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.

First session of chemo done (tuesday) and dusted with no major side effects as yet.

Only some aches and pains, almost as though you have been stung with a bee, smell is like metallic or burning plastic, so strange.

Going to carry on with my job as I have been given the green light to carry on working with no restrictions and it is down to me.

So it's 1 down and 5 to go.

My only concern is the letter from the Onco states it appears to be some cancer at pelvic area but doesn't actually state it is, I know it probably is though and will discuss with Onco next week.

Onwards and upwards

Hi Sandy,

Just been reading your story. I hope the chemotherapy works for you. I notice you are been treated at the Beatson - and me. Is Rob your consultant? I always feel lifted after a chat with him.

All the best

Dave

Oops, wrong Beatson Sandy. I’m being treated at the Beatson West Of Scotland Cencer Centre in Glasgow.

Dave

Hi Sanders thanks for you update on chemo. Glad to hear it’s not been so bad for you and is tolerable. Whilst I’m still behind you on treatment , I was told at 50 that I may have roughly 6 years , but it’s all up in the air at the moment. We are enjoying life in some ways more than we ever have. Lots of treats meals and holidays , but mostly restricted by having an 8 yr old son who may be the biggest victim of this s**t disease. I hope things pan out well for you and try and stay strong. I know it sits on your shoulder each day but staying busy helps me ignore it. I’ve struck a balance between part time work and a new hobby of RC cars. Keep well

Sanders I hope you get some reliable independent financial advice while you decide what to do with the remaining years - for example, weighing up whether you would be better dying in service or drawing down pension lump sums early. We have spent a couple of months doing this as John's death in service grant is 5 x annual salary (a significant amount of money to give up) but the pension companies can offer enhanced deals if the person is unlikely to be drawing a pension for 30 years!

I have started the ball rolling with regards finishing up and also looking at my pension. I may opt for a draw down pension as this gives me my pension pot but need to do this before I reach 60. My wife will get a good pay out if I die in service but once I leave service this dissapears although she would still get a pension but the lump sum would go into the pension companies fund. So better to take what I can now so areas I can enjoy it and my family is taken care off. I asked the consultant about my future so that i could start putting thongs in place. Thanks for all the advice.

Sandy

Hi all.

Long time since I posted, hope you are all staying strong and still fighting. Just thought that I would update my story.

Anyway I have had my chemo, which finished at the end of July. Was previously given 6 treatments but seeing as I was doing well my consultant decided to give me another 4 sessions of chemotherapy. And would you believe it I ended up in hospital for a weekwith pneumonia, so my chemotherapy ended there.

My next appointment is in a couple of weeks with my consultant. Since I came off the steroids I have had a few dark days but still feeling upbeat.

Have set my future, going to retire in 18 months so I can enjoy the rest of my days. Consultant has told me that it's very unlikely that I would see my pension so time to finish work. The thing is that I phsyically feel good, I've even took up golf. 

Like the saying goes, don't judge a book by its cover.

Take care all.

Hi all,

I have a wee question, has anyone had a penile prophsis (implant). I'm going to see a consultant tomorrow to discuss it after being referred by my ED nurse. Just wondering if anyone has any experience of this, is it successful etc.

I had a RP 3 years ago with no nerve sparing, followedf by RT and Chemo. I have tried the pump and caverjet with a little bit of success. 

It's going to be some conversation tomorrow.

Sandy