Update

FYI. My OH gets his 1st consultant appt 6th August which will be 140 days from referral 

Hi Millibob,

Mr BW was on a "curative pathway" initially.  (even with full seminal vesicle involvement) I think T3B sit's on the line where curable meets treatable and could go either way. What can swing the balance seems to be a high Gleason with a high PSA and the statistical possibility of metastatic action with that. I believe over 100 PSA is an 80% ? chance of spread.( you must have fallen into the 20%.) Also I think it feels like TB3 is the place where boundaries will be pushed more with modern treatment for cure. Hitting it hard early seems to have good results. -Triple therapy with chemo and pre emptive full pelvic Rt will make a difference to pushing that line . I know Mr BW is now incurable, but I still harbour hope. I think we are very lucky to be living in this time with PC and new treatment combinations coming through that can make a difference. My favourite at the moment is the work being done with Immunotherapy. 

L

Yes I agree 100% T3b is very curable with a low Gleason and low initial PSA. i am all for pushing any T3 for treatment to start as soon as possible because you are on the very cusp of the cancer going "walkabout".

I am a "lucky boy" as I ended up in hospital with kidney failure - caused by the enlarged prostate. My urology consultant even before the MDT meeting and the biopsy results were known started me off on HT so much so that i had my first implant at the MDT meeting. My initial prognosis was "advanced prostate cancer" with HT for life.

After 10 months of living with my catheter and then the TURP operation oncology took over - I am under Christies the specialist cancer hospital in Manchester. Because of my high initial PSA I was seen by one of the top PCa oncologists. She reviewed my MRI and CT's and decided what could have been cancer on my spine and pelvis wasn't and just to "zap my pelvic lymph nodes as well as my prostate and to reduce my HT to 3 years.

I am fully aware that once off HT my PSA may well rise and I am on 6 monthly lifelong testing at Christies. I know there are further "tools in the box" to quote Alwayshope. - as the Doris Day song goes "que sera sera"

Mentally I am up for any future challenge - my body has taken a hit wit the HT but it's not going to get the better of me.

I know Mr BW is incurable but you both have come through to where you are with amazing courage and I find your continued support on the Community to be fantastic. Like you I keep my eye on all new trials and developments and I am sure at some point in the future we will find the key to beating this basta*rd!

Kind regards and best wishes to you both - Brian.

Thank you so much for your kind words, Sometimes I feel I could actually pass a degree in prostate cancer now, if there was one as I've been so proactive with fighting this fight alongside Mr BW. I spend hours trawling for answers and pushing open doors especially at the start for treatment. Things do need to change at the diagnostic stage. I felt that we were being treated the same as a low level cancer at the start, we were in a system that wasn't always alert to the top end of men that needed fast attention and treatment. This trial thats happening sounds really good, but I personally think it's not right to have men hanging about waiting for it to start though. I hope that it is for men that have more of a slow growing cancer in the gleason 7 area.

I'm Banking on you @Millibob to stay firmly in the cure zone, My beacon of light x

L

Hello L

like you, I am avidly watching for developments in cancer care and hoping there will be a massive breakthrough at some point. Yes, immunotherapy is a potential but I have also been interested in the trial of using the vaccine MRNA. technology for attacking the cancer genetic code. This has not been broadcast as a treatment for prostate cancer but it’s a start! Where will it lead? Probably not quickly but perhaps for following generations?

my husband is the 3rd generation with prostate cancer - after his father and his paternal grandfather. I think of how each generation was cared for : grandfather died of kidney failure due to the cancer blocking the urinary system - we think , we were never told a diagnosis ; father - diagnosed in similar circumstances to our beloved Millibob and then offered the first  (and only ) line hormone therapy and had an extra 3-4 years;  my husband monitored for several years then RT, HT, scans etc etc and a glimmer of hope for cure. The next generation - our children - considered at risk and offered annual checks. It’s improving all the time.

BW said:

I'm Banking on you @Millibob to stay firmly in the cure zone,

I am working on it - I have a vested interest!!

Thank you Brian your so knowledgable x

Hi WW

I like the sound of something new to research, that will be good for the wee hours when I'm awake!  Yes! our son will have tests at 40, but hopefully by then every man will have the same. It's so ridiculous that men in the UK can die with one of the most slow growing treatable cancers! (if not caught early)  I just can't get my head round it, it's wrong.

L

Here is a starting point for PARP inhibitors which is another option. This ties in with the genetic work that is being done. At the moment only 2 have been approved but I hadn't realised how many were being trialled until I read this.

https://www.frontiersin.org/journals/oncology/articles/10.3389/fonc.2023.1159557/full

I know the feeling of trawling the internet in the wee hours BW looking for the plan D E F G. 

Nicey . Thank you AH 

Lx