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

Notification

Error

RP ageed 56

Email this conversation Print this conversation
User
Posted 06 Nov 2023 at 08:09

Diagnosed 2 years ago.  Had RP.  One year later PSA levels started rising. Two years in PSA has doubled.  Waiting for oncology appt 😔 worried beyond words

User
Posted 19 Jan 2024 at 09:25

Sorry to hear that for both of you, I guess it’s plan B and RT with or without (hopefully🤞) HT.

Good luck with your continuing journey…and if you do end up on HT I’m an expert on all the possible side-effects🤣🤣🤣. Hopefully you’ll get off lightly!

Derek

User
Posted 15 Feb 2024 at 12:08
Don't panic just yet - if you are prescribed HT then wait and see how it affects you. Different people react differently to the same drugs. For example both my wife and I take statins due to cholesterol levels - she suffers very badly from muscle pains etc etc but I have no side effects whatsoever.
User
Posted 15 Feb 2024 at 22:34

Gouin, if you have Extra deep pockets or unlimited insurance cover you may be able to get more treatment in the private sector than on the NHS. 

I moved to the private sector because we have medical insurance and I was told they would treat 5 hot spots. I wasn't told they could not not treat a combination of bone and soft tissue but I wasn't told they could. Five hotspots would cost an insurance company in the region of £60k.

If my PSA hits 1 or a doubling time of three months I will have a third PSMA scan and possibly a third round of SABR treatment. It must be said there are times when they can't treat certain locations because of the risk of collateral damage.

I may be chasing a pot of gold at the end of the rainbow,but that is my choice and as long as the onco and insurance company agree to it that is where I am going. 

It may not be relevant to you but Google Dr Kwon.

Thanks Chris 

User
Posted 06 Nov 2023 at 08:09

Diagnosed 2 years ago.  Had RP.  One year later PSA levels started rising. Two years in PSA has doubled.  Waiting for oncology appt 😔 worried beyond words

User
Posted 06 Nov 2023 at 09:26

Sorry you are here. About a third of RPs don't cure the cancer, so you are on a well worn path.

An initial low PSA followed by a slow rise is often indicative of a few cells left in the prostate bed. This is curable with RT. If your PSA were high immediately after the operation it is worse news as that implies a lot of cells somewhere else in the body. Hopefully your oncologist will arrange some scans to try and identify where the cancer is.

What is your current PSA ? Sometimes they won't do a scan until it is 0.5 as below that level there is not enough cancer to show up.

 

Edited by member 06 Nov 2023 at 10:11  | Reason: Not specified

Dave

User
Posted 13 Dec 2023 at 23:59

Thanks for the update. Keep us informed we have other people in similar situations. They will want to know what tests you are offered and the results, as it may help them decide their treatment options.

Dave

User
Posted 19 Jan 2024 at 09:13
Please Miss, can I join the club? :)

On the same road - PSA was <0.00 six weeks after the op but up to 0.12 in December (op+7 months) - next PSA in March and if it exceeds the magic 0.2 then off for further treatment - probably RT, hopefully not HT :)

Ah well, it's certainly a journey!

User
Posted 15 Feb 2024 at 12:01

Well finally have results and treatment plan. Psma showed 4 spots, one in hip bone.   The consultant didn't seem overly concerned that it is in the bone!

Treatment plan is unfortunately, HRT for life!!! Not sure what we are both feeling today.

The feeling on  this forum seems to be RT opposed to HR.   Is this because of the side effects?

Feeling a bit numb today 😔 

User
Posted 15 Feb 2024 at 20:42

Originally Posted by: Online Community Member

Well finally have results and treatment plan. Psma showed 4 spots, one in hip bone.   The consultant didn't seem overly concerned that it is in the bone!

Treatment plan is unfortunately, HRT for life!!! Not sure what we are both feeling today.

The feeling on  this forum seems to be RT opposed to HR.   Is this because of the side effects?

Feeling a bit numb today 😔 

Sometimes, it can be a bit misleading when you read posts on a forum like this. When people talk on here about salvage radiotherapy, this is for men who either have a recurrence in the prostate bed some time after the RP or a bit of cancer was left behind. Salvage RT isn't possible in your situation as it is more than just a little bit left behind in the prostate bed.  

Sometimes you will see men talking on here about SABR - a high dose of radiotherapy targeted at one or two mets but again, because you are dealing with 4 hot spots, SABR isn't relevant - you would have it treated and it would just appear somewhere else in his body. So hormone treatment is the right thing - but have they also talked about the possibility of chemotherapy and / or two hormones combined? If not, worth you asking why not. 

Bone mets aren't the most worrying - mets in the soft organs (lungs, brain, liver, kidneys) are the most serious problem for longevity and quality of life, followed by metastatic spread in the lymphatic system. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Show Most Thanked Posts
User
Posted 06 Nov 2023 at 09:26

Sorry you are here. About a third of RPs don't cure the cancer, so you are on a well worn path.

An initial low PSA followed by a slow rise is often indicative of a few cells left in the prostate bed. This is curable with RT. If your PSA were high immediately after the operation it is worse news as that implies a lot of cells somewhere else in the body. Hopefully your oncologist will arrange some scans to try and identify where the cancer is.

What is your current PSA ? Sometimes they won't do a scan until it is 0.5 as below that level there is not enough cancer to show up.

 

Edited by member 06 Nov 2023 at 10:11  | Reason: Not specified

Dave

User
Posted 06 Nov 2023 at 10:03

Doubled in 3 months to 0.4

User
Posted 13 Dec 2023 at 23:50

It's now 0.5.  Currently awaiting PMSA scan

User
Posted 13 Dec 2023 at 23:59

Thanks for the update. Keep us informed we have other people in similar situations. They will want to know what tests you are offered and the results, as it may help them decide their treatment options.

Dave

User
Posted 18 Jan 2024 at 23:09

Husband finally had the psma pet scan today.  It's been a long wait.  Now have to wait another 2 weeks for Oncology appt to see what's next!!!!

User
Posted 19 Jan 2024 at 09:13
Please Miss, can I join the club? :)

On the same road - PSA was <0.00 six weeks after the op but up to 0.12 in December (op+7 months) - next PSA in March and if it exceeds the magic 0.2 then off for further treatment - probably RT, hopefully not HT :)

Ah well, it's certainly a journey!

User
Posted 19 Jan 2024 at 09:25

Sorry to hear that for both of you, I guess it’s plan B and RT with or without (hopefully🤞) HT.

Good luck with your continuing journey…and if you do end up on HT I’m an expert on all the possible side-effects🤣🤣🤣. Hopefully you’ll get off lightly!

Derek

User
Posted 15 Feb 2024 at 12:01

Well finally have results and treatment plan. Psma showed 4 spots, one in hip bone.   The consultant didn't seem overly concerned that it is in the bone!

Treatment plan is unfortunately, HRT for life!!! Not sure what we are both feeling today.

The feeling on  this forum seems to be RT opposed to HR.   Is this because of the side effects?

Feeling a bit numb today 😔 

User
Posted 15 Feb 2024 at 12:08
Don't panic just yet - if you are prescribed HT then wait and see how it affects you. Different people react differently to the same drugs. For example both my wife and I take statins due to cholesterol levels - she suffers very badly from muscle pains etc etc but I have no side effects whatsoever.
User
Posted 15 Feb 2024 at 20:42

Originally Posted by: Online Community Member

Well finally have results and treatment plan. Psma showed 4 spots, one in hip bone.   The consultant didn't seem overly concerned that it is in the bone!

Treatment plan is unfortunately, HRT for life!!! Not sure what we are both feeling today.

The feeling on  this forum seems to be RT opposed to HR.   Is this because of the side effects?

Feeling a bit numb today 😔 

Sometimes, it can be a bit misleading when you read posts on a forum like this. When people talk on here about salvage radiotherapy, this is for men who either have a recurrence in the prostate bed some time after the RP or a bit of cancer was left behind. Salvage RT isn't possible in your situation as it is more than just a little bit left behind in the prostate bed.  

Sometimes you will see men talking on here about SABR - a high dose of radiotherapy targeted at one or two mets but again, because you are dealing with 4 hot spots, SABR isn't relevant - you would have it treated and it would just appear somewhere else in his body. So hormone treatment is the right thing - but have they also talked about the possibility of chemotherapy and / or two hormones combined? If not, worth you asking why not. 

Bone mets aren't the most worrying - mets in the soft organs (lungs, brain, liver, kidneys) are the most serious problem for longevity and quality of life, followed by metastatic spread in the lymphatic system. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Feb 2024 at 22:34

Gouin, if you have Extra deep pockets or unlimited insurance cover you may be able to get more treatment in the private sector than on the NHS. 

I moved to the private sector because we have medical insurance and I was told they would treat 5 hot spots. I wasn't told they could not not treat a combination of bone and soft tissue but I wasn't told they could. Five hotspots would cost an insurance company in the region of £60k.

If my PSA hits 1 or a doubling time of three months I will have a third PSMA scan and possibly a third round of SABR treatment. It must be said there are times when they can't treat certain locations because of the risk of collateral damage.

I may be chasing a pot of gold at the end of the rainbow,but that is my choice and as long as the onco and insurance company agree to it that is where I am going. 

It may not be relevant to you but Google Dr Kwon.

Thanks Chris 

User
Posted 17 Feb 2024 at 19:56

Husband is really worried shout the side effects.    He really doesn't want to be on HRT.   We are struggling at the minute 😔 

User
Posted 17 Feb 2024 at 20:24
There is little point worrying about the side effects before he gets them - thousands of men across the UK cope just fine on HT, not everyone has all side effects and if he really hates it, he can always stop. Perhaps best to only have the 1 month injections to begin with, rather than the 3 month ones, just until he sees how he gets on. The sad fact is that, if he doesn't have the hormone treatment, he is going to struggle much more - the symptoms of uncontrolled cancer are not pleasant and many of the side effects are ultimately the same as for HT - pain, loss of libido, loss of mobility, odema, fatigue.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Feb 2024 at 21:03

I know you are right.   We are a young couple in our 50's so it's all a big blow.   

The consultant said HRT for life but when you read things it appears its not good long term.

Also, we don't know why RYlT wasn't an option.

I think we came away from the appointment and now have so many questions. 

The consultant was a bit "it is what is is"....

 
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 ▲
©2024 Prostate Cancer UK