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 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 19:40

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.👍

User

Posted 28 Mar 2020 at 09:02

That’s great Pete. Hope the oncology telephone appointment on Wednesday goes well. I can’t see why not with a PSA if 0.02 .
How are you feeling in yourself, do you feel the HT has left the system now ?

Phil

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 23 Apr 2019 at 20:31

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 15:32

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

Ido4

User

Posted 28 Sep 2019 at 20:21

Saw my Oncologist this morning who was very upbeat about my latest PSA being <0.02.

He also informed me that my testosterone reading was measured at 3.7 compared to only 0.2 three months previously.

I told him I kinda guessed that was the case because of leg hair growing back.

He was also pleased to hear that all leg and back pain has disappeared since finishing the hormone treatment.

He was very optimistic about my prospects going forward and said that if he had to put a number on it he was about 90% confident that I will not have a further recurrence.

I certainly hope he’s right but let’s wait and see.

Next appointment in March 2020 so all this stuff will now get parked at the back of my mind.

After more than 5 years of this I have learned to live with it and no longer fret about it too much.

I’m off to Dubai in 2 weeks for a few weeks of sun, sea and sand so this Pca stuff is definitely going on the back burner.

User

Posted 28 Sep 2019 at 21:35

That’s excellent news, Pete. Enjoy your holiday!

Best wishes,

Chris

User

Posted 29 Sep 2019 at 14:02

Great news. Enjoy the holiday.

Ido4

User

Posted 29 Sep 2019 at 15:05

Great news !! I don’t fret about it too much either over 4 1/2 yrs on , but tests and scans next month again. It’s like living my life in 6 month slots lol.

Have a well deserved holiday !

If life gives you lemons , then make lemonade

User

Posted 21 Oct 2019 at 17:00

Hi Phil

Thanks for posting.

I am currently in Dubai soaking up the sun and sea, but still finding time to check out the PCUK forum.

You’re absolutely right about not coming out the other side the same as you went in.

I think this applies to all the radical cancer treatments and whilst I am not aware of any adverse mental issues, I have experienced pretty life changing physical issues. I am nowhere near the guy I was before this whole thing kicked off going on 6 years ago.

However thanks to the doctors and nurses of the NHS I am still very much alive and hope to stay that way for a long time yet.

User

Posted 21 Oct 2019 at 17:12

Best wishes Goalhanger with a very speedy improval post HT treatment. Mental Illness has affected me all my life really through childhood issues , so the thought of starting HT absolutely terrifies me. In fact any further change at all terrifies me if I’m honest. I’m not good with change. Will find out in one month after scans. Take care !

If life gives you lemons , then make lemonade

User

Posted 22 Oct 2019 at 09:43

You’ll be glad you are off the HT wagon. You are absolutely right no one comes out the other side of these radical treatments the same as they were. But I’m very grateful to still be here. I am still on fluoxetine which takes the edge off any anxiety (not completely, I still over react at times 😬). My mind is still not as good as it was pre HT but I have found in the last few weeks my sleep has improved significantly which is very welcome. There are times when I feel more energetic too but still have to pace myself.

Look forward to seeing your progress off HT.

Ido4

User

Posted 22 Oct 2019 at 13:22

I would keep the updates all together on this thread; it helps everyone to check back to where you have been and where you are now.

I think it would be a rare man that is the same after as before - but then I guess that could be said of anyone diagnosed with a (potentially) life limiting disease.

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

User

Posted 28 Mar 2020 at 01:32

Great PSA result Pete

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

User

Posted 28 Mar 2020 at 07:31

Great news Pete.

Ange

User

Posted 28 Mar 2020 at 11:28

That’s true, we are permanently changed both mentally and physically after the radical cancer treatments and all the agonising.

My T score was 0.2, 9 months ago and 3.7, 6 months ago.

So it is definitely on the move and it will be very interesting to see the latest score.

I must admit, every time I get a good PSA result it feels like a further 6 months reprieve.

The alternative is a second biochemical recurrence which would put me on a much feared slippery slope.

Edited by member 28 Mar 2020 at 11:34 | Reason: Not specified

User

Posted 01 Apr 2020 at 12:34

That’s great news ..👍

I see your T has taken a year to get back to 8.7 and was 0.2 at around the 3 month mark. So my 0.8 isn’t so bad at 3 months since HT was due to start diminishing.

Looking forward to my next PSA and T scores in 6 months. I do have a PSA only booked for 3 months but not sure if they’ll still do it due to restrictions , if any at the time.

Hope you can relax now all the signs are good. Keep safe.

Phil

User

Posted 10 Sep 2020 at 08:22

Best of luck Pete. Fingers crossed it’s something else and simple to fix.

Phil

User

Posted 10 Sep 2020 at 10:14

Good luck Pete. Hopefully the pains are not cancer linked.

The dread you describe is so recognisable to me and I’m sure many others.

Ido4

User

Posted 25 Sep 2020 at 15:01

That’s great Pete , long may it continue. I’m now 11 months after my last HT injection. Had my 6 monthly telephone consultation. PSA now 1.2 , up from 0.97. Consultant seems ok with that. Testosterone now up to 5.5, so a little way to go with that but a good improvement none the less.
Still seem to need antidepressants but I have at least reduced the dose.

Phil

User

Posted 25 Sep 2020 at 22:39

Great results Pete.

User

Posted 28 Sep 2020 at 23:02

Castrate level is generally thought of as 20 ng/dL or 0.7 nmol/L - normal levels are 250 - 1000ng/dL or 8.7 - 35nmol/L - a man of 65 could be in the lower half of the range rather than the upper half without anyone being concerned.

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

User

Posted 04 Feb 2021 at 20:35

Sorry your PSA has risen Phil. Have they discussed what will happen if PSA rises again over next 3 months?

Ido4

User

Posted 04 Feb 2021 at 21:17

Sorry to hear your latest news Phil - stay positive.

My next PSA update is in March - beginning to think about it now.

User

Posted 04 Feb 2021 at 22:20

Phil , all best wishes to you. Thank you for all your support. Hope things come good and just keep living between results ok. That’s the most important thing for sure !

If life gives you lemons , then make lemonade

User

Posted 05 Feb 2021 at 00:37

Goalhanger was it a dip test at the GP practice or a proper test sent off to the lab? That doubling time is remarkably short for a cancer recurrence so my instinct would be deep seated infection or inflammation; the other symptoms would also point that way.

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

User

Posted 05 Feb 2021 at 15:47

Hi Phil,

I’m sorry to hear about your PSA rising. I’m keeping my fingers crossed that it’s because of your recent water infection that this has happened and think it’s too much of a coincidence for it not to be the reason. Hopefully the Tamsulosin will get you back on track.

I know it’s easy for me to say don’t worry, but I wanted to let you know I’m thinking about you.

Take care and keep thinking positively.

Ange x

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User

Posted 07 Nov 2018 at 22:23

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 20:04

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 11:38

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 19:40

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.👍

User

Posted 22 Apr 2019 at 19:58

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 18:28

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 20:31

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

User

Posted 24 Apr 2019 at 02:32

Thanks for your input Lyn.

User

Posted 10 Jun 2019 at 14:22

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 14:24

No sign of any side effects reversing yet.

User

Posted 10 Jun 2019 at 15:32

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

Ido4

User

Posted 10 Jun 2019 at 15:58

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 09:59

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.

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