hard to come to terms with

Sanders, if you were my husband/partner/dad, I would be asking 2 questions
A) what is the testosterone level (and if that isn’t being tested, ask for a test ASAP)
B) were you originally diagnosed with adenocarcinoma or was it another less common type of prostate cancer?

I have some sympathy with your GP - since your PSA was staying below 0.2 there wasn’t really any reason for a GP to suspect cancer progression (although you have to wonder why it was being managed by the GP rather than you going back to the urologist / oncologist?)

The important thing will be to establish whether the HT wasn’t being effective in knocking your testosterone production out OR the cancer has learned to survive without testosterone. The next steps will depend on which of these applies - your testosterone should be at 0.69 or less.

There ar3 at least 27 types of prostate cancer, and some of th3 rare ones don’t behave the way we all expect. For example, there are a couple of types that produce no PSA at all, and some kinds don’t respond to hormone treatment. You should ask the oncologist whether you were diagnosed with adenocarcinoma (the common one) and if so, could it be that you have developed a rare type later. We had a member on here whose cancer developed in a really unusual way and his wife had to fight to get him retested but it did turn out that he had some small cell cancer mixed in with the adenocarcinoma.

My father in law died due to undiagnosed mets in his liver and kidneys; because his PSA was only 1.2 the doctors didn’t realise that it was spreading very quickly.

Are you in the UK? If so, 0.09 will presumably be 0.09 nmol/L and castrate level is anything below 0.7nmol/L. Some countries use a different measurement like 50ng/dL.

What your result means is that the cancer is surviving and active without testosterone, rather than the hormone treatment isn't working properly - in other words, you are now hormone refractory. They might suggest adding bicalutimide to get a quick response or they may move you to one of the newer complex hormone treatments that are designed to work on cancer that is hormone refractory.

Don't think you are on your way out yet though - some people have had a number of good years on steroids, enzalutimide, abiraterone, chemo or a combination of these. You could also ask about Zometa to help with your bone strength.

Which hormone have you been on up to this point?

PS  Was it definitely 0.09 and not 0.9? 

Edited by member 08 Jan 2018 at 18:39  | Reason: Not specified

Sandy.

It was 0.02 undetectable for 2 years not 0.2. Big difference I know just that my head is all over the place trying to come to terms with it all.

Sorry for the confusion.

Sandy

Never thought of it that way, bone scan at time of Dx was clear but at T3b I guess there could be a chance that cancer could be present and not picked up.

Thanks again for your help as it gives me more questions to ask the oncology. Plus it has perked me up a bit knowing that the HT could actually be working.

Onwards and upwards.

Cheers

Sandy

Latest update, saw my oncologist yesterday and now going for 6 sessions of Chemo starting in 2 weeks. 2 dark areas identified in lower rear pelvic area.

Strange thing though as he had told me it is not in the shoulders as the urologist had suggested. He is a wee but baffled in how the dark areas have got there as my PSA has been steady throughout at 0.2 for 2 years.

Some goods news as he was more optimist about the future, felt as though the urologist had me dead and buried within a few months, 3 weeks of hell waiting for the oncologist.

Plenty of treatments for me yet but hoping that the chemo can help delay any further growths for years. He wanted me to start chemo next week but I'm going on holiday and was going to cancel but told not to as it will not make any difference to the cancer. Hope he is right but I'm sure that he is.

Good luck all in your own battles.

Overall very positive meeting so onwards and upwards now.

Cheers.