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Alternatives to ADT / hormone blocking drugs. What happens if you refuse them?

User
Posted 13 Aug 2023 at 02:02

Hi,

I was diagnosed with Gleason 9  and had an RP in August 2022.

PSA went up on the second test after the op.

It turned out there was already spread to local nodes which meant that the operation could never have worked.

I had a month of radiation in March 2023 but declined to have ADT as the side effects looked really bad to me. I am already fit, active and diet conscious so what more could I do to counteract being tired, lazy and miserable?

My PSA is up after the second test following the RT.

I'm presuming that I will have a PSMA CAT scan to see what's up, then they will want me to do ADT.

My questions are: what happens if I decline ADT? I'd rather have, say, four good years than five ADT ones.

Is there an alternative to ADT? Immunotherapy? Cannabis oil?

Help!

Cheers

 

User
Posted 13 Aug 2023 at 09:43

You might have one or two mets which are amenable to SABR radiotherapy with a curative intent. A PSMA PET scan will be required to identify if that's the case (although they might start with a bone scan and/or abdominal CT scan as those are generally available much faster). Any more than a couple of mets and they're unlikely to offer a curative treatment.

HT is the primary treatment for advanced prostate cancer. If you refuse it, you are in effect refusing treatment. There are other treatments which are added on, but I doubt would be offered (or effective) without the HT.

You can always try it and see how you get on. You probably should do that before deciding to refuse treatment, because it might not impact you as badly as you're imagining.

What has been done by a small number of people is to defer HT until cancer symptoms show up, or there's imminent risk of something major or irrecoverable such as metastatic spinal cord compression.

Another option would be to use intermittent hormone therapy, where you start with HT and when your PSA has been very low for a while, you take a holiday (break from HT), and go back on to HT when your PSA reaches a level your oncologist decides (such as 10, perhaps). This works well for those whose PSA rises only slowly and they spend more time off HT than on it, but you do need an initial long burst to start with.

You might also look in to BAT (Bipolar Androgen Therapy), where you stay on HT medication all the time, but part of the time you are given Testosterone, so your body alternates between having and not having Testosterone. (The switching is done more frequently than is possible by coming on and off HT medications.) I haven't seen good outcomes for this, but I've only seen it tried when men have already become castrate resistant, and I suspect that if it works at all, it's probably more effective much earlier on.

User
Posted 13 Aug 2023 at 09:54

Thanks, Andy, for that reply,

I guess I should have said 'decline' treatment, rather than 'refuse'.

The ADT on offer is Goserelin. I understand that this is a three month course from one injection, the side effects from which last for six months, so if I have a bad reaction to it I have to wait six months to get clear. That would frustrate the hell out of me. 

I like the thought of waiting until it gets worse as that would hopefully give me some clear time and also make be feel it was definitely required rather than probably. Also, as most men get resistant after a while, it seems to me that it would delay the time until that happens as well.

Thank you for taking the time to reply.

User
Posted 13 Aug 2023 at 10:08

Goserelin/Zoladex is also available as a 4 week dose (standard is 12-weekly). The first one is often 4-weekly just in case you're allergic to it (very rare). The recovery time depends how long you've been on it. For a year or longer, it's probably around 50% of the time you were on it. I don't know recovery time where people were on it for shorter periods.

Chris J took the path you are suggesting.

User
Posted 13 Aug 2023 at 10:19

Thanks, I'll have a look at his path.

The shorter term Gosarelin sounds interesting.

 

User
Posted 13 Aug 2023 at 10:54

Hi Rumtac,

From my experience at Maggies, the side effects of HT vary greatly from on person to another, some have very little and others find they can be quite debilitating at times. They also greatly vary in severity and frequency, some have problems at night and some, like me, during the day. I’ve suffered from hot flushes, ED, brain fog, anxiety, insomnia, but the most recent and worst effect is joint ache/stiffness. My knees are the worst, at the moment at times I struggle to get off a chair at times. I haven’t however suffered from fatigue which seems to plague many men on HT.

My approach to it is to be proactive in tackling these issues, trying to find things that work for you…and above all give you some QOL. Yes, the side-effects can be a real pain in the arse but it hasn’t stopped me from having fun, which is so important when dealing with this disease.

I guess the only way you will find out is if your try HT and see how you react…it may well be that you get through it without too many issues.

Good luck whatever you decide.

Derek

User
Posted 13 Aug 2023 at 11:45

Rumtac, the time scales are different but the journey is similar. I had salvage RT without HT, but that was the recommendation of the oncologist. Last year following a PSMA scan I had SABR treatment to a single lymph node HT was not suggested but I had said I didn't want HT. I did tell the onco "didn't want" was not the same as "won't have".

This year I had more SABR treatment to another pelvic lymph node,this time six months of bicalutamide was suggested, I kept changing my mind but eventually decided to go ahead with the bicalutamide. I started taking it on 30/05/2023,  so far I have not suffered with too many side effects, the libido is probably starting to suffer,but that hopefully may recover after completing the course. 

I note you are in NZ so SABR treatment options may vary, I have used my wife's health insurance to go private and there is more flexibility in the private sector.

Thanks Chris 

User
Posted 13 Aug 2023 at 22:46

Thanks Derek,

Is that daily bicalutamide tablets? I think it's milder than Goserelin, also six months doesn't sound too bad. After RP and RT in the last year there's not much happening downstairs to be affected by the libido...

I've used both private and public, so far the public has been better (and cheaper) but that's a long story.

Cheers

Paul

User
Posted 13 Aug 2023 at 22:47

Thank you Derek, too.

 

User
Posted 13 Aug 2023 at 23:50

Paul , if the question was to me, yes 150mg daily. Got a blood test tomorrow, be interesting to see what if anything it has done.

 

Added, just to part answer your original question,my oncologist did say under NHS rules, not having certain treatments can possibly rule out have certain further treatments.

Thanks Chris 

Edited by member 13 Aug 2023 at 23:53  | Reason: Not specified

User
Posted 13 Aug 2023 at 23:57
Thanks Chris, I have doctor in ten minutes. i think it'll be time for another PSMA scan.
 
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