Support after HT ends

User

Posted 08 Mar 2019 at 14:55

It’s now been a year exactly since I was told I had Gleason 4:5 T2c prostate cancer.

I had my first Decapeptyl injection on the 24th of April 2018 and I’ve just had my fourth injection on the 23rd of January 2019. My treatment roadmap is laid out and I will have my fifth injection mid April and my sixth and final mid July. I just had my second review after finishing radiotherapy in September 2018 and have a current Nadir of 0.2

I’ve already received my date for my third review for the 8th of July where I’m hoping my nadir would have decreased even more, as I said above a couple of weeks after that I will get my last injection of my hormone therapy cycle

I’m beginning to wonder what support I will get once I’ve had my third review and my last injection in July.

There must be someone on here who knows what the procedure is once you finish your hormone therapy

Thanks for reading

User

Posted 08 Mar 2019 at 15:38

I asked my oncologist that question, Alan, only last week. He told me I'd be on 3 monthly PSA tests, with a visit to the clinic, for as long as I was on HT, and then I'd switch to 6-monthly PSA tests, with a telephone consultation with a cancer nurse, for 5 years after that. That's just my particular area, though - I'm sure that different Health Authorities have different procedures.

Cheers,

Chris

User

Posted 09 Mar 2019 at 11:12

"what is the procedure once you finish your hormone therapy"

Basically, you get on with your life!

I finished my HT 15 months ago, and I currently have my PSA checked every three months. I'm pondering whether to go to four.

I have been discharged from the oncology department, but they said they were happy to see me if my GP referred me back, and that has happened once, fortunately a groundless concern. I see my GP two or three times a year about other issues (mostly BP), and my PCa is always reviewed.

Plus, of course, like everyone else living with cancer, I look over my shoulder - we all know that cancer isn't behind every ache and pain, but we also know that it just might be behind the latest one - I never feel I'm wasting the NHS's time, because three minutes dealing with a concern is much cheaper for the taxpayer than mopping up afterwards (and I paid my share of taxes!).

User

Posted 09 Mar 2019 at 11:40

It isn’t a PSA bounce when HT ends ... that suggests that it jumps up and then goes back down. When you finish HT, your body (usually) starts to produce testosterone again and as the T increases, the PSA rises. For some men, T production recommences immediately and rapidly so PSA goes up in similar fashion. For other men, the T production is sluggish so the PSA only creeps up.

It may rise to between 1 and 2 over time as the healthy prostate cells regenerate.

PSA bounce is when the PSA rises immediately after RT or brachy (and sometimes during chemo) - it is the cancer cells screaming as they die.

Edited by member 09 Mar 2019 at 11:43 | Reason: Not specified

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

User

Posted 09 Mar 2019 at 13:07

Lyn ... 'screaming as they die' is great description!

Pallance ... no (detectable) rise so far

User

Posted 09 Mar 2019 at 23:35

Originally Posted by: Online Community Member

Some publications state for someone my age of 67 as long as it is below 4.0 it’s acceptable .....

I understand its not so much the first reading after I stop, its important that I don’t get three rises of PSA in a row.

you are looking at generic information I think. The publications seem to be referring to men that haven’t had PCa treatment- it does not apply to you and 4 would be too high for an irradiated prostate.

Similarly, the 3 rises in a row (over 0.1) applies to men that are having a recurrence after surgery - not applicable to men that have had RT / HT

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

User

Posted 10 Mar 2019 at 13:46

Not necessarily and actually quite unlikely - I think Heenan is quite unusual to not have any rise. Ray probably has the best profile for looking at long term tracking of PSA - see here https://community.prostatecanceruk.org/default.aspx?g=profile&u=728

But there is no way for you to guess or anticipate what your PSA will do in your case - as you well know, every man is different and if you approach it with a set idea in your mind of what you are hoping for, it may cause you undue worry later.

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

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User

Posted 08 Mar 2019 at 15:38

Cheers,

Chris

User

Posted 08 Mar 2019 at 17:02

I’ve been on 4 monthly checks since finishing radiotherapy, so I’ve just had one last week so the one in July will be my last check whilst I am on hormone therapy. It will be a very nervous time from October for me I presume as it’s six months for the hormone therapy to get out of your system I would expect a PSA check and review in April 2020.

I am also looking to find out as much information as I can about PSA bounce which I hear is normal once you get your testosterone back after hormone therapy. As I still have a prostate and some healthy cells inside it I can expect some increase in my PSA.

Edited by member 08 Mar 2019 at 17:05 | Reason: Not specified

User

Posted 09 Mar 2019 at 11:12

"what is the procedure once you finish your hormone therapy"

Basically, you get on with your life!

I finished my HT 15 months ago, and I currently have my PSA checked every three months. I'm pondering whether to go to four.

User

Posted 09 Mar 2019 at 11:28

Andrew

May I ask if you got a PSA bounce or not once you came off of hormone therapy

User

Posted 09 Mar 2019 at 11:40

It may rise to between 1 and 2 over time as the healthy prostate cells regenerate.

PSA bounce is when the PSA rises immediately after RT or brachy (and sometimes during chemo) - it is the cancer cells screaming as they die.

Edited by member 09 Mar 2019 at 11:43 | Reason: Not specified

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

User

Posted 09 Mar 2019 at 13:07

Lyn ... 'screaming as they die' is great description!

Pallance ... no (detectable) rise so far

User

Posted 09 Mar 2019 at 21:58

Thanks Lynn

I do fully understand that the hormone therapy is holding my PSA levels down and as soon as I stop the treatment I do expect it to rise. Some publications state for someone my age of 67 as long as it is below 4.0 it’s acceptable, but as I have had 80% percent of my prostate destroyed by radiotherapy, there is not a lot of healthy prostate tissue left to give me what is called a normal reading. I understand its not so much the first reading after I stop, its important that I don’t get three rises of PSA in a row.

Thanks very much for your explanation is Lynn any more advice gratefully received

User

Posted 09 Mar 2019 at 23:35

Originally Posted by: Online Community Member

Some publications state for someone my age of 67 as long as it is below 4.0 it’s acceptable .....

I understand its not so much the first reading after I stop, its important that I don’t get three rises of PSA in a row.

Similarly, the 3 rises in a row (over 0.1) applies to men that are having a recurrence after surgery - not applicable to men that have had RT / HT

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

User

Posted 10 Mar 2019 at 08:32

Thanks very much Lynn

so once my last HT injection expires in October 2019 what PSA readings do younthink I should expect?

i.e if I was to stop HT now at 0.2 is that where it should stay?

User

Posted 10 Mar 2019 at 13:46

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

User

Posted 10 Mar 2019 at 14:53

Lynn

I’ve read ray’s profile very interesting and relevant to me. I’m trying to build my profile the same so that it can be of use to others.

Looking at the fluctuations in Ray’s PSA readings I wonder if he was told to abstain from sex and physical activity for 48 hours before blood test? When I went for my first blood test after I finished radiotherapy it just happened to be mentioned about sport and the day before my blood test I had done a 50 mile bike ride, (no sex unfortunately 😉)

So from now on I actually take three days off cycling before a blood test and as the hormone therapy has my libido completely under control avoiding sex is not an issue 😔

Anyway enough to say I will record my PSA tests as Ray has done, but mine are every four months and not quarterly like his.

Thanks again for your helpful comments Lynn

User

Posted 10 Mar 2019 at 15:24

You could abstain from exercise for a day or two before each test or you could do the opposite and always try to do some exercise the day before - it isn't what you do before a test so much as the consistency of what you do before a test. We know now that John's PSA is always a bit higher in August than it is the rest of the year ... presumably that is down to a few weeks of camping, barbecueing meat, eating cheese & cycling in France.

In reality, you can't live the rest of your life not doing something just in case it causes a tiny fluctuation in your results. The impact really is tiny and once your libido returns, it would be a shame to not have sex (if the opportunity arose) so perhaps easier to approach the rest of your life with a 'can do' rather than a 'better not' as far as pre-test behaviour goes.

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

User

Posted 10 Mar 2019 at 15:29

Absolute sense! But if I do a 50 mile bike ride before a blood test, when the next blood test came round the weather might be awful, or I don’t feel like riding and that would give me a difference in readings so I will stick to my plan.

I guess the upshot of this is, I am so nervous about coming off the hormone therapy and probably reading too much on the Internet and trying to organise myself too much. I will try and relax a little

User

Posted 12 Mar 2019 at 12:54

A quesion about sex after treatment. I understand what the function of the prostate is which is to produce the nourishing fluid for the semen. As I have had radiotherapy to the prostate where my cancer was 80% once I could have finished hormone therapy, Will my prostate start producing this fluid again as at the moment I have 100% dry ejaculations. I attended an ED clinic a few weeks ago and the nurse told me that the semen at ejaculation point had probably gone back into the bladder and would be voided as normal during urination .

User

Posted 12 Mar 2019 at 15:20

You are likely stuck with dry ejaculation I am sorry to say.

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

User

Posted 24 Apr 2019 at 12:41

I had my penultimate HT Injection this morning 😊 It’s little things like this that help getting life back on track slowly but surely. Final post Radiotherapy review on 8th July and PSA check, then last Triptorelin jab 2 weeks later on the 23rd! That’s 18 months only on HT, as Onco told me she approves me reducing from original 36 months due to my progress.

I had also read clinical studies, (albeit from other countries) reference 18 vs 36 months ADT

https://www.pcf.org/news/18-month-adt-optimal-for-locally-advanced-prostate-cancer/

These studies show that the low level of risk involved in reducing from 36 to 18 months of ADT are more than offset by increase in Quality of Life. But the decision obviously will be different for every case and expectations

Edited by member 24 Apr 2019 at 12:52 | Reason: Not specified

User

Posted 24 Apr 2019 at 15:14

Interesting thread . I am close to your journey Pallance. 1st Prostap injection Feb '18 , Brachy and RT finished Aug '18 and hopefully last Prostap in October, which is effectively 2 years on HT. I asked about 18 months and the consultant told me that if there are tiny cells left after zapping then the HT will starve them and they will die (screaming - as Lyn puts it). No idea if that is true but put the fear of God in me.....I want all those damn cells to scream as they die ....

I mentioned on another thread today that i now have full 'function' back with the help of the Ciallis 5mg for which I am mightily grateful for.

But, i do suffer more in the head as i get to within 2 -3 weeks of the injection and again for a week or so after. So wondering about the withdrawal type symptoms ....My counselor is preparing to support me during that period. Hoping i get the same support from the hospital. I have been on 6 month gap now till June for PSA and its nerve wracking so hoping they go back to 3 months after the final jab.

I shall watch with interest Pallance, good luck,

Phil

User

Posted 24 Apr 2019 at 15:18

By the way - can you call it 'ejaculation' if nothing is ejaculated ? Should it be Orgasm...........? 😆

User

Posted 25 Apr 2019 at 08:18

Good to read your progress, as always, Alan. Only a fortnight to go now until I have my first post-RT PSA test, so the nerves are starting to creep in a bit now. I don't expect mine to be as low as yours because, as you know, I've been on bicalutamide which blocks the reception of T rather than its production. Happy to say that all my side-effects have now cleared up and I'm back to my pre-treatment once a night toilet trips rather than the once every 45m it was at its worst!

Very best wishes,

Chris

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