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User
Posted 28 Jul 2015 at 15:08

Hello everybody,


I was diagnosed with prostate cancer in January 2014. My biopsy showed 1 out of 10 cores infected with 3+3 Gleason score and a subsequent MRI scan was clear as regards it spreading. I was put on active surveillance with three monthly blood tests and check ups. My PSA has stayed around 1.9 or 2.0 since that time. I had my follow up biopsies in June of this year which again was 3+3 Gleason but with 5 out of 12 cores showing the cancer. I am due to have another MRI scan soon.


Needless to say, I am worried that it has grown although my consultant said that the 1/10 from the first biopsy may have just underplayed it. I am well generally and living a normal life.


I am hoping to find somebody here who had a history like mine to ascertain how it developed, what they did regards treatment etc. My dilemma is that I wonder whether to continue on active surveillance and risk the cancer spreading or request treatment now. My consultant said that the decision would be made when I have my MRI scan.

User
Posted 28 Jul 2015 at 16:43

Hi Clerkmore
That's a really good post with good information. Im a relatively new person on here so you could read my profile . There are a lot of new people on here who may reply and some amazing elder members who know just how to steer you or to where !
But everyones view is different . Im 6 weeks post-op and getting on ok , but at 48 wish desperately this hadn't happened to me . At one point I was offered surveillance and I would definitely have gone with that , but was then told the cancer was worse than at first suspected . I assume you had TRUS biopsies ?? Apparently you can have loads of cancer and all 10 needles miss it . So not that reliable . Personally I would say always go with the advice of the specialists because they really do want to help you. BUT , take some time making a decision. Download the toolkit from this site so you can understand virtually EVERYTHING that consultants and others discuss with you . If possible speak to Oncology aswell as Urology / surgery , as they offer different solutions generally with different side-effects . I hope this helps , but as I say others will reply who are far more educated . Best of Luck
Chris

User
Posted 28 Jul 2015 at 16:49

Hello clerkmore and welcome to the site.

I can understand your worrying that the cancer is increasing and realistically there is little anyone can say to stop you doing that.
Your consultant may well be right in that the original 1/10 was optimistic which would then make the increase less than it is currently appearing as.

I'm sure there will be other members who can be more informative regarding information on your scores.
However, while you wait for them have you though about downloading or applying for The Tool kit which is available through the publications section of this site.
They are a set of free, informative booklets regarding diagnosis, symptoms and treatments.
If nothing else they will help you make a list of questions to take with you when you next see a consultant.

You have to weigh up the worry of active surveillance and the possibility of an increase in spread or the possible life affecting results of radical treatment.

The more information you can glean the better. BUT try and stick to sites like this one or Cancer research rather than just surfing the web as not all information if relevant and can sometimes be un-necessarily scary.

Best wishes and I hope somebody else comes along soon.
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 28 Jul 2015 at 17:53

Hi Clerkmore,


Your consultant is right when he/ she says wait for the MRI results before making any decisions...

Biopsies can miss tumour(s) .... but if you have been given a Gleason score of 6 ( 3+3 ) on all biopsies including your most recent  it would suggest that there is no need to panic!

Your still relatively low PSA results also suggest that time is on your side.

PSA is not always a reliable indicator to the full extent of PCa as you may know...

If your biopsy has shown that your PCa is one of the more common prostate cancers ie. adenocarcinoma:  type microacinar... then it is arguably more predictable in it's behaviour and your consultant will be able to give you good advice as to which way is the best way for you to proceed at this stage..

Unfortunately I was not recommended as suitable  for AS when I was diagnosed, but would have seriously considered that option if it was deemed to be a realistic alternative to radical treatment.

Good luck with whatever path you choose to take at this stage

Luther


User
Posted 28 Jul 2015 at 18:21
Hi Clerkemore,

I am the wife of a man who was diagnosed on 3.8 PSA with Gleason 6, he has just had Da Vinci 2.5 weeks ago as he would not have been happy to go down the AS route but of course that is up to the individual. I would also suggest you download the toolkit and have some questions ready at your next appointment and see what the surgeon suggests. Your MRI could come back clear and they may suggest to keep checking PSA every three months. Good luck and hope all goes well.

Trish
User
Posted 28 Jul 2015 at 18:48

Hello, I am a female my partner is in a similar situation he was diagnosed in Dec 2103 gleason 6 low PSA, he has jumped from 6 to 7 PSA 1.4 we are on AS and are due back at the hospital in September MRI in November, it is so hard to understand what is going on other then to put your trust in the system :) We are not sure what we are doing as he has stuck his nut in the sand lol I am doing all the leg work but I love him to bits and know he is scared of what the future holds I understand what you are going through as there is no clear cut answer

User
Posted 28 Jul 2015 at 19:47

hi clerkmore


yep you have some big decisions to make, you have done the right thing asking for help on here, have you had a chat with the specialist nurses they always give good advice, good luck with what YOU decide to do


nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 28 Jul 2015 at 22:44

I was originally diagnosed G6, but after a template biopsy, this was upgraded to G7. I could have had AS, but opted for da Vinci surgery. No regrets, but we are all different. Take all the advice you can, but ultimately, the decision is yours.

Good luck.

Paul

Stay Calm And Carry On.
Show Most Thanked Posts
User
Posted 28 Jul 2015 at 16:43

Hi Clerkmore
That's a really good post with good information. Im a relatively new person on here so you could read my profile . There are a lot of new people on here who may reply and some amazing elder members who know just how to steer you or to where !
But everyones view is different . Im 6 weeks post-op and getting on ok , but at 48 wish desperately this hadn't happened to me . At one point I was offered surveillance and I would definitely have gone with that , but was then told the cancer was worse than at first suspected . I assume you had TRUS biopsies ?? Apparently you can have loads of cancer and all 10 needles miss it . So not that reliable . Personally I would say always go with the advice of the specialists because they really do want to help you. BUT , take some time making a decision. Download the toolkit from this site so you can understand virtually EVERYTHING that consultants and others discuss with you . If possible speak to Oncology aswell as Urology / surgery , as they offer different solutions generally with different side-effects . I hope this helps , but as I say others will reply who are far more educated . Best of Luck
Chris

User
Posted 28 Jul 2015 at 16:49

Hello clerkmore and welcome to the site.

I can understand your worrying that the cancer is increasing and realistically there is little anyone can say to stop you doing that.
Your consultant may well be right in that the original 1/10 was optimistic which would then make the increase less than it is currently appearing as.

I'm sure there will be other members who can be more informative regarding information on your scores.
However, while you wait for them have you though about downloading or applying for The Tool kit which is available through the publications section of this site.
They are a set of free, informative booklets regarding diagnosis, symptoms and treatments.
If nothing else they will help you make a list of questions to take with you when you next see a consultant.

You have to weigh up the worry of active surveillance and the possibility of an increase in spread or the possible life affecting results of radical treatment.

The more information you can glean the better. BUT try and stick to sites like this one or Cancer research rather than just surfing the web as not all information if relevant and can sometimes be un-necessarily scary.

Best wishes and I hope somebody else comes along soon.
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 28 Jul 2015 at 17:53

Hi Clerkmore,


Your consultant is right when he/ she says wait for the MRI results before making any decisions...

Biopsies can miss tumour(s) .... but if you have been given a Gleason score of 6 ( 3+3 ) on all biopsies including your most recent  it would suggest that there is no need to panic!

Your still relatively low PSA results also suggest that time is on your side.

PSA is not always a reliable indicator to the full extent of PCa as you may know...

If your biopsy has shown that your PCa is one of the more common prostate cancers ie. adenocarcinoma:  type microacinar... then it is arguably more predictable in it's behaviour and your consultant will be able to give you good advice as to which way is the best way for you to proceed at this stage..

Unfortunately I was not recommended as suitable  for AS when I was diagnosed, but would have seriously considered that option if it was deemed to be a realistic alternative to radical treatment.

Good luck with whatever path you choose to take at this stage

Luther


User
Posted 28 Jul 2015 at 18:21
Hi Clerkemore,

I am the wife of a man who was diagnosed on 3.8 PSA with Gleason 6, he has just had Da Vinci 2.5 weeks ago as he would not have been happy to go down the AS route but of course that is up to the individual. I would also suggest you download the toolkit and have some questions ready at your next appointment and see what the surgeon suggests. Your MRI could come back clear and they may suggest to keep checking PSA every three months. Good luck and hope all goes well.

Trish
User
Posted 28 Jul 2015 at 18:48

Hello, I am a female my partner is in a similar situation he was diagnosed in Dec 2103 gleason 6 low PSA, he has jumped from 6 to 7 PSA 1.4 we are on AS and are due back at the hospital in September MRI in November, it is so hard to understand what is going on other then to put your trust in the system :) We are not sure what we are doing as he has stuck his nut in the sand lol I am doing all the leg work but I love him to bits and know he is scared of what the future holds I understand what you are going through as there is no clear cut answer

User
Posted 28 Jul 2015 at 19:23

Thank you all very much for your replies. I should have said that I am 66 and was 65 when first diagnosed.

User
Posted 28 Jul 2015 at 19:47

hi clerkmore


yep you have some big decisions to make, you have done the right thing asking for help on here, have you had a chat with the specialist nurses they always give good advice, good luck with what YOU decide to do


nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 28 Jul 2015 at 22:44

I was originally diagnosed G6, but after a template biopsy, this was upgraded to G7. I could have had AS, but opted for da Vinci surgery. No regrets, but we are all different. Take all the advice you can, but ultimately, the decision is yours.

Good luck.

Paul

Stay Calm And Carry On.
 
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