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And breathe....

User
Posted 09 Sep 2018 at 10:06

Hi all

Just wanted to give an update on treatment outcomes. Having been diagnosed with Gleason 9 and post surgery report of having spread to a lymph node and positive margins, Iw asn’t feeling overly optimistic. Biclautamide (150mg) and plently of radiotherapy to prostate bed and lymph node area were duly applied, which completley flattened me. My body didn’t cope well!

So now I’m out the other side, and living with lasting side effects of mild incontinece (stress dribbles), lymphodema, diminished penis size, altered (slight loss) of libido, general intolerance of aclohol, slightly unprecitable bowel, and always having to pack pads anywhere I go for overnight stays. Fortunately, full erections have returned!

On the plus side, my PSA has remained at <0.003. The latest test was three months on from finishing the hormone therapy, and is still holding. To celebrate, I did an endurance event yesterday – 22 miles of hill walking and rockclimbing in the rain, to mark this stage of recovery.

I think I mainly want to thank all of you for the support (often unwittingly) you have given me through this site, to the PCUK nurses and even the medical people who have mutilated me. It has been a hard two years of treatment that I struggle to recommend to anyone! I would also like to let other Gleason 9 people know that there can be good outcomes (so far…).

Keep going everyone, we’re not alone.

Very best wishes for your journey

Graham

User
Posted 09 Sep 2018 at 21:26

Graham

our scores are so very similar and so is our treatment pathway.  I finished my salvage radiotherapy in June and will stay on bicalutimide until August 2019.  PSA is less than 0.006.  Dreading my next PSA test in October.

i’ve just Booked a cruise to Antarctica - it has long been an ambition of mine to get there and PCa isn’t going to stop me.

ulsterman

 

User
Posted 10 Sep 2018 at 08:05

That’s really good news Graham and what an excellent activity to do as a celebration.

Like you after salvage radiotherapy I am not fully continent and my bowel gives me some issues.

I will be having my last HT injection in October and then it will be squeaky but m time (in more than one way!) waiting to see how my PSA reacts.

To celebrate the end of radiotherapy last year I climbed Schiehallion with two of my son’s and a friend.

Ian

Ido4

User
Posted 10 Sep 2018 at 08:17
great result!
User
Posted 10 Sep 2018 at 09:25

Great that you have minimal side effects and that you are dealing with them . I was similiar diagnosis as you , Gleason 5+4, T3b NO PSA 26. I didn’t fully comprehend the seriousness I must admit at the time as I just heard ‘ I think we can cure you ‘. My wife on the other hand did understand and it hit her hard. It has since sunk in for me...

ive had the Brachy plus 23 Radiotherapy and HT Prostap since Feb. No side effects from either treatment but lots of mental issues from the Prostap - depression , insomnia and anxiety along with ED but only reduced libido. No man boobs, etc and I’ve lost nearly a stone . I’ve been told I might come off Prostap after 18 months- yippee. Now that will be worth a party 🍷

i have my 1st blood test after Radiotherapy today and see consultant next week. Fingers crossed...

i think the idea of a celebratory event is brilliant. I am training for a Tough Mudder early next year while still on the Prostap so we’ll see how I get on ....

I am trying to be confident about the future. And you guys on here really help.

Best of luck to everyone and reiterate what Graham says about all the staff , from Urology to the Radiotherapy department, and support staff, they are fantastic.

it is certainly not a journey that I would recommend , but I am learning a lot about myself .

Phil

 
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