Hi All
It will be almost 24 weeks from referral but I am due to have a consultation with the uro/radio oncologist next week. I may have a difficult decision to make and welcome advice on the questions below.
I don't specifically know what to expect but I anticipate an offer of RT + HT or possibly AS - or RT alone if my preference is accommodated.
Given my age (78) and CKD 3b + single kidney, I don't want HT, and communicated that in advance.
I am T2c, Gleason, 3+4, 90% 3 and 10% 4 on the left side and 3+3 1% on the right side. PSA 13.1 in July 23 and 14.32 Nov 23.
36cc prostate, normal DRE, Grade 2, biopsy 6 out of 15 samples positive. - 9 mm, 5 mm, 1.3 mm - although MRI was 14 mm.
I was 'generally' classified as 'Intermediate Grade' although the USA/OZ/European systems would classify me as 'Unfavourable Intemediate' because of my PSA level.
The urologist wanted to classify me as T2a but agreed that strictly speaking due to a tiny focus (1% of 1 core) of 3+3 PCa on the right side, I should be T2c.
Currently no symptoms and physically and mentally fit.
Is A.S.feasible with a PSA of 14.32 in November and size of tumours? Would A.S. be acceptable given my age and stats, or risky? AS is very tempting but I know that failure would mean permanent HT.
If it was to be RT only - what Grey and over what period? Would RT only - be appropriate given my age and stats?
How long should I wait for RT only - given my stats and having already waited for 24 weeks?
If I was to accept RT (I am anti) what would be the shortest duration and dose/type to be effective - eg would 50 mg Bicalutamide for 4 months in total be effective? I am significantly concerned over HT given my urinary situation.
I was refused brachytherapy because of a previous HOLEP (TURP).
Any other comments?
Thanks
Dedalus
Hi Dedalus
I think you know my opinion - but I will start the bidding:
Last PSA 14.32 and rising. T2C, Gleason 7, CKD - If you take no action with a rising PSA and at some point in the future there is the possibility of it going "walkabout" - I would rule out AS.
If I were you HT (To reduce the testosterone) and then RT (To kill off the cancer). In view of the CKD 3 monthly PSA and eGFR tests are a must. If there is any reduction in the eGFR then HT should stop immediately. You can then review the treatment options BUT at least the HT will have reduced your PSA.
Good luck whatever course of treatment you go for.
Best wishes - Brian.
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Hi D
I remember u from before.
I agree with what Brian is saying, rising PSA, 14mm tumour and u don't know if near the capsule edge, quite an important point
However I know that u are not for the HT, understandably so but not everyone has major issues.
Again I agree with Brian but if you are adamant about not having then u have to take that gamble.
don't think AS a good option in this case so just down to with or without HT, your choice, don't think I'll ramble on any more
but best wishes
Steve
Hi Dedalus
No problem - you take care and let us know how you get on - we are all here for you.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi Steve
When I look at your stats they are not that far removed from my stats, you subsequently had a 13 mm tumour, me a 14 mm tuumour, You PSA of 11, me PSA 14. Did you end up 3+4 or remain at 3+3.
You didn't have HT. and have been fine with a low PSA. I assume you have not had any regrets?
D
Yes, stats similar, Gleeson stayed at 3+3 but don't forget 3+4 not the same as 4+3 , the latter being arguably more aggressive but either way at least not a 4+4 or above.
If I was in your position and against HT I would go without realising I was taking a bit , but probably only a bit, of s gamble.
The only thing I would think about and be worth checking, where is the tumour in relation to the tumour edge but bearing in in mind that mine was nearing the edge but not on it.
The other thing , what do the specialists say about not having the HT and what will their reaction be if u say u don't want it although I would hope that they might understand your reasons.
No I have no regrets but then so far everything has been ok.
Best wishes
Steve
Steve
Yes it would be of benefit in decision-making to know how close the tumour was to the capsule edge. I did ask the urologist but the answer I got was that it was in the peripheral zone! I will have to try harder. Your tumour was nearing the edge but not on it. I assume you believed that the RT would halt its progress toward the edge, so not of concern?
You ask what the specialists have said about not having HT. The urologist seemed acquiescent but a bit detached and indifferent. He has handed me over to oncology so probably feels he no longer has skin in the game. I will be meeting with the oncologist for the first time next week so as yet I don't know what the response will be. What would concern me is if I was told there was a wait of a month or months before I could commence RT. Apart from the treatment protocols, they possibly use HT as a holding strategy in a queuing system for scarce resources. I would be disrupting that system.
I think we could be even more similar stats-wise. My PSA was 1.49 in 2018. From 2018 onwards I didn't bother with PSA testing because I had a significant health issue to distract me. In 2023 I hadn't asked for a PSA test, the hospital lab did it by mistake when they were supposed to be testing my eGFR. 5 years later my PSA was now 13.1. So like you, that 5 year period could have been my A.S. phase where my PSA and subsequent Gleason would have progressed.
It is good that your PSA has stayed down at 0.28. Do you also follow a more plant-based diet and/or have an exercise regime?
D
I never wanted the HT but in the early days it wasn't suggested, tumour size 3-5 mm.
Only when I found out nearing the edge started panicking a bit but still didn't want it and on my third hospital by then.
The specialist said he didn't want to put me thru it, that's my kind of guy
Yours is on the peripheral zone so near the edge but try and find out more, terrible if they won't be more exact.
Yes my diet, is low in dairy, hardly any sugar or red meat, virtually no sweet and choccies. U do get used to it, always looking at the back of packets looking for saturated fat and sugar content.
All the best
Steve
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