Hi, Firstly well done on finishing your treatment, hope you feel much better. I am in the same position and wondering about the Hormone treatment. Can you say in what ways it affected you . Thank you. 

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. 

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 ? 

No. I was told after my biopsy that my cancer was inoperable due to how aggressive it was. No guarantee they could remove it safely and completely. I have to say that the early hormone treatment most likely saved my life. I had an early cancer care nurse who basically ran to the hospital pharmacy and gave me my first 30 days worth of hormone tablets right after the biopsy in the recovery room. Been getting 6 months injections after that. I think the hardest part for me was the fact I loved to run and work out but the drug made me tired and the loss of testosterone caused me to have a more difficult time working out. I traded running for walking and I reduced how many days I did weight training and took to more low impact exercises. Had a real grip on it at the start but recently I begun to develop the middle age spare tire. Harder to get rid of due to the hormone but I’m giving it a go. No sugar is good. Have you had radiotherapy yet?

Not had any treatments yet ..Sorry to hear it was inoperable but the good thing is the speed of which you got your hormone tablets … I’m glad they’re tablets as I have a needle phobia which has almost made me pass out in the past. This really does sound like testing times ahead but it’s good to hear your still in the race and doing good.

Good morning E123 and welcome to the Cancer Chat forum. 

I'm sorry to hear about the diagnosis that has led you to find us. It's understandable that this is a worrying time for you and natural that you want to do all that you can to improve your health. 

It's good to hear that you've already made some positive changes by doing more gentle exercise and reducing your alcohol intake. I wanted to send you the links to the information we have on our website about cancer and sugar and also about fasting. 

If there's anything that you want to talk through with one of our team of cancer information nurses you're most welcome to give them a call. I know they will be happy to listen and offer any advice, information and support they can. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

I hope that the specialists have all the information they need to discuss treatment options with you soon. Keep in touch E123 and let us know how you get on. 

Best wishes, 
Jenn
Cancer Chat moderator 

E123 I took tablets at the start but my 6 monthly is an injection in my backside. I just felt that it was easier and required less thought on a daily basis if I went for the 6 month injection. However there is a 3 month and tablets. They understand everyone is different. I used to be told I was a hero for serving my country and I don’t think otherwise but I truly believe those in the NHS that help me fight this horrible disease are truly unsung hero’s. The doctors, nurses and technicians went to war on my cancer and beat it into submission and for that they will always be part of my family. I know we can’t look around every corner but just keep talking, asking question no matter how trivial you may think they are, part of the battle is mental health. 

That’s absolutely brilliant to read  Mac211 Thank you so much for your reply, you really have lifted my mood and spirits this morning reading this. Keep up your Great work mate x 

E123 you’re very welcome. Have a great day. 

E123 you’re very welcome. Have a great day.