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Three years on

User
Posted 28 October 2016 12:04:57(UTC)
As the title suggests it's three years since diagnosis . I went to have my yearly visit with my consultant on Monday, my PSA is rock bottom at 0.01 and all is well . Here is the but . I knew it would be suggested I come off H T treatment so no surprise there then (could have stayed on if I wanted) What did surprise me she said that the prostap had been keeping everything under control and now it's time to see if the RADIO THERAPY has worked .I was under the impression that the RTwas doing its job ,and HT was the belt and braises to the RT but it seems not. So we carry on having the PSA CHECK every six months and watch the PSA rise and hope it stops somewhere round 3/4 , and here's me thinking I am on the home run . Not wanting to sound ungrateful , but that did bite me in the bum , and it feels as if we are starting again . Hey ho (carry on carrying on ) Stewart.
User
Posted 29 October 2016 14:19:44(UTC)

Hi Stewart

My planned 3 years of HT finished up at 47 months for no reason (that I know of) other than the consultant wanted me to have as much as he could ring out of the system then. Would I have done as well as I have (see my profile) on 36 months is perhaps unanswerable. My refferal point at present is 2 but the GP, whom I opted to be monitored by, seems more interested in how I feel than numbers.

Ray


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User
Posted 29 October 2016 07:59:32(UTC)

Hi Stewart, i too have had RT and am still on HT until Feb next year, with the oncologist suggesting that I will be on it for longer as the new thinking is to stay on HT as long as possible.

I can see where you are coming from about no knowing but I was told at the very beginning that HT and RT would " hopefully " get rid of the PCa but Zapping it and getting the PSA down is the main target. Supposedly after finishing HT it gradually fades in your body for as long as you were on it (according to some on this site) and then there is a chance that if there is the slightest, smallest cell left it starts to increase in size as there is nothing to stop it feeding off the testosterone that should be starting to produce naturally in your body. This is when the PSA will start to rise and put you back where you started but you will not be able to have RT again.

Like you my PSA went down to .000001 and is officially undetectable but I am under no illusions as to not being "cured" and will be waiting to see what happens. I will deal with it as and when it occurs(if it does). There are dozens of other things that could take me before then.

My advice to you is stay positive and see what happens, live your life as normal and cherish the fact that you are alive and able to do what you want to, there are so many people that cannot that.

Best wishes for the future, Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 29 October 2016 08:33:59(UTC)

Hi I had the op followed by RT. Not had any HT yet.
As I understood it the RT will hopefully have seen off the PCa. When you come off HT after the RT the healthy Prostate cells will probably regenerate and produce PSA. So any rise in PSA would be normal and not necessarily associated with PCa

Bri

User
Posted 29 October 2016 10:03:04(UTC)

Hi Stewart,

I'm about a year behind you; saw my oncologist the other day and was discharged back to GP, to continue with HT (another year) plus regular PSA.

I'd been better briefed at the start than you appear to have been, but it was still a bit of a bump!

I was also reminded of possible late effects of RT (urethral stricture, rectal bleeding), as well as the possible biochemical 'bounce'. Can't say it made my day!

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
User
Posted 29 October 2016 10:33:08(UTC)
Hi Stewart,

I started HT (Prostap) in January 2013 and had my last injection November 2015. I had RT from October 2013, finishing in December 2013. When I saw the oncologist in January 2016 she said not to continue with the HT and they would check my PSA every 4 months (prior to that I had been on 6 monthly appointments). In May and August my PSA was 0.01, next appointment is in December, she said she would only be concerned about the number if it went over 2.

Arthur
User
Posted 29 October 2016 14:19:44(UTC)

Hi Stewart

My planned 3 years of HT finished up at 47 months for no reason (that I know of) other than the consultant wanted me to have as much as he could ring out of the system then. Would I have done as well as I have (see my profile) on 36 months is perhaps unanswerable. My refferal point at present is 2 but the GP, whom I opted to be monitored by, seems more interested in how I feel than numbers.

Ray


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User
Posted 30 October 2016 08:01:36(UTC)

Ray - looks like you got lucky with both the GP and the oncologist!

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
User
Posted 30 October 2016 08:13:19(UTC)

Well I had Prostap for just 6 months - from 3 months before RT. When I had my six week check up after RT she insisted that I stopped the HT as it was only ever intended to be six months in my situation. At my six month check up earlier in the month my PSA had risen to 1.2 and I am to have another test and appointment at the beginning of December and they will decide whether to do more tests. It seems clinics have different policies on this and I would have preferred they had continued the HT as it seems other clinics do.

 

User
Posted 30 October 2016 12:25:47(UTC)

Andrew, very lucky but that's GP and Uro. Uro pushed for the best he could get - if treatment doesn't work as well as hoped I want to look in yours eyes and say I did my best. Can't ask for more than that.

Ray

User
Posted 01 November 2016 07:41:47(UTC)
Hi all and thanks for putting your thoughts in writing. I think it's a bit unsettling that we don't all get the same treatment regardless of whereabouts we live. Whilst I accept that we are all different . I would have thought that as there are so many of us , statistical information would have been gathered , and groups of people who are at the same stage and degree of of severity would get the same treatment. I know that there are different types PC (tigers puss cats etc ) but as said we should be able to be put in to groups and given the same treatment. It seems from the comments on here ,even the basics are dependent on ,what the particular group of people who decide on your treatment .GOES. I don't want to slag off the NHS for one minute ,they are I think , doing a very difficult job with ever reducing funds . But as a retired engineer we couldn't have possibly done our job without some standard form to work to , otherwise nothing would have fitted when it came to assembly. What do we think ? If I need three years of HT then those with the same symptoms and stage need the same .Iwould hope someone on here can tell me why not. Thanks again for all your thoughts Stewart .
User
Posted 01 November 2016 11:06:55(UTC)
I was just reading this out of curiosity really. I've always wondered why my OH wasn't offered hormone therapy. He had brachytherapy and it seems many men don't have hormone therapy with brachytherapy. Which is fine. But he also considered having the beam radiotherapy instead of brachy. He was told no hormones needed if he had that either. I've often wondered why. All you guys seem to have hormones as well. Maybe it's because his Gleason was 3+3? i suppose I'll never know.
User
Posted 01 November 2016 17:12:56(UTC)

Stewart
Part of the answer (different treatment for the same PCa level etc) is still learning on what is the best path to follow. Some consultants tend to stick to the tried and tested whilst others try out new ideas.

sjtb,
The 3+3, hence low grade, is the most likely reason. You have the advantage its there in reserve if needed. Bear in mind HT effectiveness is time limited. For some guys that's well above the thought norm of 3 years yet others get nowhere near that.

Ray

 
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