Please help

Hello Shar. I can only tell you what we have experienced but perhaps it might help? Once a treatment pathway had been decided he was given a prescription for 28hormone  tablets by our nhs hospital urology department. He was given a letter to take to our gp surgery requesting the hormone injections be given there. I have a friend whose husband had private care but still had his injections at his gp surgery. I’m sorry this is very vague and might not be the same experience everywhere but I hope it helps to have some sort of reply because you sound so very worried.. ( I remember so very well the panic I felt in those early days!)

Thank you that does help. I can't think straight, I am not eating or sleeping but trying not to let husband see so I am worn out pretending to be ok. We have got the prescription for the tablets ready for him to take and it is for 28 days. Do you know how often the injections happen and how often, we have been told nothing 

Hello Shar. Following my diagnosis the first Prostap injection was given at hospital and then passed on to the nurse at our G. P. surgery every 3 months. My contact was the cancer coordinator nurse who can be contacted direct and relay any concerns which again that info. was given on diagnosis. Ask Urology if there is a coordinator. 

With best wishes, Graham. 

Thank you so much  I will contact urology now

Hi Shar  and welcome to the forum where nobody wants to be.

Firstly, Prostate Cancer is generally slow growing. The tablets are probably Bicalutamide which will immediately slow the cancer and will stop a "flare" once the hormone injections start. It's very hard to say how long he will be on the HT as everyone is different. I was on Prostap injections for three years and had my last one two years ago in June 2021. I had all my injections at the GP practice.

I also had 20 sessions of radiotherapy in Feb/Mar 2019.

It will help us to help you if you can add any stats to your profile once you have some test results.

Those are the tablets, he was told gleeson is 9 and something about tb3 n1 mo but don't know what this really means 

Hi Shar  It would probably help you if you go to the Prostate Cancer UK website and download the brochure "How Prostate Cancer is Diagnosed". This link: https://prostatecanceruk.org/media/2499098/how_prostate_cancer_is_diagnosed-ifm.pdf

When diagnosed in 2018 I was Gleason 9 but T3A N0 M0. The N1 in your diagnosis means a spread the the seminal vesicles, but M0 means no metastases so still confined to the pelvic area.

I was 71 when diagnosed and offered a choice of surgery or HT/RT. I chose the latter path as I am very active and was told that surgery could leave me with "stress incontinence" when exercising. I was on HT for three years and had my last Prostap injection in June 2021. My PSA has been stable at 0.2 for 18 months and I have my next PSA test this Thursday. Provided it stays below 2.0 I am considered to be in remission and the Urology department will just continue with six-monthly PSA tests for another two years. After that it will be annual tests until I am 10 years post treatment.

I hope that helps.

Hello Shar, the injections my husband has can be given as a one month dose or a 3 month dose. He had the first injection of one month dose on day 14 of the tablets. As he tolerated the one month dose he was then changed to 3 month dose. He prefers this because it’s less ‘messing about’!

re your own well being. I was in a terrible state and cried solidly for 6 months! Every time I spoke to anyone, I cried!  I think a lot of this was due to fear for my husband and what he was going through and also because we had a really torrid time with our urology department resulting in a formal complaint. Once we were passed from urology to oncology we were absolutely worn out and worn down but all I can sat about our oncology service was that they were absolutely fantastic. The staff were professional, caring, supportive etc. everything ran to time and plan - apart from the dat they opened up the department on. Monday morning and found a burst pipe had flooded it! That, of course, was just one of those unforseeable events but, again, they were very quick to cancel that days appointment and rearrange. 

I do, though, vividly recall the prostate cancer nurse specialist’s words. She said, ‘you will take your first tablet today and today the cancer stops growing’. That was reassuring. My husband had to be on hormone therapy for 3 months before having radiotherapy. That seemed a very long 3 months!

the hardest thing for me is that my husband seems to have aged tremendously since this all started and I am constantly having to ‘watch out’ for him. He forgets things - something he never used to do.  It’s like he’s got some sort of brain fog and I blame the hormones. He also tires very easily. However, I look on this as part and parcel of what we sign up for when we get married and it’s worth it to still have him playing a very important role in our family life!

I hope you can manage to get through these stormy waters and gradually can get accustomed to the seismic shock you have both received. The diagnosis turns our world upside down and it’s all so frightening but, if you are anything like me, you soon realise you can make the best of a bum deal ( pardon the pun!)

keep posting here, if you can. I found the kindness and support I received was a massive help!

Thank you I really appreciate your explanation 

Thank you it is a wonder I have any tears left, thank goodness for waterproof mascara and I can wear my sunglasses in the sun so husband can't see my red eyes. Everyone on here is lovely and are so helpful. So glad I found this site