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Decision time help

User
Posted 14 Sep 2022 at 00:57

Hi all.


I have recently been diagnosed with stage 2 PC and will have treatment starting sometime in the next few months. But what option to take? This is the question that many of you out there will have wrestled with.


I'm over-researched and overloaded with facts about treatment options. The 2 options available to me are RT (with HT) and RARP. I've been able to talk with 2 friends who've had RT and this has been really helpful.


What I would value most at this point is the opportunity to hear the stories of men who have already gone down the surgical road with RARP. Ideally I'd love the opportunity to have a conversation with an individual willing to chat with me.


Any pointers or takers out there?


Best wishes to fellow travellers.

User
Posted 14 Sep 2022 at 13:32

Hi,


I had surgery last November, and latest PSA is 0.04. Yes there are issues over ED and incontinence, which has now improved again, post Covid infection. Happy to talk.


I was diagnosed T2a, Gleason 7, upgraded to T2c post surgery, with negative margins thankfully. 


P.

Edited by member 14 Sep 2022 at 13:34  | Reason: Additions

User
Posted 14 Sep 2022 at 13:44

I assume by 'Therapy' you mean Radiotherapy (RT) of one of the several types, although for a few men who are suitable 'Focal Therapy' can be an option. Men can react quite differently to various forms of treatment so you should be aware that your experience might be quite different to anybody who may relate theirs. My advice would be to download or get a hard copy of the 'Tool Kit' from this charity as here - https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

Edited by moderator 15 Sep 2022 at 12:37  | Reason: Consolidating two threads

Barry
User
Posted 14 Sep 2022 at 15:05
If you call PCUK on the number above, they can put you in touch with men who have already been down this road and will be happy to talk to you. Going to PCUK and speaking to one of their volunteer mentors is more reliable than getting in touch with random men through the message board
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Sep 2022 at 15:26

Hi Barry


I was acting on your suggestion that I start my own thread on this!


Now you suggest I 'consolidate'.  Perhaps a little 'how to' would be helpful...


I'm new to this and haven't yet got the hang of how the conversations work tecnically.


Cheers


Steven

User
Posted 14 Sep 2022 at 15:29

Thanks Lynne


I checked on the website for 'suuport' but the nearest is south of Cambridge in Shelford.  When I put in my Peterborough location it came up with nothing locally.


But I'll call the nunber and see if I turn up anything there.


Thanks again.

User
Posted 15 Sep 2022 at 17:01

I responded to your previous message on another persons thread and mentioned that I had surgery last December at Addenbrookes. Happy to chat if you think that will be useful for you


 


Ivan

User
Posted 15 Sep 2022 at 20:10

Originally Posted by: Online Community Member


Thanks Lynne


I checked on the website for 'suuport' but the nearest is south of Cambridge in Shelford.  When I put in my Peterborough location it came up with nothing locally.


But I'll call the nunber and see if I turn up anything there.


Thanks again.



Being put in touch with other men to talk to is a separate thing to the support groups. PCUK has a network of men who have had different kinds of treatment who are happy to talk to a newly diagnosed man. John spoke to two when he was first diagnosed - a man who had RP and a man who had brachy 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Sep 2022 at 08:32

Happy to chat anytime as did the same which helped loads when first diagnosed back in September 2019. Please also check my thread.


This space helped me find my high volume pioneering surgeon and I feel most fortunate as so far outcome has exceeded expectations.


Also recommend checking in with a local support group as it adds to the mix during what is a very mind blowing time.


cheers


Simon

User
Posted 16 Sep 2022 at 15:15

Originally Posted by: Online Community Member


Hi Barry


I was acting on your suggestion that I start my own thread on this!


Now you suggest I 'consolidate'.  Perhaps a little 'how to' would be helpful...


I'm new to this and haven't yet got the hang of how the conversations work tecnically.


Cheers


Steven



Hi Steven,


You could have just copied and pasted the information from one thread onto the other and then used the Green  delete button to cancel the shorter one.  In the event the moderators PM'd me to say they have done this for you.  Of course, if there are different things you wish to raise it is usual to start new threads (or as the forum moderators like to call them, conversations).  But where the subject is essentially the same or a follow on, it is helpful to those who respond not to have to jump between threads.  Many of us also show the salient points of our diagnosis and progress under our Profile/Bio.,.  This again helps members make easy reference when replying rather than going through old threads which tend to be lost over time.  

Barry
User
Posted 16 Sep 2022 at 23:32

Barry , I contacted Carol at PCUk and asked if she could help Blackbird with your suggestion to consolidate the posts. 


Thanks Chris.

Edited by member 16 Sep 2022 at 23:39  | Reason: Not specified

User
Posted 17 Sep 2022 at 02:25
Yes, it was Carol who PM'd me Chris.
Barry
 
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