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User
Posted 06 Oct 2025 at 14:42

I was diagnosed with prostate cancer in July, was given the option of surgery or hormone /radiotherapy and was nudged towards the latter due to lung issues. 

I started bicalutamide and was to move to an implant, then start radiotherapy after 3 months. I was given lots of leaflets.

I then had a bone scan (no sign of it spreading) and CT scan to check abdominal lymph nodes (no results given). Since then, radio silence. No psa or liver function tests. Still on bicalutamide, no checks on how I'm doing (fatigue and breast soreness are issues I'd have liked to talk about). No word of the implants. 

I've got my planning scan in a few days and radiotherapy starts at the end of the month and I'm worried that I'm not ready because I'm not on the implant yet.

I feel pretty isolated. My wife was in a rtc 5 years ago and received brain damage, so I can't really talk about it with her. The specialist nurses phone just rings out and the email seems unmonitored. I only moved to my current location last year and don't know anyone that I'm comfortable sharing with. So I guess I'm reaching out for advice and reassurance that I'm still on course? 

User
Posted 07 Oct 2025 at 01:02

I had RT and hormones about 7 years ago.

As you are still on bicalutamide, then you have had about four months of HT and you should be fine for starting RT. The implants are a different way of delivering HT, but as far as the cancer is concerned either way works.

PSA and liver tests are not necessary at this stage, and if something ain't necessary, it is not going to get done on the NHS. Though it would be nice to have the CT scan results, no news is good news 

Sadly in today's NHS you need to manage your own treatment. 'the squeaky wheel gets the oil' describes the situation well. If you don't complain you will be ignored. I would suggest you ask for an appointment with your GP to talk about the breast pain and fatigue, it will then be obvious to him that it is the HT and hopefully he will write to your consultant to address this. 

The side effects of the implants are different to the side effects of bicalutamide, so you probably should make a fuss about switching from one to the other.

You're going to have to keep posting on here if you want help. None of us are medically trained, but we can probably point you in the right direction for what questions to ask the specialists.

Dave

User
Posted 11 Oct 2025 at 11:40

So, had my planning scan yesterday and everything went well. The staff couldn't have been nicer and reassuring.

While there, I found out about 'Maggie's Place', a charity organisation set up specifically to address the needs of cancer patients outside treatments.

https://www.maggies.org/our-centres/

Had a lovely chat and they have a local support group that I can join. So for anyone else out there feeling a bit lost, I'd recommend them. 

Thanks to everyone for your support and kind words. 

User
Posted 06 Oct 2025 at 23:44

Hello, mate.

I'm sorry that you've joined the club, but welcome to the forum.

I had surgery and don't know much about radiotherapy and hormone treatment.

I'm replying to bump your conversation. You mentioned feeling isolated and forgotten about, and I didn't want you left thinking that noone here was responding to you.

 

User
Posted 07 Oct 2025 at 11:10

Thanks for the response.

When I was given my diagnosis, I was sat with a nurse and given loads of information - probably a bit too much, I remember feeling a bit overwhelmed. I was given a folder that included a list of nurses and I felt that I was going to be cared for. The reality is, they're all too busy, underfunded and overstretched.

I understand what's going on but I would've really appreciated a phone call to ask how I'm doing.

Thanks for the reassurance about the HT. I guess if there are any issues, it'll be picked up by the planning scan but I feel a bit easier about it knowing both paths lead to the same destination. Thanks again! 

User
Posted 08 Oct 2025 at 07:40
I find out local prostate cancer nurses respond effectively BUT slowly.. I usually leave an answer machine message and they get back to me in a few days time.
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User
Posted 06 Oct 2025 at 23:44

Hello, mate.

I'm sorry that you've joined the club, but welcome to the forum.

I had surgery and don't know much about radiotherapy and hormone treatment.

I'm replying to bump your conversation. You mentioned feeling isolated and forgotten about, and I didn't want you left thinking that noone here was responding to you.

 

User
Posted 07 Oct 2025 at 01:02

I had RT and hormones about 7 years ago.

As you are still on bicalutamide, then you have had about four months of HT and you should be fine for starting RT. The implants are a different way of delivering HT, but as far as the cancer is concerned either way works.

PSA and liver tests are not necessary at this stage, and if something ain't necessary, it is not going to get done on the NHS. Though it would be nice to have the CT scan results, no news is good news 

Sadly in today's NHS you need to manage your own treatment. 'the squeaky wheel gets the oil' describes the situation well. If you don't complain you will be ignored. I would suggest you ask for an appointment with your GP to talk about the breast pain and fatigue, it will then be obvious to him that it is the HT and hopefully he will write to your consultant to address this. 

The side effects of the implants are different to the side effects of bicalutamide, so you probably should make a fuss about switching from one to the other.

You're going to have to keep posting on here if you want help. None of us are medically trained, but we can probably point you in the right direction for what questions to ask the specialists.

Dave

User
Posted 07 Oct 2025 at 11:10

Thanks for the response.

When I was given my diagnosis, I was sat with a nurse and given loads of information - probably a bit too much, I remember feeling a bit overwhelmed. I was given a folder that included a list of nurses and I felt that I was going to be cared for. The reality is, they're all too busy, underfunded and overstretched.

I understand what's going on but I would've really appreciated a phone call to ask how I'm doing.

Thanks for the reassurance about the HT. I guess if there are any issues, it'll be picked up by the planning scan but I feel a bit easier about it knowing both paths lead to the same destination. Thanks again! 

User
Posted 08 Oct 2025 at 07:40
I find out local prostate cancer nurses respond effectively BUT slowly.. I usually leave an answer machine message and they get back to me in a few days time.
User
Posted 11 Oct 2025 at 11:40

So, had my planning scan yesterday and everything went well. The staff couldn't have been nicer and reassuring.

While there, I found out about 'Maggie's Place', a charity organisation set up specifically to address the needs of cancer patients outside treatments.

https://www.maggies.org/our-centres/

Had a lovely chat and they have a local support group that I can join. So for anyone else out there feeling a bit lost, I'd recommend them. 

Thanks to everyone for your support and kind words. 

User
Posted 12 Oct 2025 at 13:51

We have had plenty of positive comments about Maggie's on this forum. Definitely a good place for you to find support.

Dave

User
Posted 18 Oct 2025 at 08:39

Originally Posted by: Online Community Member

So, had my planning scan yesterday and everything went well. The staff couldn't have been nicer and reassuring.

While there, I found out about 'Maggie's Place', a charity organisation set up specifically to address the needs of cancer patients outside treatments.

https://www.maggies.org/our-centres

Had a lovely chat and they have a local support group that I can join. So for anyone else out there feeling a bit lost, I'd recommend them. 

Thanks to everyone for your support and kind words. 

Alright, yesterday's planning scan was a breeze, thankfully! Maggie's Place sounds amazing, a real lifeline for folks battling cancer. It's fantastic knowing there's support beyond medical treatments. Reminds me of when my aunt was going through chemo; she felt so isolated. 

Edited by moderator 18 Oct 2025 at 08:46  | Reason: Gaming link removed

 
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