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annual follow up relapse

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User
Posted 24 Feb 2023 at 05:39

Hi all

Looking for some experiences of salvage radiotherapy post RARP. I had the operation in March 2022. Went well and PSA every 3/12 <0.1.  However always in the back of my mind that recurrence was possible as tumour was opposed to bladder neck and the resection margins were not clear. So at my annual follow up yesterday I had the news that I had a biochemical relapse with now the MDT awaited. I'm trying to put a brave face on but inside I'm in bits. I spoke unofficially to a good friend up North who is a consultant clinical oncologist who reassured me and talked through the possible outcomes. I am most upset as I recovered so well and got to full continence/potency and now I'll have to go through it all again. The other thing is telling my wife, kids, family , colleagues etc. I was originally CPG1 and elected for radical prostatectomy as I'm 51. I am a medical professional and this is hard as it's easy to go down the rabbit hole of catastrophising. I suppose I'm looking for some morale support and shared experience. Thanks 

User
Posted 24 Feb 2023 at 10:12

I had a prostatectomy and had persistent PSA of 0.5 on my first check.  My pre op PSA was high but my post op histology was all clear so I was hopeful.  Getting that news was the worst day of this whole ordeal and I did not even bother to put a brave face on it.   But once I got a plan in place with my medical team who I trust I got my head back in the game and doubled down.  For me they went with early chemo - have done 5 out of 6 - plus will start 8 weeks radio after that and 3 years ADT plus abiraterone.  Obviously your plan will be different but it is designed to be doable and you still have a good chance of getting the monkey off your back.  

Best wishes.

User
Posted 24 Feb 2023 at 10:59
Like a sizeable proportion of others who had initial radical treatment, although RT in my case, I found biochemical relapse hard to take, even though I knew was a possibility. However, I know of a number of people in a similar situation to you Hatters, who have done well following salvage RT, more recently combined with other forms of treatment as experience has shown beneficial in some cases, so hope it works for you.
Barry
User
Posted 24 Feb 2023 at 17:19
John was 50 at diagnosis, had RP, recurrence 2 years later led to SRT. That was nearly 11 years ago - PSA stays on or around 0.1 and for the most part, PCa is just something that happened to us a long time ago.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Feb 2023 at 07:13
Really thank you all for the replies. Onwards and upwards.
 
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