Hi again.  Just curious why the suggestion was not to have Chemotherapy ?  And how did it come about that your husband had a PSA test?  Hope the biopsy has gone well. With a PSA of 768 I’d be interested to know the Gleason score. It took me a couple of weeks before the expected ‘blood in my urine’ stopped - but there was very little colouring.  

As an aside, on one American cancer site there was a person interviewed who had a PSA of 1150 some 25 years ago - he was now 75. So there is hope for an above average outcome. 

Hi the reason he had a blood test is because he was going to toilet 3 times thro night which he has never done in 34 years so he went to doctors they did bloods then a examination of his prostate which was hard and bigger so so far when we was told he had advanced prostate cancer he had injections the same day which is degaralix he has to have them every month the last week had CT scan and bone scan then today biopsy that's all we know for now no chemo was offered as yet 

Getting up to the toilet was my issue.  However, while it was only once a night it was very unusual for me and regular. This started in May/June 2022.  When I saw the doctor in September 2022 and asked for a PSA test because of it, the female doctor said she thought it was unnecessary and to monitor it.   As nothing changed over the year I wondered if it may be a kidney issue.  So last September I booked a Health Check with the surgery nurse and specifically asked for a PSA test. That’s how I found out - I could and should have found out a year earlier.

Sorry if I repeat what I have written before. However, it seems that the procedure is to get a patient on immediate ADT. My start was with Bicalutamide for 14 days which works to reduce testosterone.  Then a rear end jab of 3.5mg of Decapeptyl good for 30 days for the same. It seems that this jab increases testosterone to being with - hence the Bicalutamide to start. My next jab was on December 1st and is good for 90 days.

From what I have read about chemotherapy which is part of a Triplet procedure with Darolutamide, a procedure that started in 2022, this has to start at three months after a patient initially starts on ADT - check out Chemotherapy on the Prostate Cancer UK website and Google ‘Triplet cancer prostate’

There are several different ADT drug names that do the same thing, so it looks like alternatives are used across the NHS. 

This is worth reading

https://prostatecanceruk.org/prostate-information-and-support/get-support/our-specialist-nurses/life-on-adt-classes

Thank you for your messages it helps alot its the not knowing now for us it's the worst thing how are you doing now

You likely know that a normal PSA is quite a low number.  The following is what I understand. If PC that starts in the prostate is contained within the prostate the science seems to be to use ADT to stop testosterone production and monitor a patient over time. Before actual diagnosis and if PC has already escaped from the prostate ( as in my case ) each area where is has established starts to create its own testosterone and hence you get PSA at a higher number. If ADT works you are castrate sensitive and if not you are castrate resistant.

While ADT treatment does work to reduce the PSA level, as I have experienced and therefore am castrate sensitive, the cancer cells outside of the prostate are likely to still create testosterone to feed on. This is why I have chosen to have chemotherapy along with the latest ADT drug called Darolutamide. I read that the chemotherapy is supposed to find and attack all the PC ️cells in the body, but will not necessarily get 100% - some minute bits will be missed. A person can just chose one of the four newer drugs, of which Darolutamide is one, but recent science research apparently shows much better results with Darolutamide and Docetaxel ( chemo ). I feel that I want to kill off as many cancer cells in my skeleton as possible and hope that I can tolerate the chemotherapy ok - six sessions three weeks apart - but I haven’t started yet - waiting to hear. 

Again, my understanding is that over time a person will become castrate resistant and at this stage one of the other three newer drugs would be used along with possibly more chemotherapy, but using a different chemotherapy therapy treatment ( Jevtana is one of the names for it ).  Keep in touch. 

i will keep in touch hope all goes well for you we know nothng as yet till january its the not knowing thats the worst thing ,do you have any pain or are you unwell at all,my husband has a pain in his side that has now gone but gone round to is back  but he thinks he has pulled a muscle 4 weeks and its taking time to heel 

Your husband’s suggested treatment will all come down to the Gleason score and results from the CT and Bone scans. My PC seems to be throughout the bone skeleton and hence the treatment I’m on - not curable but hopefully manageable. I had a call today to start chemotherapy on January 8th. I have no real pain and am not unwell. I think that being on the ADT has disturbed the cancer cells as I have been getting the odd twinge in my shoulders, but I may have had them before and thought nothing more than ‘ that’s from lifting something’. It’s not worth worrying too much as ‘it is what it is’ and there are life extending treatments, with cancer drug trials taking place all over the world. Hope that you can enjoy Christmas even though it’s always in the background of thought. 

Thank you hope you have some support IE wife or family you try have a good Christmas take care speak soon

Hi there how are you doing with your chemo how was your christmas ok i hope ,my husband has had his results and the cancer has spread to his bones but just from his neck to his groin not anywere eles he has had 1 testosterone injection and from his PSA been 776 it has dropped down to 81 thats just after 1 injection we are amazed how much it has dropped from just the 1 injection we go on the 6th of feb to talk about treatment for the bone cancer..