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HT at an end

User
Posted 14 Jan 2019 at 18:57

Hi All


OH had his 6-monthly Onco appointment today at MV today and as expected he has been taken of HT after 2 years. The plan is to continue with 3-monthly PSA tests and if/when PSA reaches 1.00 we are to make an appointment with the Oncologist again. I was surprised it was 1. I expected it to be higher than this, what do you all think?


Also does anyone know how long it will take for th HT to leave his body. Will hot flushes and other symptoms still last for a while? xx

Debbie xxx
User
Posted 14 Jan 2019 at 18:57

Hi All


OH had his 6-monthly Onco appointment today at MV today and as expected he has been taken of HT after 2 years. The plan is to continue with 3-monthly PSA tests and if/when PSA reaches 1.00 we are to make an appointment with the Oncologist again. I was surprised it was 1. I expected it to be higher than this, what do you all think?


Also does anyone know how long it will take for th HT to leave his body. Will hot flushes and other symptoms still last for a while? xx

Debbie xxx
User
Posted 14 Jan 2019 at 22:30

Thanks Lyn, thats very useful. Onco did say that he wouldnt necessarily start treatment immediately once the PSA hits 1, he may wait a while to see how things progress but he wants to know once we hit 1. I am aware OH’s treatment was different to a lot of others on here and i am grateful for an imaginative Onco. We will just have to hope that things stay stable from here on out and hope for the best xx

Debbie xxx
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User
Posted 14 Jan 2019 at 19:50

Hi Debbie,


If I read your profile correctly your husband had HT, chemo, RT, brachytherapy and HT.  That is amazing and I wonder if it was on the NHS.  I can't answer your question but think that as his psa is less than 0.1 then for someone who has not had his prostate removed an increase to 1 would be the trigger point rather than 0.2 for an RP patient. Although I'd assume they'll be thinking harder if it starts to rise and how fast it rises, particularly if you insist.    Yes let's hope it stays low. Regards Peter

User
Posted 14 Jan 2019 at 20:02

Hi Peter. thanks for your reply and no the OH’s treatment was done privately thanks to BUPA.  We used the same consultant we were given on the NHS when he was initially diagnosed but then kicked in the private medical on diagnosis. i have no idea if the treatment would have been different if we had stayed with the NHS xxx

Debbie xxx
User
Posted 14 Jan 2019 at 20:38

Hi, 


I've been off the HT for just over a year. The fatiigue disappeared after 5/6 months, I've managed to lose significant weight, and the weird mood stuff has gone too. I still get the occasional hot flush, maybe three or four a week. I've been told I'll have them for life.


I still have zero libido, and the penis shrinkage is permanent too.


But life's good, and I don't even get anxious about my PSA, though, of course, I'll continue to monitor it. One day I'll get a tap on the shoulder, but life will go on until that day.


 

.
-- Andrew --
"I intend to live forever, or die trying" - Groucho Marx
User
Posted 14 Jan 2019 at 20:50

Hi Heenan. Thanks for your response. Did your PSA rise when you came off HT or is it still the same (thereabouts) a year later? x

Debbie xxx
User
Posted 14 Jan 2019 at 21:36
You can expect the PSA to rise; the hormones have kept it falsely low so the next 18 months is a tester for what his normal level is going to settle at. Like you, I am surprised that the onco wants to see him if it goes up to 1 - usually, with a prostate still in situ the threshold for rereferral is at least 2.0 and some oncos prefer to wait until 5 or 10 or even, in a hospital in Doncaster, 20!

They say that the side effects will take as long to clear as they did to appear, so if he had side effects almost immediately after starting HT then they should disappear quite quickly whereas if they took a long time to develop he may be stuck with them for a couple of years. Some side effects are permanent for most men, like breasts and hot flushes.

As I think I have posted to you before, your OH’s treatment plan was exceptional and I think only one or 2 other men on here have had chemo with curative RT/HT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Jan 2019 at 22:30

Thanks Lyn, thats very useful. Onco did say that he wouldnt necessarily start treatment immediately once the PSA hits 1, he may wait a while to see how things progress but he wants to know once we hit 1. I am aware OH’s treatment was different to a lot of others on here and i am grateful for an imaginative Onco. We will just have to hope that things stay stable from here on out and hope for the best xx

Debbie xxx
User
Posted 14 Jan 2019 at 23:35

Hi Debbie,


I've read quite a lot of profiles and your husbands treatment looks to be a collection of the latest thinking.  It ticks so many boxes, to me anyway.  It is possible he'd do that as NHS treatment, it could be that he's very up to speed and/or the resources and facilities are there.  Whatever happens he's given you the best chances, that's a great thought to have within you. Regards Peter

User
Posted 15 Jan 2019 at 09:11

I was warned that my PSA might rise on HT cessation - the Dead Cat Bounce - but that hasn't happened yet (13 months since last jab). I'm still trundling along at <0.1


We're all different, and as has been said, a sharp rise is not unusual nor (necessarily) significant. 


Your husband's 'cocktail' looks like a good one - I never understood why chemo isn't routinely given with either surgery or R/T (or both!). But then the religious mantra that "50% of men with prostate cancer die of something else first" seems to have convinced the medical profession that the usual cancer mantra - "Hit it hard and hit it fast" seems to have been thrown out of the window.

.
-- Andrew --
"I intend to live forever, or die trying" - Groucho Marx
User
Posted 15 Jan 2019 at 09:13

Hi Debbie, everything possible has been thrown at your husband’s PC. The way he has coped with the treatment and the response to it is excellent.


As Lyn says PSA will rise, he still has a prostate so that is to be expected as the healthy prostate cells recover from the ondlaught.


I looked up cancer research uk and they have the same defintions as seem to be used across the world for biochemical recurrence.



PSA levels after treatment


After surgery to remove your prostate (prostatectomy)


PSA levels are usually extremely low (below the normal range) about a month after surgery.  They should be < 0.02 ng/ml.  If it increases above 0.2 ng/ml this can indicate recurrence.


After external beam radiotherapy


PSA levels usually get lower slowly over months or years.  Defining the limit for cure is complicated and you should ask your cancer specialist. Usually a level of 2 ng/ml above the lowest point after treatment (the nadir) is taken as a sign of recurrence, or 3 increases in a row (consecutive increases).


After internal beam radiotherapy (brachytherapy)


PSA can rise temporarily after brachytherapy. This is called PSA bounce. The level then lowers slowly.  Usually a level of 2 ng/ml above the lowest point after treatment (the nadir) is taken as a sign of recurrence.”


The oncolgist is being very proactive by wanting to see him if PSA reaches 1.0, that is a good thing.


Hopefully your husband will remain cancer free now.


Best wishes,  Ian.


 

 
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