End of active treatment

User

Posted 13 Nov 2019 at 23:31

hi all,

I first came here in March 2018 after having a PSA of 38 and being diagnosed as Gleason 4:5

I have been on hormone therapy Since April 2018, had 20 fractions of radiotherapy in August 2018 and received my last triptorelin HT injection in July 2019. At my review in July my PSA was less than 0.1 or, as the nurse called it undetectable. I have now been off the hormone therapy for a little over two weeks and my last review 10 days ago my PSA was still 0.1

My oncologist agreed that taking into account how well I had responded to the hormone and RT therapy and my low PSA level she agreed I could stop my therapy at the 18 month point.

I had read in lots of US medical journals that the way of thinking now is taking into account quality of life and low comparable risk of stopping hormone therapy at 18 months instead of three years, 18 months could soon become the standard.

Even looking at this logically I know my next PSA check and review in March 2020 is going to be a pivotal moment in my recovery from prostate cancer. I have been told that if my PSA in March is above 2.0 there may have to be a reassessment of my treatment.

If it’s under 2.0 then they will just keep me under observation at my four monthly PSA checks for the next couple of years.

I just thought I would update everyone That despite being in the Gleason nine club there can be light at the end of the tunnel. Having had 20 full strength fractions of radiotherapy I also have minimal side-effects and I am well aware that I have been lucky in this case as well, but I also owe a lot to the Bristol haematology and oncology Centre for their excellent care and treatment .

I wish everyone on this forum all the best with the treatment at whatever stage you are

User

Posted 13 Nov 2019 at 23:31

hi all,

I first came here in March 2018 after having a PSA of 38 and being diagnosed as Gleason 4:5

My oncologist agreed that taking into account how well I had responded to the hormone and RT therapy and my low PSA level she agreed I could stop my therapy at the 18 month point.

If it’s under 2.0 then they will just keep me under observation at my four monthly PSA checks for the next couple of years.

I wish everyone on this forum all the best with the treatment at whatever stage you are

User

Posted 13 Mar 2020 at 08:39

Originally Posted by: Online Community Member

Today, 5 clear months since finishing HT my PSA is up to 0.2 and my Onco is happy with that. I asked for a Testosterone test and it is only 6.3 which explains why the hot flushes are still rampant! I asker her that if my PSA has risen to 0.2 when my testosterone is so low, what will happen if it rises to normal levels, which I believe for a 68 year old is over 300.

I wonder if you are mixing up Testosterone level units?

6.3nmol/L is almost within the NHS normal range (6.7-25.7).

300 sounds like a US measurement in ng/dl which are not the units we use in the UK.

Here's a conversion page if you want to interpret US units.

Hot flushes don't always go away when testosterone gets back to normal. It often takes longer.

Edited by member 13 Mar 2020 at 08:40 | Reason: Not specified

User

Posted 16 Jun 2020 at 10:59

it's fine - you still have a prostate so your PSA is expected to rise as the hormones leave your system. Your long term aim is to stay below 2.07 - you are still a long way below that.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User

Posted 14 Nov 2019 at 03:16

Great result 👍

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Nov 2019 at 09:31

Big advantage of stopping HT early is being able to recommence the treatment later should PSA start rising.

Will have this conversation with my Onco when I see him again in March, good luck flying without a parachute.

User

Posted 14 Nov 2019 at 10:05

I owe a debt of thanks to everyone on this forum for the patience with which they responded to my many queries on diagnosis, I am aware that members like Lynne and Old Barry to name just two, must have been answering these questions very many times over. The solace i got from being on this forum helped me cope with the first months of near depression.

I now attend meetings in my local hospital called "Living with and beyond cancer" where i join groups discussing dealing with the impact of cancer diagnosis and treatments.

Reading the contributions on here I am very aware that there are so many possible different outcomes and reactions to treatments, compounded by the differing standards from one NHS are to another.

One last point is i heard in the recent news that the rectal hydrogel spacers are becoming available in the UK, good news in the fight to reduce collateral damage to organs close to the prostate during RT

User

Posted 14 Nov 2019 at 20:20

Delighted to hear you're doing so well, and I wish you every happiness for the future. I saw my oncologist yesterday and I too will be stopping HT at the 18-month point, which for me will be 17th Feb next year, so only three more months to go!

Cheers,

Chris

User

Posted 22 Dec 2019 at 19:21

Today I hit the two months from end of Hormone Therapy. My last injection mid July now seems such a long time ago, I sure don’t miss those three monthly appointments with my GP.

I’m probably very impatient, but eight weeks from the end of hormone therapy, these damn hot flushes are still just the same as they’ve always been! But for me it’s a month at a time I’m now looking forward to the 22nd of January and the three month point to see if they began to subside by then. My specialist cancer nurse told me it would be anywhere between two and six months before I notice a change and at my next appointment mid March I will be getting a PSA and testosterone blood test. Can’t wait!
Alan Bennett

Edited by member 22 Dec 2019 at 19:22 | Reason: This cranky editor

User

Posted 22 Dec 2019 at 20:16

Hope you start to see an improvement soon, Alan. 57 days now until I finish my HT (but who’s counting?). I believe that bicalutimide, which I’m on, flushes out of the body relatively quickly, but we’ll see.

Hope you have a great Christmas - we’re both in a much better situation than we were in this time last year!

Very best wishes,

Chris

User

Posted 23 Dec 2019 at 00:26

John's hot flushes have been a permanent fixture - he finished bical 7 years ago. They have reduced significantly but they still happen.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 23 Dec 2019 at 01:52

Hot flushes can affect some men to a greater extent and or longer than others bur usually the longer you have HT the more time is takes for side effects to reduce to little or nothing. You could ask about a Testosterone test being added to your PSA for review in March which I hope will give a good result on both counts.

Edited by member 23 Dec 2019 at 01:53 | Reason: Not specified

Barry

User

Posted 12 Mar 2020 at 20:48

Well, I have had my March 2020 review. To refresh, I had last HT jab July 2019 that expired October, my last 2 four monthly reviews had my PSA as undetectable.

She told me not to worry and there was no evidence to link a rise in testosterone to a rise in PSA, but at my next 4 monthly in July they would have a second set of data to compare and nothing would need to be done unless I broke the 2.0 barrier.

I confess to having been extra nervous in the buildup to today and now I’m going to have 4 months of normal life till next review.

Edited by member 12 Mar 2020 at 20:52 | Reason: Spelling

User

Posted 13 Mar 2020 at 07:02

Great result Alan. I'm at the 18 months on Prostap stage and see my Onco on Monday.

My PSA from last Saturday's blood test was 0.06 and T level 0.3, castrate level.

Interesting that your Onco reckons a rise in T has no impact on rising PSA, my guy told me the opposite.

Hope it all continues to go well for you.

John

User

Posted 13 Mar 2020 at 07:57

Good to hear your news, Alan. Sounds as if everything's going well for you. I've been off the bicalutimide for almost a month now, but I've not noticed any physical changes resulting from that yet.

Best wishes,

Chris

User

Posted 13 Mar 2020 at 08:01

Originally Posted by: Online Community Member

She told me not to worry and there was no evidence to link a rise in testosterone to a rise in PSA

That's barmy! Do you think perhaps she meant that there is no evidence of a link between rising testosterone and recurrence? A rise in PSA is normal when testosterone suppression stops - it is an unhealthy rise in PSA that should cause concern. Take a look at Ray's profile to see what happens to PSA when he is on / off HT.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 13 Mar 2020 at 08:39

Originally Posted by: Online Community Member

I wonder if you are mixing up Testosterone level units?

6.3nmol/L is almost within the NHS normal range (6.7-25.7).

300 sounds like a US measurement in ng/dl which are not the units we use in the UK.

Here's a conversion page if you want to interpret US units.

Hot flushes don't always go away when testosterone gets back to normal. It often takes longer.

Edited by member 13 Mar 2020 at 08:40 | Reason: Not specified

User

Posted 16 Mar 2020 at 07:54

Originally Posted by: Online Community Member

She told me not to worry and there was no evidence to link a rise in testosterone to a rise in PSA

Lyn

yes that’s what she meant, my poor explanation is at fault

User

Posted 16 Mar 2020 at 11:12

👍

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Mar 2020 at 11:47

Great to see you’re coming out the other side Alan.

I had similar treatment with HDR Brachy and Radiotherapy plus the dreaded Prostap HT for 2 years. I had my last injection in October last and my most recent PSA was 0.08, which is basically as it was whilst on the HT. I had a testosterone test as well and it measured 0.7 . I was hoping for a higher T level after 22 weeks but my nurse says it could take a year. She doesn’t want to see me for 6 months now and I will have a T check then too. I asked for 3 month PSA only check with my GP and she’s agreed to that or I’d have gone out of my mind waiting 6 months.

In myself, I don’t feel like the T is coming back yet and I still feel depressed and tearful. I’m just so looking forward to feeling mentally stronger and hoping that coming off the HT I will get there. I have only 1 more counselling session left on the NHS and not sure how I’m gonna cope without it but I’m very grateful to have got some sessions in the first place .

So now a question.....Am I likely to need a year or so to get the Prostap out of my system? I don’t really get the hot flushes much so that’s not a good indicator. I also didn’t get the fatigue like many do. I was replaced by a permanent staffer at work last May and can’t get back into work (too old I suppose at 64) and that’s also doing my head in as I’m not used to sitting around and hadn’t planned it to happen yet and before anyone says keep busy I’ve decorated the whole house top to bottom. 🤣🤣 and trained and run a Tough Mudder.

Well I suppose I can say I’m self-isolating now can’t I....

Apologies for rambling on and also hope you don’t mind me hijacking your thread a bit Alan 😊 and hope that your recovery and remission ( cure) carries on as it has so far. Best of luck.

Phil

Edited by member 18 Mar 2020 at 13:33 | Reason: Removed some stuff....

User

Posted 25 Mar 2020 at 20:31

I finished My 20 Fractions IMRT September 18

now nearly 18 months later I have some rectal bleeding it’s bright red with dark spots. Anyone else experience this? Or got an idea why 18 months later?

cheers

Alan

Edited by member 25 Mar 2020 at 20:31 | Reason: Not specified

User

Posted 25 Mar 2020 at 20:35

Phil

i stopped Triptorelin 5 mo this ago, my PSA has gone up from undetectable to 0.2 but my Testosterone is 6.3

Oncology says the 0.2 is brilliant news and testosterone having gone from 0 to 6.3 is good progress after just five months, she hopes it could be back to normal by the time I get my next four monthly in July

I can honestly say I still get the hot flushes but not so often and a bit less intense and as for my exercise and cycling I am now noticing more strength returning to my muscles which must be due to the rising testosterone

User

Posted 25 Mar 2020 at 21:47

It is easy to assume everything is to do with the cancer or the treatment but could you possibly have piles?

RT damage to the bowel commonly appears between 2-5 years after the treatment; the RT can weaken the walls of blood vessels making them more vulnerable to rupture. Have your stools been a bit harder recently? Had a really big poo or needed to strain more than usual?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Mar 2020 at 00:32

Lynn

Thanks, As usual thinking upon what you said some of that applies to me at the moment.

as usual thinking upon what you said some of that applies to me at the moment.

I have been little bit constipated And have been straining so perhaps that could’ve been why

But as you say I guess after radiotherapy your first guess is always the blame that

but as you say I guess after radiotherapy your first guess is always the blame that

I will keep an eye on it Because that’s all I want to do at the moment with the burden that is on the national health service

User

Posted 26 Mar 2020 at 10:43

Hi Alan. I do hope your bleeding stops soon. I must admit if I have particularly hard stools I sometimes get a little bleeding. Something maybe we have to put up with now ....possibly nothing to do with the RT but just old age 🤣

You are about 3 months ahead of me now although I started earlier. I had my last Prostap in October ‘19 and was hoping to see a rise in Testosterone at my last blood test, but was not to be - still at 0.7 . I have another blood test in July but only for PSA. Next T check is in October and I hope to see a significant rise by then. I am a bit paranoid about it and feel my beard every morning to see if it’s growing any quicker . I am slightly mad after all.
I am just getting my bike out and pumping the tyres up to get out and get fitter again after lapsing after my Tough Mudder last year, but they’ve just closed the country park right next to where I live so I will have to cycle along the sea wall ( with everyone else doing the same 🤣🤣)

It’s good to hear your story as we are quite similar . I was G9 PSA 27 T3b I started HT in Jan ‘18 then HDR Brachy plus 23 Radiotherapy sessions in July ‘18. I was on the HT for 2 years as they wouldn’t listen to me coming off at 18 months.

Fingers crossed for your bottom issues and for your recovery to full health from this awful disease.

Good luck, stay safe, and sane ....

Phil

User

Posted 16 Jun 2020 at 10:41

Hi Alan, and the all other guys coming off the HT.

Quick recap: Last HT Prostap injection October’19. PSA in December’19 0.07. In March it was 0.08 and my Testosterone was 0.7.

Just had another PSA test and it is now 0.97 . Quite a jump but maybe that’s normal???? Should I phone my specialist nurse as this was an extra PSA they threw in at 3 months as they wanted it to be 6 month gap so they may not be monitoring this result....

I have added a new post about this but it hasn’t appeared yet.

Phil

User

Posted 16 Jun 2020 at 10:59

it's fine - you still have a prostate so your PSA is expected to rise as the hormones leave your system. Your long term aim is to stay below 2.07 - you are still a long way below that.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 16 Jun 2020 at 11:07

Thank you Lynn. It just seemed like a big jump...

Just got to wait 3 months for my next test which will be PSA and Testosterone.

Phil

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