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User
Posted 10 Dec 2014 at 18:06

Hi all, I am 48 years old fit and active. I have just received a diagnosis 2 weeks ago. I have a gleason scale of 6 but have been told there was a lot of cancer cells in the 12 biopsies taken. Subsequently i have been told I will have to face treatment as it cannot be left. I had my MRI scan last week. Our meeting with the surgeon and nurse is scheduled for xmas eve...........I am totally ignorant and unsure of what my options and choices are or will be. Just looking for some advice from you guys. Thanks

User
Posted 10 Dec 2014 at 22:47

Hi Stewmac and welcome to the forum though sorry for the reason that brings you here. No doubt at your next appointment on Christmas Eve various treatment options that are open to you will be discussed. However, you may not be given a firm recommendation. In the circumstances, I suggest you prepare by researching various treatment options and potential side effects of these. A good place to start would be to study the 'Tool Kit' on the main part of the Charity. When you have done your research, you will be in a better position to raise any questions you may have at your appointment. Hopefully, your cancer is contained within the capsule which will give you the best chance of cure, particularly if the Prostate is removed, which risks more severe side effects as primary treatment backed up by RT and possibly HT in need. This is the route that statistically most young men like yourself follow where appropriate but some opt for some form of radiation of other treatments such as HIFU as a primary treatment instead.

Barry
User
Posted 11 Dec 2014 at 08:19

Hello Stewmac and welcome.


Good advice from Barry regarding the Tool Kit. Get it under the Publications section on this site.


The other advice I would give for Christmas Eve is to take somebody with you (you aren't going to take it all in at once), have a list of questions written down from info that you have gleaned from the tool kit, and a notepad and pen on which to write the basics of the replies. Don't worry that it will look odd, many of us have done it.


Try not to be rushed into a treatment without sussing out ALL that is available to you

Good luck and fingers crossed.


Lots of helpful people on here,


Whatever path you choose to go down, somebody on here will have trodden it before you.


Keep posting and asking for advice and support and it will come


All the best
Sandra

Edited by member 11 Dec 2014 at 08:35  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 11 Dec 2014 at 10:35

I would guess we were all pretty much ignorant of the disease and treatments available at the beginning when we were diagnosed too. You simply have to learn all you can by reading as much as possible and asking questions if there is something you don't understand. When you have all of the test results you (and your doctor) will be in a much better position to decide a way forward and the best method of treatment for you.

 

In essence there are two camps. One is surgery; to have the prostate and therefore the tumour(s) removed. The other is the use of strong radio beams to kill the tumour(s). Each has advantages and disadvantages. There are a small number of other procedures depending upon whether you are suitable or not as you will come to understand. You may receive advice but no one will tell you to choose one method or another. This will be something you will have to decide for yourself depending upon what and how you feel.

 

Whatever, we have all experienced what you are experiencing now and can give you advice and encouragement so don't despair. Prostate cancer is very treatable and can be completely cured in many cases.

 

Good luck. I hope everything goes well and your final diagnosis is favourable.

 

Steve 

 

 

Edited by member 11 Dec 2014 at 10:38  | Reason: Not specified

User
Posted 11 Dec 2014 at 17:42

 

Welcome aboard but sorry you had to join us.

 

Best advice is to take one step at a time.

Once your scan results are checked then you will likely find the next step will make more sense for your particular case. O.K. this may spoil your Christmas break a bit but there will be plenty more of those to come.

You have received good points here already so I won't repeat. But just to add; do you have any history of Prostate or Breast cancer in your relatives ?  If so, do mention it to all the medical people you have consultations with.

 

User
Posted 11 Dec 2014 at 19:47

Hi Stewmac,

Sound and sensible advice given by venerable members.

Bottom line advice from me is to learn as much as you can before committing to an action plan relevant and appropriate to your treatment needs.

I would recommend this book ' Guide to surviving prostate cancer' by P Walsh (world famous authority on Pca) and J Farrar Worthington written from a US perspective but nonetheless relevant. It claims to 'give yourself a second opinion'. You can get a used copy from Amazon for £3.

Regards,
Jacey

User
Posted 11 Dec 2014 at 22:13

Originally Posted by: Online Community Member

Thanks all, its the uncertainty that is the stressful part, as i'm sure you've all unfortunately been through.
It is in my genetics unfortunately as both my father and grandfather had varying degrees of prostate cancer. I suppose the date with my doctors will determine a lot for me. My wife will be attending with me and she's been reading a lot about the disease, up until this point i've been burying my head a bit.
A heartfelt thanks to you all for the advice and i'm going to be a bit more pro-active and read and research more on the disease.

 

Some times google can be your friend and others not quite,excellent advice about the tool kit,one thing I'd also suggest is if you click on peoples names you will be able to access their profiles,some have written extensive profiles on varying treatments if this is the path you may have to go down.Wait until all your results are in and take it from there,not easy but as you say we've all been there.

User
Posted 12 Dec 2014 at 13:13

Stewmac

 

Good advice as usual from the members on here, next week is the first anniversary of my diagnosis, a lot of similar stats to you apart from age, see my profile.

My father also died of metastatic PCa aged eighty something , but older brother is clear. We are all different but 12 months on PSA is at 0.03, Continence is still okay despite a couple of bladder neck stretches. I was also inspired by a couple of men at our local support group who were five and seven years on from prostate removal and have had no other treatment post op and PSA of 0.03.

Hope all goes well.

Thanks Chris

 

 

 

 

User
Posted 12 Dec 2014 at 14:59
Hi Stewmac,

My husband was diagnosed with PC at the beginning of this year. His Gleason score was 6 and his PSA at diagnosis was 1.12.

He opted for the op, which he had at UCH in London on 21st March.

All looks good at the moment but my fear is for my son who's just turned 40. I've told him he needs to keep a check on things but at the same time I don't want to worry him unduly.

User
Posted 12 Dec 2014 at 22:39
Hi Stewmac,

We seem to be on a similar road. I was diagnosed a couple of weeks ago. Gleason 3+3 and 3+4 PSA 7.1.

Today I have been told the MRI and bone scan were fine and the cancer is contained within the prostate. I am waiting now for an appointment with the surgeon and oncologist. Waiting for the results of the scans has been really anxiety provoking and it now feels as though I have jumped one hurdle and now head towards the next. I wish you all the best and hope you get great advice off here as I do.

THE CHILD HAS GROWN, THE DREAM HAS GONE
Show Most Thanked Posts
User
Posted 10 Dec 2014 at 22:47

Hi Stewmac and welcome to the forum though sorry for the reason that brings you here. No doubt at your next appointment on Christmas Eve various treatment options that are open to you will be discussed. However, you may not be given a firm recommendation. In the circumstances, I suggest you prepare by researching various treatment options and potential side effects of these. A good place to start would be to study the 'Tool Kit' on the main part of the Charity. When you have done your research, you will be in a better position to raise any questions you may have at your appointment. Hopefully, your cancer is contained within the capsule which will give you the best chance of cure, particularly if the Prostate is removed, which risks more severe side effects as primary treatment backed up by RT and possibly HT in need. This is the route that statistically most young men like yourself follow where appropriate but some opt for some form of radiation of other treatments such as HIFU as a primary treatment instead.

Barry
User
Posted 11 Dec 2014 at 08:19

Hello Stewmac and welcome.


Good advice from Barry regarding the Tool Kit. Get it under the Publications section on this site.


The other advice I would give for Christmas Eve is to take somebody with you (you aren't going to take it all in at once), have a list of questions written down from info that you have gleaned from the tool kit, and a notepad and pen on which to write the basics of the replies. Don't worry that it will look odd, many of us have done it.


Try not to be rushed into a treatment without sussing out ALL that is available to you

Good luck and fingers crossed.


Lots of helpful people on here,


Whatever path you choose to go down, somebody on here will have trodden it before you.


Keep posting and asking for advice and support and it will come


All the best
Sandra

Edited by member 11 Dec 2014 at 08:35  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 11 Dec 2014 at 10:35

I would guess we were all pretty much ignorant of the disease and treatments available at the beginning when we were diagnosed too. You simply have to learn all you can by reading as much as possible and asking questions if there is something you don't understand. When you have all of the test results you (and your doctor) will be in a much better position to decide a way forward and the best method of treatment for you.

 

In essence there are two camps. One is surgery; to have the prostate and therefore the tumour(s) removed. The other is the use of strong radio beams to kill the tumour(s). Each has advantages and disadvantages. There are a small number of other procedures depending upon whether you are suitable or not as you will come to understand. You may receive advice but no one will tell you to choose one method or another. This will be something you will have to decide for yourself depending upon what and how you feel.

 

Whatever, we have all experienced what you are experiencing now and can give you advice and encouragement so don't despair. Prostate cancer is very treatable and can be completely cured in many cases.

 

Good luck. I hope everything goes well and your final diagnosis is favourable.

 

Steve 

 

 

Edited by member 11 Dec 2014 at 10:38  | Reason: Not specified

User
Posted 11 Dec 2014 at 17:42

 

Welcome aboard but sorry you had to join us.

 

Best advice is to take one step at a time.

Once your scan results are checked then you will likely find the next step will make more sense for your particular case. O.K. this may spoil your Christmas break a bit but there will be plenty more of those to come.

You have received good points here already so I won't repeat. But just to add; do you have any history of Prostate or Breast cancer in your relatives ?  If so, do mention it to all the medical people you have consultations with.

 

User
Posted 11 Dec 2014 at 19:47

Hi Stewmac,

Sound and sensible advice given by venerable members.

Bottom line advice from me is to learn as much as you can before committing to an action plan relevant and appropriate to your treatment needs.

I would recommend this book ' Guide to surviving prostate cancer' by P Walsh (world famous authority on Pca) and J Farrar Worthington written from a US perspective but nonetheless relevant. It claims to 'give yourself a second opinion'. You can get a used copy from Amazon for £3.

Regards,
Jacey

User
Posted 11 Dec 2014 at 21:05

Thanks all, its the uncertainty that is the stressful part, as i'm sure you've all unfortunately been through.
It is in my genetics unfortunately as both my father and grandfather had varying degrees of prostate cancer. I suppose the date with my doctors will determine a lot for me. My wife will be attending with me and she's been reading a lot about the disease, up until this point i've been burying my head a bit.
A heartfelt thanks to you all for the advice and i'm going to be a bit more pro-active and read and research more on the disease.

User
Posted 11 Dec 2014 at 22:13

Originally Posted by: Online Community Member

Thanks all, its the uncertainty that is the stressful part, as i'm sure you've all unfortunately been through.
It is in my genetics unfortunately as both my father and grandfather had varying degrees of prostate cancer. I suppose the date with my doctors will determine a lot for me. My wife will be attending with me and she's been reading a lot about the disease, up until this point i've been burying my head a bit.
A heartfelt thanks to you all for the advice and i'm going to be a bit more pro-active and read and research more on the disease.

 

Some times google can be your friend and others not quite,excellent advice about the tool kit,one thing I'd also suggest is if you click on peoples names you will be able to access their profiles,some have written extensive profiles on varying treatments if this is the path you may have to go down.Wait until all your results are in and take it from there,not easy but as you say we've all been there.

User
Posted 12 Dec 2014 at 13:13

Stewmac

 

Good advice as usual from the members on here, next week is the first anniversary of my diagnosis, a lot of similar stats to you apart from age, see my profile.

My father also died of metastatic PCa aged eighty something , but older brother is clear. We are all different but 12 months on PSA is at 0.03, Continence is still okay despite a couple of bladder neck stretches. I was also inspired by a couple of men at our local support group who were five and seven years on from prostate removal and have had no other treatment post op and PSA of 0.03.

Hope all goes well.

Thanks Chris

 

 

 

 

User
Posted 12 Dec 2014 at 14:59
Hi Stewmac,

My husband was diagnosed with PC at the beginning of this year. His Gleason score was 6 and his PSA at diagnosis was 1.12.

He opted for the op, which he had at UCH in London on 21st March.

All looks good at the moment but my fear is for my son who's just turned 40. I've told him he needs to keep a check on things but at the same time I don't want to worry him unduly.

User
Posted 12 Dec 2014 at 22:39
Hi Stewmac,

We seem to be on a similar road. I was diagnosed a couple of weeks ago. Gleason 3+3 and 3+4 PSA 7.1.

Today I have been told the MRI and bone scan were fine and the cancer is contained within the prostate. I am waiting now for an appointment with the surgeon and oncologist. Waiting for the results of the scans has been really anxiety provoking and it now feels as though I have jumped one hurdle and now head towards the next. I wish you all the best and hope you get great advice off here as I do.

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 11 Mar 2015 at 23:20

Hi all thanks for all your messages, spoken to surgeon and now waiting for a date for keyhole nerve sparing. The wait is murder though.just trying to keep myself fit' and well until I get word.

User
Posted 11 Mar 2015 at 23:41

Try not to worry. Events will take care of themselves. Meanwhile, relax, enjoy life, knowing that you are in the cure camp. You should be doing your pf exercises. I would start asking questions of your centre now about free pads on prescription if you are incontinent, and how ED is treated and who is responsible for organising treatments and prescriptions.

11 months on, I am on 1 pad per day and Sildenafil is beginning to work. Be patient in your recovery. All the best for your op.

Paul

Stay Calm And Carry On.
User
Posted 11 Mar 2015 at 23:55

Good luck stewmac . Hope you don't have to wait too long. It is certainly a relief when the whole thing can be done and dusted and you can get on with life. In saying this I am mindful of all those in the control rather than cure camp and pass my good wishes that their resilience to deal with ongoing uncertainty remains strong.. Georgina from Oz

User
Posted 12 Mar 2015 at 07:48
Hi Stewmac

waiting is always hard but once the surgery is done you will be into a second phase, recovery.

This can take a fairly long time and of course there are the regular PSA tests and waiting for the results of those. So waiting will become a very familiar thing and part of your new normal.

A lot of men on this forum talk about how they deal with their recovery post Op and how they manage the issues of regaining both continence and erectile function. Having a very loving supportive wife or partner really helps so the more your wife can read up and absorb the better.

2 years ago I could never have imagined I would be chatting openly with almost total strangers about ED and the medical and physical things that can be done. I had no knowledge at all of incontinence of either type this forum really does open up the conversation and you can ask anything someone will almost always come back with some friendly and practical advice.

I wish you all the very best

xx

Mo

User
Posted 12 Mar 2015 at 08:57

Good luck Stewmac from me too.

Nerve sparing will be a big bonus later on.

Don't expect too much of yourself following the op. Listen to your body, even though it's keyhole surgery your body is still taking a bashing.

Have patience with yourself. I'm sure your wife is already aware that she too will need the patience of a saint!!

You already know you can ask any question about anything on here and you'll get an honest answer.

All the best
Sandra

We can't control the winds - but we can adjust our sails
 
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