Posted 12/11/2019 10:13 PM (GMT -5)
Hello all,
I have not posted for a while but have been reading other posts with interest. My husband had his specialist appointment on Tuesday, so thought I would update, particularly for those who had/have a high gleason score at diagnosis, and chose ADT and High Dose as well as external beam radiation.
My husbands PSA is still very high, however, he has chosen not to take anything to decrease the numbers. He had been on Eligard injections but these interfered greatly with his thinking, reasoning and memory, so two years ago, he had chosen to stop ALL treatment. This was mainly due to the fact that although PSA continued its upwards climb, he actually felt quite ok. When the oncologist asked him, "If you didn't know you had cancer, would you know you had cancer?" The answer was no. No illness, no urinary problems, some erectile dysfunction, but lots of fatigue.
PSA taken every 3 months over the last year has gone from (approx. numbers), 8, 11, 15, 15, 26, 22, (last week was 23). Husband states, "it's just a number, it's not how I feel".
My husband is a great believer in exercise, and I believe in listening to your body. So our ideas meet half way. He goes to the gym daily during week days, but if he is too fatigued, I suggest he had a rest day.
So, if YOU have had a grim diagnosis, and things are not looking crash hot at the present, take heart. With a gleason score of 9 in nearly all of 12 core biopsy, spread beyond the prostate capsule, margins not entirely clear, ADT, then High dose Brachytherapy, followed by external beam radiation, melanoma, open heart surgery, and now a suggested diagnosis of Lewey Body Brain disorder, husband is actually doing very well. In fact, he has just choofed off to the physio as he injured his back during weight lifting a few days ago. Tonight he will enjoy a few glasses of red wine, have a very hearty meal, watch every news programme known to man, have a few squares of dark chocolate, then will retire about 9pm and sleep soundly will about 8.30 am, only getting up once or not at all during the night for going to the loo.
If HE is ok, so will YOU be.
Best wishes to you all.