Confused About Treatment

Hi

Advice we can give, but we are not doctors, just people who have had different treatments. I’am a Gleason 9/10 had a PSA of 893 with spread to the bones assorted places. 
looks like the enzalutamide is doing its job, I’am now on this after five years of being diagnosed. If I can ask was chemotherapy not offered ? Radiotherapy helps greatly in reducing the size of the prostate, I would be asking if they said a year why had this not been offered and also people like us are usually given hormone injections Prostap in my case for life.

The breathless is just getting used to the medication, but does need to be kept an eye on, sleep I can fall a sleep at any time, not for long ten twenty minutes but again it’s getting used to the medication.

I would be asking the head of the team what are the plans going forward, ( I always ask for a plan B what’s the next step. ) try and get a positive answer, you’ve spoke to different people and got different answers each time. Try and find out his secretary and phone her if you cannot get him to phone or answer you, being a nuisance can get results as long as your not offensive, have a set of questions ready when you phone.

Hope this helps.

stay safe

Joe

Hi Joe Thank for your reply.  To answer your question, no he was not offered Chemo it was not even mentioned but I understand that Enzalutamide was approved by the NHS only last year in the UK and is given instead of Chemo for people with advanced prostrate cancer because of Covid.  I am going to mention it at the next phone call.  Radiothereapyy was mentioned and the situation is as I described in my opening post. Just to be clear the Oncologist did not say that he only had a year to live, he said when pushed that the Enzalutamide would work for about a year but after reading several stories including yours that it will work for much longer. He does have a three monthly hormone injection, I missed that out on my original post, he is on decapeptyl.  I am reassured that you are doing well and wish you the best of luck.  

Hi Rosie, interesting post, I was diagnosed in January with advanced prostate cancer, spread to lymphs, seminal vesicles, and extensively to my bones, Gleason 4+5 I was told an operation was not advisable, and immediately put on 6 monthly decapeptyl injections and enzalutamide tablets, which are working very well as my PSA is 0.04, my oncologist said I would be on them for life. I agree with joe ask questions, I write them down as I think of them. Don't let the oncologist talk to fast or fob you off, after all it's our lives not theirs.

All the best. Ulls

Hi 

Please remember your not on your own, ask us anything, start a new blog if there’s a new question, just keep in touch. I know how difficult it can be at times.

stay safe 

Joe