Stopping Bicalutamide to Lower PSA?

User

Posted 29 Oct 2018 at 11:44

I took an 87 year-old friend with PCa to see his urologist today. He has had prostate cancer for four years and was diagnosed following a raised PSA of 300. He has had three-monthly abdominal hormone implants since then which brought his PSA down to 3.6 for around two years, and then it started to rise again, and so was put on Casodex.

That worked for two years, but it has risen to 8.6 over successive blood tests. The urologist surprised us by telling him to stop the Casodex as that may cause the PSA to drop! It seems counterintuitive to discontinue PSA hormone-reducing treatment and expect PSA to reduce thereafter. Of course the urologist knows best, and we have a follow-up appointment in three months, with hopefully a PSA reduction. She said the cancer can start to feed off the Bicalutamide instead of retarding it.

She offered to arrange bone and CT scans as he has never had them, but as he is fit and well, has no problems with his PCa and suffers no effects from the HT, we decided to defer those until the next consultation, if required at all. He has never had a biopsy, and probably doesn’t want to have one.

The urologist was Latvian, with a lovely ‘bedside’ manner, so I thanked her in both Latvian and Russian which bought a big smile to her face, as it always does when I travel and thank people in their native language. I can say thank you in around a hundred languages, and can swear in a few too!

All this HT is completely new to me as I have only really researched the surgical side of PCa. My friend and I would be most grateful for any comments you might like to make regarding his situation and other peoples’ similar experiences.

Many thanks.

Cheers, John

Edited by member 29 Oct 2018 at 13:43 | Reason: Not specified

User

Posted 29 Oct 2018 at 19:45

It is called anti-androgen withdrawal syndrome or AAWS - lots of data available on it, as I posted on here a few days ago.

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

User

Posted 01 Jan 2019 at 13:40

He has had only quarterly abdominal implants for four years, and then started Bicalutamide after two years, which has now stopped.

Although he is very well in himself, he is despondent as the first anniversary of his wife of fifty year’s death was yesterday, which coincided with her birthday! And of course he’s now worried to death about his PSA increase, although I have told him not to.

I think he has seen the urologist twice in the four years, and all was well until the Bicalutamide stopped working.

He is one of two very close friends who came out of the woodwork when I was diagnosed with PCa who said ‘I’ve got it too’.

The urologist is only that. I think non-invasive scans are in order, as he has never had one, together with a rapid referral back to a specialist of whatever discipline.

Cheers, John.

Edited by member 01 Jan 2019 at 13:58 | Reason: Not specified

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User

Posted 29 Oct 2018 at 17:05

It does seem to be counter intuitive but what your friend's oncologist proposes is not new and in some cases as been shown to have worked for a time . It's a long time since it has been mentioned on this forum to the best of my memory but maybe somebody else is able to relate an experience or have more knowledge about it.

Barry

User

Posted 29 Oct 2018 at 17:23

This effect has been experienced by others. It was tried by my oncologist when casodex stopped working but low dose steroid, dexamethasone, needed to be added and that did reduce my PSA for a year.

User

Posted 29 Oct 2018 at 19:45

It is called anti-androgen withdrawal syndrome or AAWS - lots of data available on it, as I posted on here a few days ago.

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

User

Posted 29 Oct 2018 at 19:54

https://community.prostatecanceruk.org/posts/t12692-Dad-diagnosed-and-had-open-prostatectomy#post202701

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

User

Posted 01 Jan 2019 at 12:05

My old pal stopped the Bicalutamide after two years as instructed, and his PSA has just leapt to 20.7 in two months. I think the urologist knew this was a possibility, but worth a punt.

He is going to see his GP tomorrow, but I said he’d be better off with the urologist. Can GPs prescribe alternative androgen deprivation drugs to Bicalutamide (as I expect that will be the way forward)?

He still has no symptoms apart from PSA and has never had any scans.

Any suggestions folks?

Cheers, John.

User

Posted 01 Jan 2019 at 13:22

Sounds like he is now androgen independent (aka castrate resistant). Did he ever have RT? If so then he needs the GP to refer him back to his oncologist. The GP cannot prescribe a new HT and a urologist should just refer him to oncology.

If the uro has been managing his care all this time, something went wrong at the beginning ... unless the urologist is actually a uro-oncologist. I worry about men diagnosed with advanced PCa who are managed totally by a uro - most have neither the expertise or access to trials, new regimes, etc. All uro-oncos have to attend a national conference every year where new thinking, treatments, research findings and NICE guidelines on these are all discussed. Urologists have a similar event but I don't think they are required to attend.

In your friend’s case, I would expect the onco to discuss chemo (perhaps not suitable in this case but who knows), abiraterone or enzalutimide, radium 223 (if he has bone involvement) and / or steroids.

Edited by member 01 Jan 2019 at 13:30 | Reason: Not specified

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

User

Posted 01 Jan 2019 at 13:40

He has had only quarterly abdominal implants for four years, and then started Bicalutamide after two years, which has now stopped.

I think he has seen the urologist twice in the four years, and all was well until the Bicalutamide stopped working.

He is one of two very close friends who came out of the woodwork when I was diagnosed with PCa who said ‘I’ve got it too’.

The urologist is only that. I think non-invasive scans are in order, as he has never had one, together with a rapid referral back to a specialist of whatever discipline.

Cheers, John.

Edited by member 01 Jan 2019 at 13:58 | Reason: Not specified

User

Posted 01 Jan 2019 at 13:59

In one way, I am not sure how useful scans will be at this stage - whatever treatment he has will be systemic rather than targeted. It would be really useful to know exactly where the spread was thought to be 4 years ago though, and a scan now would confirm it.

Depending on your CCG, he may have to go back to the urologist to get a referral to an oncologist but I trust that with you on the case, the uro will not be allowed to refuse?

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

User

Posted 01 Jan 2019 at 14:17

Well, as he has never had any scan to my knowledge, I don’t know what the assumptions were four years ago on diagnosis, and as I said, he’s kept it a secret from everybody.

He is completely compos mentis, but doesn’t understand the first thing about PCa, and so has prostrated himself to the care of the NHS.

And bearing in mind he has had four years of symptom and pain-free living, that was probably the right thing to do.

I, of course, would have been more pro-active, quite possibly with exactly the same outcome!

So, GP referral to specialist tomorrow (not sure that’s even necessary, as he’s not been discharged from urology pending this latest PSA).

Cheers, John.

User

Posted 01 Jan 2019 at 15:44

No, probably not. It is an age thing ... my dad doesn't get that if he wants to see the uro he just needs to ring the secretary; he goes back to the GP to ask for a referral every time :-/

Will he let you go with him to the GP appointment? The GP will have letters about the diagnosis in his medical notes.

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

User

Posted 01 Jan 2019 at 16:01

For future info could your friend register for Patient Access whilst at surgery. My area allows documents to be read.

Ray

User

Posted 02 Jan 2019 at 02:30

He has just remembered he had a scan four years ago ‘That tube thing?’.

He is going to phone the urology secretary today to book a follow-up appointment.

Cheers, John.

P.S. I was in the pub last night sitting at a table with five males and two females. Four out of the five men have / had PCa! I count myself in the ‘had’ camp.....for now....

User

Posted 02 Jan 2019 at 19:02

My goodness John. What's the name of the brewery? I'll keep off it.

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