Hi, just a wee update. My husband had a PSA of 252 in May of this year and was started on HT immediately (Prostap injections every 12 weeks) he did have three weeks of Bicalutamide first. Bone scan was clear and CT scan showed cancer in left side of prostate gland and a hotspot on lymph node near prostate. Biopsy showed T3 with Gleason (3+4)7. Had first oncology appointment today and he is to start a month of radiotherapy and will extend to take in hotspot to make sure they treat the lymph node as well, first appointment will be to implant gold seed markers then an appointment for planning CT scan then the radiotherapy appointments begin. He did say, however, that due to his high PSA there can be a recurrence so to make sure this doesn’t happen they want to also start him on Abiraterone and steroids, we’ve to go back to see the Consultant next week for results of bloods taken today and sign consent for Abiraterone if we are happy to go ahead with this. He said he is treating him as curative. He said he will be on the hormone injections for two years but I forgot to ask how long he would be on Abiraterone, altho as we are seeing him next week I can ask the Consultant then.
Linda 
Thank you Stuart, it’s all so stressful! The hormone therapy has already been playing havoc with his emotions, some days he is close to tears but he’s feeling a bit better now he has a solid plan, but I’m a bit worried about the addition of Abiraterone as it seems to be yet another hormone treatment although I understand the reasoning with his high PSA. He is keen to start radiotherapy to get it over with but not so keen about the gold seed implants as so far the worst thing for him was the biopsy, but at least he has an idea what to expect this time lol. He is also somewhat perplexed about the micro enemas as it says use half an hour before your radiotherapy appointment but we live an hours drive from the hospital, do you think we could get there early and do it at the hospital ? Any advice gratefully received.
Linda
Hi Linp
My partners on Abiraterone, it’s an excellent drug and has very good results, you can take for a long time and it has low side effects . (This is what our consultant says). It was part of the “Stampede trial” where it was found that if you take it early on as a first line treatment it will really hit the cancer hard and keep it under control giving the taker an extended time. It has only just become available in England and wales on the NHS because it used to cost 3k? A month ( something like that ) but now it’s generic and costs around £60 so it’s going to make a difference for a lot of men. It was and is used as a Chemo substitute in Covid times and for men that can’t have Chemo for other medical reasons. It’s a bit of a wonder drug. The equivalent long used NHS drug is Enzalutamide. which is similar. If Abiraterone stops working at a later date you can move to Enzalutamide, but not the other way round for some reason. (That’s basically all I remember from my research ) My partners side effects to his HT treatment so far are fatigue and hot sweats mainly. That has ramped up since he’s had RT, but he’s trying to exercise more and that seems to be helping. I have done a profile of his journey so far so you may want to read it as your husbands diagnosis is very similar to my partners. At this point I feel a bit wobbly about the direction of where his PC is going and we are not sure what’s happening with it. Has it been knocked back by the RT enough? Is my main fear. He was curative but now he’s “treatable it seems. But one thing I do know is that’s he’s in a much better place now than he would of been without Abiraterone, so don’t worry, embrace it .
As for how long will he take it. We were told initially 18m-2 years and the see where the cancer is. So that should and hopefully be your end point and then you would be monitored I guess. Now we have been told for life so obviously that has its concerns because it brings up the questions of time. There is a point where Abiraterone will stop working. When you may become “castrate resistant/hormone resistant “ and the Enzalutamide/chemo would be a next option. But I have read some findings about “intermittent “ use of Abiraterone and if you come off it for breaks your body will reaccept it as if it’s a new drug and work well again. We’ve discussed this with our consultant and he is of the opinion that it makes no difference either way, but we are going to go down that route after a couple of years, because it can be monitored and in our opinion nothing is lost by having a break. 1. To see what the cancer is doing. 2. To feel normal and drug free for a bit.
Best wishes to you both
L
Thank you Steve. We actually live 5 minutes from a hospital locally but all cancer treatment is at the hospital in Edinburgh so we need to travel so I will let him know they will probably discuss it at the planning scan and he can then do the enemas once he gets to the hospital. I sincerely hope the Enzalutamide works for many years for you but I’m hopeful they are finding new treatments every day that will also make a difference.
Wishing you all the best for the future.
Linda
