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After Hormone Therapy

User
Posted 07 Nov 2018 at 20:34

Over the past 4 to 5 years I have had an Open Radical Prostatectomy, Salvage Radiotherapy and Hormone Therapy which I am still on.

I started HT a few months before my SRT started which is fairly usual.

Initially the plan was to keep me on HT for 6 months and end it just after the end of SRT.

However at the end of RT the Oncologist said he would keep me on HT for a further 18 months which might improve my chances of a “cure”.

I asked him what would happen after the end of RT if I had another recurrence and at what stage further treatment would resume.

He said that if PSA went to 5.0 ( I am currently <0.02), then some form of treatment would commence.

I didn’t question him further at the time but I have thought about it since.

I am concerned that the cancer would have been allowed, by inaction, to have spread too far by the time I hit a PSA of 5 and that I could be in trouble by then.

I am probably looking a little far ahead but I know that I will be scared when they stop HT.

Has anyone been down a similar route ?

If so, what was the outcome ?

Would appreciate any advice.

 

 

Edited by member 03 Jan 2019 at 05:15  | Reason: Not specified

User
Posted 07 Nov 2018 at 22:23

The point is that if you ever get to that stage, you will be incurable and will go back onto HT permanently (unless it stabilised dramatically and you can have the occasional hormone holiday) and all hormone treatments have a limited life span so they don't rush to start you back on them. Your onco says they would wait until 5.0 ... Some hospitals/ CCGs will wait until it is 10 or 20.

As you say, you are thinking about something that may never happen.

Edited by member 07 Nov 2018 at 22:24  | Reason: Not specified

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

User
Posted 20 Dec 2018 at 10:09
pete,i had my last zoladex injection 4th april 2016 for t3b no mo,just had my 6monthly check up it is still 0.03,so not to bad.
User
Posted 28 Jan 2019 at 17:20

Had my last Prostap injection today.

It’s good for 12 weeks.

After that I will be in uncharted territory.

 

User
Posted 22 Apr 2019 at 20:40

Ido4, Please keep me updated on your progress and I will certainly reciprocate on this thread.

I must say that I felt a certain sense of security whilst on Prostap which is now gone. 

Let’s see what the future holds.πŸ‘

User
Posted 23 Apr 2019 at 21:31
Some side effects can be permanent - loss of penis length / girth, moobs (you may be entitled to breast reduction surgery on the NHS if they are large and distressing), hot flushes. Some are temporary - breathlessness, weight gain, muscle loss, tendon / ligament problems, etc. Testicles do tend to regain their original size and weight if your testosterone levels rise back to pre-treatment levels. Unfortunately, for some men the testosterone never gets back to normal.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jun 2019 at 16:32

Great that your PSA has stayed low. I’m waiting on side effects abating too.

Ido4

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User
Posted 07 Nov 2018 at 22:23

The point is that if you ever get to that stage, you will be incurable and will go back onto HT permanently (unless it stabilised dramatically and you can have the occasional hormone holiday) and all hormone treatments have a limited life span so they don't rush to start you back on them. Your onco says they would wait until 5.0 ... Some hospitals/ CCGs will wait until it is 10 or 20.

As you say, you are thinking about something that may never happen.

Edited by member 07 Nov 2018 at 22:24  | Reason: Not specified

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

User
Posted 08 Nov 2018 at 02:10
Thanks Lynn, your reply is very helpful.

I must admit that I do tend to look at worst case scenarios as inevitable, when maybe they are not.

User
Posted 08 Nov 2018 at 12:08

What I am unsure about is what stage the cancer would be at if PSA went to 5 or 10.

Do you think it would be metastatic by then ?

Edited by member 04 Jan 2019 at 05:24  | Reason: Not specified

User
Posted 19 Dec 2018 at 21:27

I’m having my last hormone injection in January so next year could be interesting.

I will finally discover whether or not my Radiotherapy earlier this year killed the cancer or not.

Could be a rollercoaster of a year and I’m hoping that I don’t find myself further down the slippery slope at the end of it.

Would appreciate the input of anyone else who ended HT and waited to see if anything happens.

For me it will be an interesting experience but scary I think.

Edited by member 04 Jan 2019 at 05:25  | Reason: Not specified

User
Posted 20 Dec 2018 at 10:09
pete,i had my last zoladex injection 4th april 2016 for t3b no mo,just had my 6monthly check up it is still 0.03,so not to bad.
User
Posted 20 Dec 2018 at 21:01

Good to hear Radar and thank you.

I hope I get a similar result.

 

 

 

 

User
Posted 28 Jan 2019 at 17:20

Had my last Prostap injection today.

It’s good for 12 weeks.

After that I will be in uncharted territory.

 

User
Posted 21 Apr 2019 at 21:04
Well it’s 22nd April tomorrow and exactly 12 weeks since my final hormone injection.

So from Monday I am treatment-free and flying without a parachute or swimming without a life vest.

I sincerely hope and pray that my cancer was killed off by the SRT I had last year but I am not holding my breath.

It came back before and it can sure come back again.

Another biochemical failure would be a massive disappointment but not a surprise.

My next PSA test is due in June and then again October when my Oncologist will reassess my situation.

It is going to be an interesting year and I hope an uneventful one.

User
Posted 22 Apr 2019 at 12:38

I’m in a similar situation, last injection 3/1/19, see my oncologist in July with PSA tested the week before.

Like you I really hope the ADT plus salvage radiotherapy has done its job.

Squeaky bum time......

Ido4

User
Posted 22 Apr 2019 at 20:40

Ido4, Please keep me updated on your progress and I will certainly reciprocate on this thread.

I must say that I felt a certain sense of security whilst on Prostap which is now gone. 

Let’s see what the future holds.πŸ‘

User
Posted 22 Apr 2019 at 20:58

For those of you who finished hormone treatment some time ago, do testicles recover in size, and is size linked to recovering testosterone levels?

8 months in to HT, mine are less than half the original volume and shrinking fast, and I'm wondering if that's a one-way street?

User
Posted 23 Apr 2019 at 19:28
I will let you know in due course about the time span for reversal of all HT side effects.

It might take a while though.

User
Posted 23 Apr 2019 at 21:31
Some side effects can be permanent - loss of penis length / girth, moobs (you may be entitled to breast reduction surgery on the NHS if they are large and distressing), hot flushes. Some are temporary - breathlessness, weight gain, muscle loss, tendon / ligament problems, etc. Testicles do tend to regain their original size and weight if your testosterone levels rise back to pre-treatment levels. Unfortunately, for some men the testosterone never gets back to normal.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Apr 2019 at 03:32

Thanks for your input Lyn.

User
Posted 10 Jun 2019 at 15:22

Got my latest PSA today which was the first test since my hormone treatment expired on April 22nd - 7 weeks ago.

PSA is <0.02 and testosterone is <0.1.

So all is well right now.

Next test scheduled for October.

 

User
Posted 10 Jun 2019 at 15:24

No sign of any side effects reversing yet.

User
Posted 10 Jun 2019 at 16:32

Great that your PSA has stayed low. I’m waiting on side effects abating too.

Ido4

User
Posted 10 Jun 2019 at 16:58

Thanks Ido4.

Not sure if side effects are reversing or not - I think probably not.

Although I have lost almost 9 kilos in excess weight since HT expired and my leg and back pain is gone.

User
Posted 11 Jun 2019 at 10:59

Originally Posted by: Online Community Member
Some side effects can be permanent - loss of penis length / girth, moobs

The thing about these is they're avoidable in most cases when due to HT.

Outside of this forum, I'm finding many patients not only don't know this is avoidable, they're usually not even aware it might happen.

User
Posted 11 Jun 2019 at 11:57

Good luck to you guys coming off the HT. My last injection is due October and I can’t wait. My PSA is currently 0.02 so I’m hopeful....

My counsellor is worried about the time coming off the Prostap as I haven’t dealt with it mentally very well. So we are trying to save sessions for that time. My need to get my head back overcomes my worry about the RT not having worked, although it’s still there at the back of my mind.

Please keep us posted on your journeys after HT.

And again , good luck to you.

Phil

User
Posted 11 Jun 2019 at 13:16
It seems a bit puzzling why the Specialists insist you should stick rigidly to the 90 day intervals between HT jabs when the drugs and suppressants appear to stay in the body for weeks/months even years after the final jab.
User
Posted 11 Jun 2019 at 16:38

The catch is, not everyone.
Tests show that with 4 Zoladex doses, in 91% of cases, it maintains castrate level (0 - 1.73 nmol/L) over 4 x 84 days.
In 4% of cases, it was only just over castrate level (< 2 nmol/L) .
In 5% of cases, it escaped castrate level for up to 14 days.
In one out of 160 cases, it didn't maintain castrate level at all.
(ref https://www.accessdata.fda.gov/drugsatfda_docs/label/2013/020578s034,020578s035lbl.pdf page 10).

I would expect that if you extend the dose period, you would see a growth in the 5% of cases which bob up above castrate level for some days.

The other factor is that it can take some time for testosterone production to kick in even after the horomone dose has gone, but again, this varies a lot between people. I would not assume this is due to any drug still being in the body.

User
Posted 11 Jun 2019 at 16:50

Andy62, the Testosterone level will likely be dependent also on age and what your level was before treatment started.

I am hoping mine will come back soon after HT stops 😳...

Phil

 
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