Advanced metastatic PC

Hi Polly1912 

My Dad was diagnosed with advanced prostate cancer in December 2024. I don’t know the exact number but he has bone mets (in his pelvis, spine and a ‘spot’ in his ribs) and the biopsy showed it was Gleason 7 (4+3).

My Dad was given a short course of bicalutamide and now has a 3 monthly Prostap injection and takes Abiraterone daily. He was monitored closely to begin with as the drugs elevated his liver ALT levels but this sorted itself within a month or so. I believe he will be on Abiraterone until it no longer works and then the next step will be chemo. He did ask his consultant if it was best just to go straight for the chemo but he didn’t believe there would be any benefit to doing this just now given his gleason score, spread and the fact that my Dad wasn’t suffering any of the typical issues/symptoms of PC before his diagnosis (besides some back pain which has now resolved). I didn’t understand why we weren’t throwing everything and the kitchen sink at it upfront (and some days I still question the same) but I guess you have to trust they know better than us (which I’m sure they do!).

So far he hasn’t suffered too badly with side effects. He has had some hot flushes (these were definitely worse in the first couple of months) and gets tired much quicker than he ever did. He is trying to maintain a good routine with exercise and is still managing to get out on the golf course with his friends although he feels the pace afterwards. I’ve read that exercise is one of the best things you can do but there is definitely a balance. His PSA had come down from above 60 to <0.3 at his last blood test c. 9 weeks ago.

I’ve come across a couple of people on the forum who are in a similar boat but don’t know their handles to tag them. We are based in Scotland and it looks like this approach is more common here than down South due to different approved uses of Abiraterone but hopefully you get some responses. 

Hello Daughter93 , your dad's story is quite similar in terms of treatments options and his symptoms, we are in Scotland too, started degarelix and Abireratone has been mentioned for discussion with oncology team at the end of the month. 

Like you, I wanted everything chucked at this as I believed that would be best, but considering my partner has no symptoms, he did have bone pain which has gone since starting the degarelix, its makes sense not to put chemo into the mix at the moment. 

Your reply has been really helpful, thank you, I wish you and your dad all the very best️

 Polly1912  yes it sounds very similar. It was a long, tough couple of months going through the diagnosis process and whilst we have settled into a new “normal” of sorts, we all definitely have our days or moments! There’s been some adjustments but my parents are trying to live their life as normal and the oncologist advised there was no reason for them not to. I’d love them to take a break and go on a holiday but I don’t think my Dad is quite ready for that (mentally more anything).

You too, hope you get some answers and the treatment path sorted soon ️

The new normal is taking alot of getting used to, we are usually full of positivity, however, sometimes we just sit and look at each other "f#%k we have cancer"!!!! 

My partner had 2 holidays booked before diagnosis, trip to eurodisney with his son which i was really worried about, but he went and enjoyed it, just tired more easily. We have also just returned from a few days in Munich, however, this trip was more emotionally draining, we weren't ready for it. Also we couldn't get insured reasonably so "risked" it using the GHIC card and our existing policy. We are due to go on our annual trip to Benidorm (Our guilty pleasure) in september and will be taking proper insurance, I feel this holiday will be a little different than usual, but this is our annual jolly with friends and its important to keep these things going. 

We want to travel as much as possible! I hope your parents get away soon when dad is ready, we will also plan wee trips in Scotland, enjoyed a weekend away in Stonehaven just after diagnosis and that was very much needed ️