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Diagnosed at 46yrs

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User
Posted 19 Jun 2023 at 14:46

Good day all,

 

Need some advise and guidance please.

i'm 46 and diagnosed on Thursday the 14th of June with prostate cancer.

Been told its a Gleason 6.

Not picked up by MRI that was done October last year or DRE.

Biopsy done in May this year picked it up following repeat PSA of 3.9.

i have a follow on appointment in about 3 months where i need to decide what next.

so currently on active survellance but i have been told i can opt for radiotherapy or surgery.

My main question is how certain am i that it hasn't spread as that may be a factor in what option i go for?

Do i request on another MRI or CT scan or bone scan etc?

thanks

User
Posted 19 Jun 2023 at 20:46

Just to balance things up a bit from what Steve86 says about being able to handle the side effects emotionally of RARP, please don’t think that going down the RT/HT route is a walk in the park emotionally. You’ve got possibly up to 3 years of the following:

Hot flushes
Aching and stiff joints
Total loss of Libido
Erectile Dysfunction
Possible long term urinary and bowel problems
Weight Gain
emotional issues
A long wait (up to2 years after RT until HT finishes) to know really how successful the RT has been.

Everyone is different but given the choice I know which one I would have opted for…RARP!

User
Posted 19 Jun 2023 at 15:24

Hi 

it’s a shock to get news like this as I am almost identical to you (see my post on the diagnosis thread) at 44yrs. 

i just wanted to say that I have been encouraged by all the responses, knowledge and insights given since I posted on Thursday and that the choice we have to make is hard and one that we must take time to reflect and understand everything we can to make a decision that we are most comfortable with. 

I hope that you can read many replies and gain much encouragement 

Carl

User
Posted 19 Jun 2023 at 15:30

Hi Bilmant,

Unfortunately, you can't ever be 100% certain that it hasn't spread but from the biopsy the consultant will be able to identify where in the prostate the cancer has been detected and whether any of the samples show any evidence of cancer close to the edge of the gland or any evidence of perineural invasion which can sometimes indicate a higher risk of spread.

I'm sure that if anything significant along these lines had been detected, your consultant would have told you but if you wanted to satisfy yourself further you could ask (or may already know):
- How many biopsy cores were taken?
- How many of the cores were positive for cancer?
- Where were the positive cores located?
- Was there any evidence of perineural invasion in any of the samples?
- Was there any evidence of cancer being detected close to the edge of the prostate or the fatty tissue surrounding the prostate?

Overall though, without knowing how many cores you had taken or how many were positive, on the face of it given your combination of Gleason 6, low PSA, and no visible lesions on the MRI, it would seem very likely that it's both early stage and contained within the gland.

Edited by member 19 Jun 2023 at 21:36  | Reason: Confusing language!

User
Posted 19 Jun 2023 at 16:11

If it is contained within the prostate then removal using RARP is likely to be the surgeon recommended way forward IF you can emotionally handle the side effects - both of which might be mild or extreme, long or short term (and no-one can tell you what you will experience as there are so many variables).
Erectile Disfunction may be something that you can handle emotionally along with your partner or it might be a deal breaker - we are all different.
Incontinence is also something that can have effects on your mental health or it might just be an inconvenience that you can handle for as long as needed.
Then there is the 'did it work' concerns that are more prevalent with Brachytherapy than RARP - would that affect you more than the side effects?
Unfortunately there is no clear answer and everyone has to decide what are the most important things in their lives.

Your diagnosis, based on your post, would indicate that it is all contained - but ask your surgeon for their advice based upon your reaction to the side effects of each procedure.

Edited by member 19 Jun 2023 at 16:12  | Reason: Not specified

User
Posted 26 Jun 2023 at 12:03

Originally Posted by: Online Community Member

If you don't mind me asking, how did you cope with the side effects of the prostatectomy?

How long before incontinence was no longer an issue etc?

Firstly can I say that I wish I had been diagnosed earlier as by the time they removed it, it had broken through the margins leaving me pT3a and looking forward (!) to salvage RT etc although post op PSA is <0.01.

Although your question wasn't addressed to me, I can add my 2c worth in :)

Apart from the first couple of weeks of discomfort that a couple of paracetamol fixed, the incontinence, although there, is only a mild inconvenience as long as I have relatively easy and quick access to a toilet. I feel the need to go and then have to make a conscious decision to hold it in. I can do that for about 5 minutes otherwise I get a small leak (5ml maybe). I am leak free at night. This is 6 weeks after RARP and it's getting better.
The ED will always be there for me as they could not save the nerves but I still achieve a very pleasurable orgasm, both with and without assistance. That may affect younger people more than it has me at 62.

User
Posted 27 Jun 2023 at 11:02

Incontinence wasn't a big issue at all.  Hardly used any pads at all.  Frequency was an issue.  I needed to do a pee a few times an hour for a while but I was in control.

User
Posted 27 Jun 2023 at 19:28

Hey Bilmant,

Just seeing your post mate. I was diagnosed 18 months ago, same as Ulsterman, Aged 46 T3a and 3+4.  My histology was, unlike Ulsters, similar once in a petri dish. No positive margins and as I await my 4th PSA test next month, I remain hopeful. No continence issues immediately and potency is around 80% having had 80% nerve sparing. Work in progress.

I just might not have cancer anymore. Result.

Decho has balanced this thread out perfectly. We all have but the same goal.

Oh and for what its worth. Ive read all of Ulstermans posts. My best friend is from Fermanagh. I thought he was a strong character. But Bejesus.... Yer mans the man.

Wishing you warmth mate and im sure whatever choice you make will be the right one.

Jamie.

Edited by member 27 Jun 2023 at 19:34  | Reason: Not specified

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User
Posted 19 Jun 2023 at 15:24

Hi 

it’s a shock to get news like this as I am almost identical to you (see my post on the diagnosis thread) at 44yrs. 

i just wanted to say that I have been encouraged by all the responses, knowledge and insights given since I posted on Thursday and that the choice we have to make is hard and one that we must take time to reflect and understand everything we can to make a decision that we are most comfortable with. 

I hope that you can read many replies and gain much encouragement 

Carl

User
Posted 19 Jun 2023 at 15:30

Hi Bilmant,

Unfortunately, you can't ever be 100% certain that it hasn't spread but from the biopsy the consultant will be able to identify where in the prostate the cancer has been detected and whether any of the samples show any evidence of cancer close to the edge of the gland or any evidence of perineural invasion which can sometimes indicate a higher risk of spread.

I'm sure that if anything significant along these lines had been detected, your consultant would have told you but if you wanted to satisfy yourself further you could ask (or may already know):
- How many biopsy cores were taken?
- How many of the cores were positive for cancer?
- Where were the positive cores located?
- Was there any evidence of perineural invasion in any of the samples?
- Was there any evidence of cancer being detected close to the edge of the prostate or the fatty tissue surrounding the prostate?

Overall though, without knowing how many cores you had taken or how many were positive, on the face of it given your combination of Gleason 6, low PSA, and no visible lesions on the MRI, it would seem very likely that it's both early stage and contained within the gland.

Edited by member 19 Jun 2023 at 21:36  | Reason: Confusing language!

User
Posted 19 Jun 2023 at 16:11

If it is contained within the prostate then removal using RARP is likely to be the surgeon recommended way forward IF you can emotionally handle the side effects - both of which might be mild or extreme, long or short term (and no-one can tell you what you will experience as there are so many variables).
Erectile Disfunction may be something that you can handle emotionally along with your partner or it might be a deal breaker - we are all different.
Incontinence is also something that can have effects on your mental health or it might just be an inconvenience that you can handle for as long as needed.
Then there is the 'did it work' concerns that are more prevalent with Brachytherapy than RARP - would that affect you more than the side effects?
Unfortunately there is no clear answer and everyone has to decide what are the most important things in their lives.

Your diagnosis, based on your post, would indicate that it is all contained - but ask your surgeon for their advice based upon your reaction to the side effects of each procedure.

Edited by member 19 Jun 2023 at 16:12  | Reason: Not specified

User
Posted 19 Jun 2023 at 20:46

Just to balance things up a bit from what Steve86 says about being able to handle the side effects emotionally of RARP, please don’t think that going down the RT/HT route is a walk in the park emotionally. You’ve got possibly up to 3 years of the following:

Hot flushes
Aching and stiff joints
Total loss of Libido
Erectile Dysfunction
Possible long term urinary and bowel problems
Weight Gain
emotional issues
A long wait (up to2 years after RT until HT finishes) to know really how successful the RT has been.

Everyone is different but given the choice I know which one I would have opted for…RARP!

User
Posted 21 Jun 2023 at 21:41
For a young man (in PCa terms), I also think that if radical intervention is recommended, rather than AS for awhile, it is most likely to be surgery that the option the MDT would be first choice..
Barry
User
Posted 22 Jun 2023 at 05:00

I was diagnosed at 46, too.

T3a and gleason 3+4.  Upgraded after prostatectomy to T3b and Gleason 4+5.

Had salvage RT and 18 months of hormone therapy-bicalutimide. 

PSA has been <0.006 for a long time now.

 

User
Posted 22 Jun 2023 at 11:44

With a Gleason 6 it is less aggressive I believe, so you may want to consider Focal therapy, ie just taking out the tumour. Long term efficacy not known but if it comes back in a few years then you can always get full RARP or who knows things may have progressed and new better treatments available.

its a potential stop gap so you don’t have to deal with the ‘heavier’ treatment.

User
Posted 26 Jun 2023 at 11:26

Hi Ulsterman,

If you don't mind me asking, how did you cope with the side effects of the prostatectomy?

How long before incontinence was no longer an issue etc?

User
Posted 26 Jun 2023 at 11:29

Hi CDB,

thanks for that.

Not sure about availability of focal therapy. Don't recall it been mentioned on the day.

But then again i don't remember much on the day.

I will ask.

Just out of curiosity, has anyone else had experience with this?

I have been told just 1 core out of the 12 cores on the left side was identified with cancer.

User
Posted 26 Jun 2023 at 12:03

Originally Posted by: Online Community Member

If you don't mind me asking, how did you cope with the side effects of the prostatectomy?

How long before incontinence was no longer an issue etc?

Firstly can I say that I wish I had been diagnosed earlier as by the time they removed it, it had broken through the margins leaving me pT3a and looking forward (!) to salvage RT etc although post op PSA is <0.01.

Although your question wasn't addressed to me, I can add my 2c worth in :)

Apart from the first couple of weeks of discomfort that a couple of paracetamol fixed, the incontinence, although there, is only a mild inconvenience as long as I have relatively easy and quick access to a toilet. I feel the need to go and then have to make a conscious decision to hold it in. I can do that for about 5 minutes otherwise I get a small leak (5ml maybe). I am leak free at night. This is 6 weeks after RARP and it's getting better.
The ED will always be there for me as they could not save the nerves but I still achieve a very pleasurable orgasm, both with and without assistance. That may affect younger people more than it has me at 62.

User
Posted 27 Jun 2023 at 11:02

Incontinence wasn't a big issue at all.  Hardly used any pads at all.  Frequency was an issue.  I needed to do a pee a few times an hour for a while but I was in control.

User
Posted 27 Jun 2023 at 19:28

Hey Bilmant,

Just seeing your post mate. I was diagnosed 18 months ago, same as Ulsterman, Aged 46 T3a and 3+4.  My histology was, unlike Ulsters, similar once in a petri dish. No positive margins and as I await my 4th PSA test next month, I remain hopeful. No continence issues immediately and potency is around 80% having had 80% nerve sparing. Work in progress.

I just might not have cancer anymore. Result.

Decho has balanced this thread out perfectly. We all have but the same goal.

Oh and for what its worth. Ive read all of Ulstermans posts. My best friend is from Fermanagh. I thought he was a strong character. But Bejesus.... Yer mans the man.

Wishing you warmth mate and im sure whatever choice you make will be the right one.

Jamie.

Edited by member 27 Jun 2023 at 19:34  | Reason: Not specified

 
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