones or not ) and then a continued falling of the levels over the last 12 months he is happy.
He does say though as quick as it has gone down it could also go back up.
This is the beauty (in my opinion) of selecting Active Surveillance....NO side affects from treatment and very little change in quality of life whilst keeping a close check on the behaviour of the cancer.
If I do need treatment then we will cross that bridge when we come to it.But I will look back and say "I put it off "to have more "good years" with my wife and young daughter
I feel that at this moment the family and I have made the right choice to suit US.
Some mates do still question this mind you.
That is what you need to consider.
What YOU feel is best for YOU and your family and if you can handle knowing you have PC and learning to live with it.
It does take a strong unit of yourself, wife, friends and family to accept this if you choose to go for AS.
At your young age there is no gaurentee what you say "as the cancer is only likely to get larger and harder to treat and recovery longer as I get older" ........as my case has shown (at present)
So try and stay possative.
To be honest the only time I think about it now is just before go for my 3 month PSA test then of course you are nervous about the results and how the cancer has behaved.
The specialist jokes that I will proberbly die of something else at an old age rather than PC.
Hope this has helped in some small way and again all the best on your journey which ever route you choose.
Edited by member 16 Jan 2016 at 16:53
| Reason: Not specified
User
In some of the research data focused on men on AS there has been a suggested link between falling PSA and diet. There are some evangelistic views about things like the Jane Plant diet which you would need thread and consider carefully but much stronger evidence that reducing your consumption of red meat, dairy and processed foods coupled with an increase in oily fish, garlic, onions and cooked tomatoes can reduce PSA. What the scientists haven't proved yet is whether that lowering PSA indicates a slowing of the cancer development or whether it creates a false low. There was some data collected in Greece (where men are much more likely to be on AS apparently) that men on Mediterranean diets are less likely to have advanced PCa
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Originally Posted by: Online Community MemberIn some of the research data focused on men on AS there has been a suggested link between falling PSA and diet. There are some evangelistic views about things like the Jane Plant diet which you would need thread and consider carefully but much stronger evidence that reducing your consumption of red meat, dairy and processed foods coupled with an increase in oily fish, garlic, onions and cooked tomatoes can reduce PSA. What the scientists haven't proved yet is whether that lowering PSA indicates a slowing of the cancer development or whether it creates a false low. There was some data collected in Greece (where men are much more likely to be on AS apparently) that men on Mediterranean diets are less likely to have advanced PCa
Thats definately not in my case LynEyre.
I will have a deeper discussion with my doctor when I go for another biopsy in March because to be honest each time he gives me possative news I just want to get out of there and punch the air ;-)
Maybe I am just extremely lucky (at the moment) but I have not changed anything in my lifestyle.
Still eating everything drinking everything and still grafting 12 hours a day on site in the frozen wastelands of Norway.**
But now you have mentioned it,I do eat fish nearly every day (the typical Norwegian diet contains a lot of fish) garlic onions and tomatoes but have not cut down on red meats or dairy products or even alcohol.
** To to explain I am English living in the Netherlands for 18 years but for ther past five years I work in Norway on 12 days work 9 days at home shift patterns.
User
Hi do you mind me asking what your Gleason score was etc. I am 44 and diagnosed March 2016 g6 psa 5.4.
Mdt meeting advised active surveillance best option only had 1 core in 40 cancerous and small amount 3.5%.
Really positive to hear your AS is working well for you. I've also got Bph and prostate is 84cc I have read this can make psa go up as well so waiting till June now for my first AS check.
Andrews
User
Hi Barney, Tomo and Andrewc were both Gleason 6 (3+3) - it would be quite unusual to find anyone on active surveillance any higher than that although we do have one member who has recently risen to G7 (3+4) and is going to stay on AS for a little while longer. My father-in-law was a G7 on AS but it wasn't very successful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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