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I have just been diagnosed

User
Posted 18 Jul 2022 at 21:23

Hi, after a couple of months of testing, i was diagnosed on the first of July with early stage prostate cancer.  

  I am going on Thursday to speak to an oncologist to get the information regarding radiotherapy and then in a few weeks to speak to a surgeon regarding removal surgery. I am currently leaning towards surgery based on what I have read online. 

  Any tips or questions that I should ask would be appreciated. 

  Thanks David. 

User
Posted 20 Jul 2022 at 14:40

Hi David,  I noted you've looked at the options so here is my experience although it got a bit rambling maybe.

As you may have read specialists often prefer their own type of treatment so if a radiologist recommends surgery it might be a strikingly honest opinion.

As others have said Gleason 6 is regarded as mild and one oncologist I watched on YouTube ummed and ahhed about it being 'cancer' at all.  He thought Active Surveillance would be a preferred option unless there are other factors which I assumed meant it was in a risky position.

I only considered surgery as they said it was close to the edge and I wanted it out before it grew, it being a 4+3 from the biopsy (4+4 post surgery).  I liked the idea of going to sleep and waking up with it done and just a healing process to complete.  That's how it was although I have significant ED, but not complete.  At the time radiotherapy and hormones sounded too long winded and at the time to me contained many risky uncertainties.  Such as longer term radiotherapy effects and that hormones have unknown side effects changing how you think which I feared meant I wouldn't be me.   Although nowadays, just 6yrs later, RT has improved precision.   

I've found that 6yrs since the op have made me a bit more philosophical and knowledgeable about it, it looks like it's coming back.   I also dont know if it's better to have a mind that thinks about sex but can't do a lot about it physically or a mind that doesn't think about sex and has no inclination to want to do anything about it.  I prefer the former I think although the latter may be temporary so better in that case.

I've no regrets and it's rare to hear from anyone who regrets their choice.  Usually there isn't a lot of difference in outcome although they say a younger man might have surgery as he can come back and have RT later if necessary.  Someone with high gleason and suspect spread will likely do better with RT as they can aim outside the prostate.

You might ask the oncologist about Brachytherapy as well as beam radiotherapy.  I don't know a lot about either.  Although I hope Active Surveillance is enough.  With my current knowledge I'd take that if I thought it was safe.  You can always ask for treatment if you start to worry.

I hope that helps.  Regards Peter

User
Posted 20 Jul 2022 at 17:19

When I was diagnosed I really didn't want any treatment unless I had to and was on active surveillance for 2 years. That works well providing it is closely monitored. In the end when things progressed to Stage 2 I opted for surgery. It took a little while to fully recover from that but very little in the way of dide effects. I'd be wanting to know exactly where in the prostate the tumour is (whether surgery would be nerve sparing)  and think very carefully about the options you have 

User
Posted 20 Jul 2022 at 21:28
Prostate cancer is a slow growing disease. As such it is perfect for active surveillance. Regular ( 3 /6 monthly) checks will give you the time to make an informed decision. Whilst I can appreciate your desire to "do something" now that might not be the best decision in the long run.

In the end though, its your body and your decision, good or bad.

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User
Posted 18 Jul 2022 at 22:00

Hello David,

Sorry you're here. It help for us to make suggestions if you fill in your diagnosis in your profile. Things like staging, initial PSA, and gleason score. I might suggest you investigate some things, but without knowing your diagnosis, it's difficult to know where to start.

User
Posted 19 Jul 2022 at 04:40

Cancer contained within prostate, initial psa 9, 6 on the Gleason scale. 

I have had a look at the possible treatment routes,  was just interested in others opinions. 

Edited by member 19 Jul 2022 at 04:42  | Reason: Added more info

User
Posted 19 Jul 2022 at 08:15

Has anyone mentioned Active Surveillance. Gleason 6 is usually quite low risk.

Dave

User
Posted 19 Jul 2022 at 08:53

Ask about other options. Brachy and Focal were both offered at my NHS trust. 

User
Posted 19 Jul 2022 at 20:58

I haven't spoken to anyone about my options yet, going on Thursday to speak to radiotherapy.  I was just looking for some guidance on how others went and for some general advice. 

User
Posted 20 Jul 2022 at 14:40

Hi David,  I noted you've looked at the options so here is my experience although it got a bit rambling maybe.

As you may have read specialists often prefer their own type of treatment so if a radiologist recommends surgery it might be a strikingly honest opinion.

As others have said Gleason 6 is regarded as mild and one oncologist I watched on YouTube ummed and ahhed about it being 'cancer' at all.  He thought Active Surveillance would be a preferred option unless there are other factors which I assumed meant it was in a risky position.

I only considered surgery as they said it was close to the edge and I wanted it out before it grew, it being a 4+3 from the biopsy (4+4 post surgery).  I liked the idea of going to sleep and waking up with it done and just a healing process to complete.  That's how it was although I have significant ED, but not complete.  At the time radiotherapy and hormones sounded too long winded and at the time to me contained many risky uncertainties.  Such as longer term radiotherapy effects and that hormones have unknown side effects changing how you think which I feared meant I wouldn't be me.   Although nowadays, just 6yrs later, RT has improved precision.   

I've found that 6yrs since the op have made me a bit more philosophical and knowledgeable about it, it looks like it's coming back.   I also dont know if it's better to have a mind that thinks about sex but can't do a lot about it physically or a mind that doesn't think about sex and has no inclination to want to do anything about it.  I prefer the former I think although the latter may be temporary so better in that case.

I've no regrets and it's rare to hear from anyone who regrets their choice.  Usually there isn't a lot of difference in outcome although they say a younger man might have surgery as he can come back and have RT later if necessary.  Someone with high gleason and suspect spread will likely do better with RT as they can aim outside the prostate.

You might ask the oncologist about Brachytherapy as well as beam radiotherapy.  I don't know a lot about either.  Although I hope Active Surveillance is enough.  With my current knowledge I'd take that if I thought it was safe.  You can always ask for treatment if you start to worry.

I hope that helps.  Regards Peter

User
Posted 20 Jul 2022 at 17:19

When I was diagnosed I really didn't want any treatment unless I had to and was on active surveillance for 2 years. That works well providing it is closely monitored. In the end when things progressed to Stage 2 I opted for surgery. It took a little while to fully recover from that but very little in the way of dide effects. I'd be wanting to know exactly where in the prostate the tumour is (whether surgery would be nerve sparing)  and think very carefully about the options you have 

User
Posted 20 Jul 2022 at 20:48

Thanks for your input,  i will take what you have said into the meetings i have with the medical staff.  I don't really want to go down the wait and watch route,  my wife has lost 2 close family members in the last few years to cancer,  both too far gone for treatment when diagnosed. I don't think she could live with the stress going down that road. 

User
Posted 20 Jul 2022 at 21:28
Prostate cancer is a slow growing disease. As such it is perfect for active surveillance. Regular ( 3 /6 monthly) checks will give you the time to make an informed decision. Whilst I can appreciate your desire to "do something" now that might not be the best decision in the long run.

In the end though, its your body and your decision, good or bad.

 
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