Just saying hello and asking for advice.

Hello Norman, I can’t speak for everyone else but my husband started hormone therapy last November and had radiotherapy in Feb and March this year. He has been discharged by urology and remains a patient of oncology. He does get tired and sometimes very low in mood. He also has sweats from time to time and is like somebody with permanent jet lag. I hate what the ht is doing to him but I fear that once it is stopped the cancer might return. He has 6 monthly PSA tests a week before a telephone consultation with the oncologist. 

If your cancer is not evidenced in PSA levels then it would seem a PSA test would not really show anything? I don’t know enough about the medical management of such cancer but my own thoughts are that if it were my husband I would want proper follow ups for him  by the medics to ensure everything is going to plan and for our reassurance.  Perhaps your GP could remind urology of your existence or you could contact urology yourself?

as an afterthought, could it be that your appointments might be delayed or postponed due to the doctors industrial action and the pressures on hospitals?

thanks for your reply. I occasionally have a hot sweat as well and I think we all have mood drops when we thinks about what we are going through and what lies ahead of us.It certainly knocks the stuffing out of you.I think we are all worried about our cancer either returning or spreading, it's only natural.

Regarding the PSA level, before my treatment it was around 1.4 and now is down to  less than 0.01 so I'm taking that as a positive but as you say, I need to follow everything up with either my GP or the Urology people.

I know the NHS are vastly underfunded and are still trying to catch up after the pandemic so maybe that is the reason for no action but I will follow it up.

Once again, thank you for taking the time to answer my post, I really appreciate that. Good luck to your husband in his fight and all the best to you. I'm sure you will both win this fight. 

Hi N

Initially a couple of questions.

Do u have a Gleeson score.

Has PSA always been under 3

Regards

Steve 

Hi Steve,

My Gleeson score is 5/5, my PSA has always been under 3. I was informed my condition was treatable but not curable.

Ok thanks.

Some of the more aggressive cancers do have a low PSA.

They probably wouldn't do any more scans but will leave it down to the HT to do it's job although u could alway push for one anyway.

There is another post on here talking about a newish drug for advanced cancers , Olaparib.

U may already be on it but if not could be worth asking.

Best wishes

Steve 

Thanks for your time and advice Steve. All the best to you as well.

Best Wishes

Norm.

 nurmanman 

Hi Norman. Everything you have described are the normal side effects of HT & RT. You seem to be unlucky to have them all. I was diagnosed with an aggressive Gleason 9 with lowish PSA (11) back in 2018 and had 3 years of HT and 20 sessions of RT. I had serious fatigue following the RT but a group of friends formed a rota and made me go for a walk every day. At first it was just a few hundred yards but we were soon going several miles. Exercise is the best cure for the fatigue.

I found Sage capsules and Evening Primrose Oil both helped a lot with the hot flushes, you can get both from Holland and Barrett.

Sleeplessness is difficult and I still suffer from it nearly five years down the line. My GP has prescribed Zopiclone, but strictly no more than two a week, so I do get a couple of good nights sleep.

Weight gain is also from the HT and can only be conquered by strict diet. That of course is difficult when you're comfort eating! Please also be aware that HT can cause a rise in HbA1C leading to type 2 diabetes. Not many healthcare professionals seem to be aware of this so will not do anything. Next time you have a GP appointment you should ask for a test. 

I am now two years past my last hormone injection and my PSA has been stable at 0.2 for the last 18 months. At 76 I walk at least 30 miles every week, swim a mile twice a week and go coastal rowing as often as the wind and tides allow.

Good luck with your journey and please let us know how you are progressing.

Hello Nornan

Welcome to the Prostate Cancer forum - we are a friendly bunch.

Seamus47 has stolen my thunder and said just what I would have said. In a nutshell Diet and Exercise.

I wish you well on your PC journey and Seamus said please keep us posted as to your progress.

Best wishes - Brian.

Wow, what a great answer Seamus. It's really encouraging to know that we are all going through the same experiences/emotions. This was certainly a confidence booster and I thank you dearly for that. I love my walking and have spent many years walking the Lakeland Fells and I think I'm finding that is the biggest problem. I still get out most days and have a 'stroll', even if it's only a short one. I love photography as well so that is always a spur and good excuse to get out. Once again, thank you for your reply :-) 

Thank you so much for the good wishes and advice Brian. Everything I've  seen on this forum so far has been positive and delivered with so much knowledge and kindness. All the very best to you :-)