Relapse Time

Hi Barry

thanks for your thoughts and yes I have discussed, but actually changing consultant due to having relocated. My plan is to move over to an oncologist and certainly will have the conversation about micro cancer cells. Advice varies on PSMA scans, wait to see more at 0.5 - 1 or go for the prostate bed at 0.2. Seems like a shot in the dark to have ST without some idea where the PSA rise is coming from, although I read that 70/80% of reoccurrence after 5 years is found in the prostate bed area. 

I would not assume the Estradiol patches will become generally available, unfortunately. As mentioned, many side effects of ADT are reduced, although breast gland growth is increased (and Tamoxifen cannot be used as it stops the patches from working, as was discovered accidentally on the trial). However, there are additional issues with the patches too. It's difficult to get the Estradiol dosing right, because the patches are not consistent in the dose they manage to deliver through the skin, unlike injections or tablets. This needs significantly more monitoring (including regular Testosterone and Estradiol levels) than is required for the injections, and regular reviews of the number of patches required for each person. Although the patches are cheaper than the injections, when you add in the extra monitoring appointments, I suspect they will work out more expensive. Patches do sometimes fall off with sweat, which can go unnoticed until you next get undressed.

I did talk with the PATCH trial principle investigator about using patches with the injections rather than instead of them. This is done off-label in the US which gives the effectiveness of the injections and reduction in the ADT side effects along the lines of the PATCH trial, without the extra monitoring required on the PATCH trial. Unfortunately that wasn't part of the PATCH trial, so she couldn't see any route to have that adopted in the UK at the moment. Given the Estradiol patches are generic, there's no drug company to fund such a trial, so it would need to be funded by someone like Cancer Research UK like the current PATCH trial is.

Not all patients having salvage radiotherapy are put on ADT, and you could ask how important your oncologist thinks that is in your partner's case. Another option is to use Bicalutamide rather than the LHRH medications which gives many of the benefits of the Estradiol patches (because it also increases estrogen levels), without the downsides. Bicalutamide alone is increasingly being used for time limited ADT during curative radiotherapy, and in this case you can normally take Tamoxifen (unless you have a history of DVT or cardio issues). (This is completely different from taking Bicalutamide with LHRH injections.)

Nothing you take as a supplement will come anywhere near close to the effect of the ADT medications. If it did, you'd have the gender dysphoria children consuming it by the bucket load, instead of paying a fortune for black market LHRH injections which are also used as puberty blockers in that case.

not using "menopause tablets "  but  a phytoestrogen (estrogenic plant) specifically one from the rainforest which is extremely potent I have been using it for years 

Hi,  I'm in a similar situation from an op in 2016.  At 5yrs my psa became detectable at 0,06 then went up to 0.09 but it's stayed near that level for some time.   I was told I'd be referred to Oncology at 0.2 although depending how fast it's going I might push for earlier.   Also I was told a psma scan would be at 0.5 but I consider that too high as well and will seek one or pay much earlier.

You haven't stated your full psa record unless you've only had 1 detectable test although I don't know what your undetectable level is.  It's worth knowing how fast it's developing as that is a big factor.

I'm not sure if an oncologist would convince me to have radiation without a scan, it would be tempting.  I think if I was offered RT without a scan I'd consider paying for a psma scan and I'd prefer it to be at just over 0.2 depending how fast it's growing as it would probably be higher by the time it happened.   Although there's a risk it might tell me things I don't want to know.   

There's also the question of whether to have hormone treatment with RT.   A nomigram I did showed a good increase in probable success with hormones for my Gleason 4+4.   Although with my psa almost static for some time I wonder if it is Gleason 4 or hopefully nothing.  Good luck Peter