I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

what happens after radiotherapy

Email this conversation Print this conversation
User
Posted 22 Mar 2025 at 14:21

I have been in a different thread on here, so rather than add this subject into one that was really about something else, decided to start a a new one. 

As I have already posted, I am currently undergoing radiotherapy for locally advanced prostate cancer with no spread anywhere other than into the capsule.  This will end after 3 more treatments (hurrah).  I have a last review on the first of those 3 treatments, but if the other reviews I have had are anything to go by, they are mainly related to how I am managing the treatments (pretty well), and about side effects (minimal so far, so fingers crossed).  

I haven't had any discussions about what next.  Follow up etc.  I am still having Prostap 3 injections for a further 9 months, via my GP and have PSA's done at the same time.  I have no idea how the determination is made as to how successful the radiotherapy has been - just PSA, or further scans? biopsies?  frequency of appointments? where these will take place. 

I understand that all hospitals have different protocols, within presumably nice guidelines, but I'd appreciate some ideas as to how this follow up will go over the next few months.   I have been most appreciative throughout this journey of all the helpful comments to my previous posts, so I'm sure responses to this one will be the same. 

User
Posted 24 Mar 2025 at 09:26

I've just had a my first review 12 weeks after I finishing EBRT and HDR brachytherapy. I had a blood test a week before.

In the meeting the doc asked me about my water works (all good) and gave me the results of the blood test, Testosterone and PSA, both undetectable (woo hoo!). She said that's what to expect until I come off hormone therapy in 16 months time. They would then monitor PSA levels and anything below 2 is ok

I've got a telephone follow up meeting in 6 months time and will have a Testo/PSA before hand. Doc also booked me in for a Bone density scan in a couple of weeks and also checked I was taking calcium/vitamin tablets. I think the plan is to then have another scan once off HT to see if/how much its affected my bones.

All the best 

John

User
Posted 22 Mar 2025 at 21:25

Protocols vary between hospitals.

At mine, we had a radiographer review at 6 weeks and 12 weeks after the RT, with you getting a PSA test just before the 12 week one (except for 5-session stereotactic radiotherapy where first PSA test is 6 months after RT). These reviews are to see how you are doing and if you need any support, so do note down any issues and anything you want to ask. They can't tell you anything about how the treatment went yet.

At 6 months, we were passed back to the oncologist, who may review you too, but again, it's too soon to know how well it worked, but they'll likely be doing PSA tests every 3-6 months.

After you finish hormone therapy, your Testosterone should eventually come back but that can take months. This will cause your PSA to rise, so it's very useful to have Testosterone tests added to your PSA tests when you finish hormone therapy, so you know how that's going. When your Testosterone stabilises, your PSA should stabilise around 3 months later, and it's only from this point that you can start to see how well the radiotherapy worked.

The PSA tests are much more sensitive than any scans. Scans and possibly biopsies might only be done if the PSA levels are higher than they should be or the PSA continues rising more than 3-6 months after the Testosterone has stabilised. It's worth explicitly asking for the Testosterone tests to be added when you finish the hormone therapy - most places don't do this automatically, but it makes it much easier to interpret the PSA level, given that you expect the return of Testosterone to cause a PSA rise if you still have a prostate, and to check your Testosterone has come back to a reasonable level.

It can feel quite emotional after you finish the radiotherapy, particularly if you had 20 or more sessions. All those lovely radiotherapists working on curing your cancer have suddenly vanished, and there's a sense you've been forgotten. It takes a while to mentally switch from "I've got cancer which needs treating", to "I've finished my treatment".

User
Posted 28 Mar 2025 at 10:47

As a follow up to this, the day I completed treatment, I put a post on social media, and received so many wonderful comments.  I heard from people I hadn't heard from for years, telling me of their own experiences with cancer, some prostate some not. 

The best thing of all though, I had 4 private messages, from men, again who  I had known from many years ago, who told me as soon as they had read of my experience, they immediately contacted their GP to get a PSA.  So, I guess the moral of the story is - men - talk about this, talk about this, and then  talk some more.  More lives will be saved, as hopefully mine has, by just addressing that this exists, and is treatable in many cases, and your life might just be saved by that one single small step. 

Show Most Thanked Posts
User
Posted 22 Mar 2025 at 21:25

Protocols vary between hospitals.

At mine, we had a radiographer review at 6 weeks and 12 weeks after the RT, with you getting a PSA test just before the 12 week one (except for 5-session stereotactic radiotherapy where first PSA test is 6 months after RT). These reviews are to see how you are doing and if you need any support, so do note down any issues and anything you want to ask. They can't tell you anything about how the treatment went yet.

At 6 months, we were passed back to the oncologist, who may review you too, but again, it's too soon to know how well it worked, but they'll likely be doing PSA tests every 3-6 months.

After you finish hormone therapy, your Testosterone should eventually come back but that can take months. This will cause your PSA to rise, so it's very useful to have Testosterone tests added to your PSA tests when you finish hormone therapy, so you know how that's going. When your Testosterone stabilises, your PSA should stabilise around 3 months later, and it's only from this point that you can start to see how well the radiotherapy worked.

The PSA tests are much more sensitive than any scans. Scans and possibly biopsies might only be done if the PSA levels are higher than they should be or the PSA continues rising more than 3-6 months after the Testosterone has stabilised. It's worth explicitly asking for the Testosterone tests to be added when you finish the hormone therapy - most places don't do this automatically, but it makes it much easier to interpret the PSA level, given that you expect the return of Testosterone to cause a PSA rise if you still have a prostate, and to check your Testosterone has come back to a reasonable level.

It can feel quite emotional after you finish the radiotherapy, particularly if you had 20 or more sessions. All those lovely radiotherapists working on curing your cancer have suddenly vanished, and there's a sense you've been forgotten. It takes a while to mentally switch from "I've got cancer which needs treating", to "I've finished my treatment".

User
Posted 24 Mar 2025 at 09:26

I've just had a my first review 12 weeks after I finishing EBRT and HDR brachytherapy. I had a blood test a week before.

In the meeting the doc asked me about my water works (all good) and gave me the results of the blood test, Testosterone and PSA, both undetectable (woo hoo!). She said that's what to expect until I come off hormone therapy in 16 months time. They would then monitor PSA levels and anything below 2 is ok

I've got a telephone follow up meeting in 6 months time and will have a Testo/PSA before hand. Doc also booked me in for a Bone density scan in a couple of weeks and also checked I was taking calcium/vitamin tablets. I think the plan is to then have another scan once off HT to see if/how much its affected my bones.

All the best 

John

User
Posted 27 Mar 2025 at 12:18

I'm really happy to say that I have now completed my radiotherapy treatment, rang the bell and all, and felt very emotional about it.  The family, needless to say are all over the moon that finally things are moving in the right direction.  

Apparently, the radiologist will phone in 7-10 days, as they say the side effects can get worse for this length of time after treatment has finished.  They want to know how things are in this direction, to see what they can do to help.   Currently, they are bearable, urinary maybe worse, but not impacting so much, having to wee very often, can't fully empty bladder, and taking ages to start.  Other than that, fine, they recommended drinking cranberry juice which no doubt helps with any feelings of soreness. 

Bowel issues, again having to go often, never entirely sure if it's wind or something more serious!!  Some looseness, not quite diarrhoea.  No incontinence thankfully, hope that lasts.  They tell me these are all to be expected, along with the feelings of fatigue. 

From then on, its appointment maybe phone, maybe in person with Dr or Senior Radiologist in 6-12 weeks.  Oncologist in 6-9 months, continuing in the meantime with Prostap 3 and PSA's until February 2026.  Then stop Prostap and continue with PSA's.  (I assume). 

We are very lucky to have a cancer charity attached to the hospital that offers support, drop in chats, stop by for tea/coffee/biscuits when you like, and complementary therapies 4 sessions each for patient and carer/supporter.  

User
Posted 28 Mar 2025 at 10:47

As a follow up to this, the day I completed treatment, I put a post on social media, and received so many wonderful comments.  I heard from people I hadn't heard from for years, telling me of their own experiences with cancer, some prostate some not. 

The best thing of all though, I had 4 private messages, from men, again who  I had known from many years ago, who told me as soon as they had read of my experience, they immediately contacted their GP to get a PSA.  So, I guess the moral of the story is - men - talk about this, talk about this, and then  talk some more.  More lives will be saved, as hopefully mine has, by just addressing that this exists, and is treatable in many cases, and your life might just be saved by that one single small step. 

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK