Thank you Tel333. When I received my first dose of hormone it took about half a day before I began to feel the effects. It started with the night sweats. I literally had the sweats every couple hours and had to stand in front of a fan to cool off. These lasted daily for about 2 weeks then tapered off and now only get them maybe once every 2 weeks. Then came the emotional effects right on top of the sweats. I would just stop and begin to cry over even the simplest of thoughts. I found it hard to control and it was easier just to allow it to happen. It was happening at least 6 times a day at first then it also tapered off. I now get these only about once or sometimes twice a week. Tiredness as well, which I still have and joint pain. I have arthritis and the drug (decapatyl) causes it to flare up and amplifies the condition. Weight gain is another side effect I have as well. I watch what I eat and stay as active as I can to limit weight gain. Trouble sleeping as well and up every few hours to use the toilet. With regards to the radiotherapy I ended up 9 months later getting Radiation Proctitis. It’s inflammation of the bowel from the radiotherapy. It’s like having really bad IBS or colitis but it comes and goes. Sorry I know what I have described sounds horrible but I am alive and that is what really matters. I found talking about my cancer openly helped me adjust to the side effects because I realise I am not alone in this journey. The road I travel with the cancer isn’t just mine….its ours and the more we talk the better the supports we have for each other. 

Thank you Mac211. I already suffer from PTSD so this does worry me in all honesty. Take Care. 

Ex forces so I also suffer from PTSD. Just keep talking and asking questions. Take care

I wil , many thanks .

Hi Guys , I’m new here .. I was diagnosed just over 2 weeks ago , Enlarged prostate ( I was running to the toilet and only a trickle ) had the tests … T3 stage 9… I had a bone scan last Thursday awaiting results and options from the Team next week. I too suffer with PTSD Anxiety and Depression as just going through a nasty divorce too… just what I need right now … Am I right to assume they’ll probably take out the prostate and I’ll get the treatment you guys are having ( as long as it’s not spread further that is ) I’m 53 and in pretty good shape …. I’ve just finished a 72 hour fast and trying to steer clear of sugar .. do you have any tips from your experiences please? 

Hi, I’ve just started on Hormone treatment in the last week so can’t really comment on experiences yet. From what Im told it can vary from person to person depending on many factors. Keeping fit and active though is very important.
Im assuming you mean you have a Gleason score of 9? I’m in the same position. If so that  unfortunately suggests a higher level of aggression and that is why my Oncologist has put me on Hormone treatment straight away. The purpose of hormone treatment is to stop the production of testosterone which feeds the cancer. You haven’t mentioned if it’s still contained within the Prostate or spread outside for instance into the Seminal vesicles. If there has been any spread i wouldn’t assume you will have surgery as in my case it was too far along for that option.

Interested to know why you’re fasting  for 3 days? 

Hi E123. Im a stage 3, Gleason 9 as well. Been on hormone for a year and a half now. My cancer is aggressive but contained. I started out March last year with a PSA of 402 but the hormone treatment and radio therapy has brought it down to minus 0.2. Surgery is not an option. It’s important to stay fit and exercise when you can. Hormones effect everyone differently and it depends on the type your on as well. I find tiredness, hot flushes and emotional outburst seem to be consistent from the beginning. I have PTSD as well due to my service time but if I can give anyone any advice it would to be open about your cancer and talk about it. 

I had the bone scan to see if it’s spread anywhere else … waiting for the results which I’m a bit worried about.  With regards to the fast , I’ve just had water , bone broth and electrolytes. I’m up for trying almost anything to slow this down until I begin treatment etc. I’m going through so much S4i7 at the moment and I’m doing this for my 10 yr old amazing son. Cutting sugar out as much as possible and changing my diet to help me as well as knocking alcohol on the head and taking gentle exercise . I’m doing as much as I can as I imagine the NHS are too. I think you’re right about talking to people as it does seem to open up the windows of positivity. Thanks for your reply and comments, I wish you and all here the best and stay strong and safe x

Just keen to know why surgery isn’t an option? Is this your choice buddy ?