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

Notification

Error

Cancer still active

Email this conversation Print this conversation
User
Posted 24 Apr 2024 at 19:02

My PSA has been running at 0.05 for going on a year .

Been getting back ache top, middle and bottom when I do things…. not there all the time.

Oncologist ordered a ct scan with the radioactive injection .

When I went back on Zoladex plus Appalutamide in 2022, it was because it was on my T4 and L3.

i had previously had 3 areas treated with SABR ( not the T4 and L3 ).

I was shocked to learn that even with a PSA at 0.05, my L3 has an active spot on it…. Apparently no measurement given.

im considering asking if I can get this treated with SABR privately.

i know it won’t cure things, but hope it might buy me more time.

Any thoughts on this gratefully accepted.

 

Shaun

User
Posted 25 Apr 2024 at 00:03

Shaun, you will need deep pockets to fund SABR treatment, unless you have insurance. My insurance company covered the cost of scans consultations and SABR to a single tumor last year, I have another test in a few weeks. I got the impression that  cancer should not return to a SABR treated tumor. 

I have had two separate lymph nodes tumors treated, following surgery and salvage RT. I am perhaps chasing rainbows but as long as my oncologist and insurance company agree, I will keep having "curable intent" treatment. 

I am a big fan of Dr Kwon in the US ,look him up on YouTube.

Thanks Chris 

User
Posted 25 Apr 2024 at 00:57
I believe it is usual to only treat up to three Mets with SABR on the NHS. There are several reasons for this , the one most mentioned is that if the Mets are that extensive, the patient would likely need to keep going back for treatment as they continue to develop. It might be possible to get further Mets treated privately and get a professional opinion on this either from your oncologist or another radio Oncologist who would need to see your full histology and scans..
Barry
User
Posted 28 Apr 2024 at 12:29

Shaun the pre treatment consultantions ,scan, SABR treatment to a single tumor and post treatment meetings have come to £38k.

Just the PSMA scan was charged at £4040.00, I saw recently someone having the same scan at the same centre, paid for by self funding and it was around £2.5k. So a significant difference between self funding and insurance. 

I was initially told the cost would be approximately £12k a tumor. In that £38k was also £2.5 for the physicist to rewrite the program after about the third Day. 

Thanks Chris 

 

User
Posted 28 Apr 2024 at 22:08
I am not at all surprised that that the cost of scans is higher if you have medical insurance than if you self fund. I learnt this when I needed and urgent special dental x-ray when I was in London, quite some time ago. I was directed to a major hospital and was asked whether I would be paying and said yes. On paying I asked for a receipt, (so I could claim some of the money back under a scheme I belonged to up to a low maximum for each year for various treatments). The receptionist replied that as I was expecting to get some of the money back I should have said I would not be paying entirely so the charge should have been double what they asked me for. I know it often works the same if you take your car to a body shop, where they quote lower prices for self funders with an inflated figure if it's going to be paid by insurers. No wonder Insurance Premiums are so high in both cases!!

As regards PSA of 0.05, generally spread is reflected in the trend of the figurers but there are are occasionally cases where there is spread but PSA is unusually low or zero as one eminent doctor as found. It has to be said that this happens in more rare cases where the cancer is not a common type.

Barry
Show Most Thanked Posts
User
Posted 25 Apr 2024 at 00:03

Shaun, you will need deep pockets to fund SABR treatment, unless you have insurance. My insurance company covered the cost of scans consultations and SABR to a single tumor last year, I have another test in a few weeks. I got the impression that  cancer should not return to a SABR treated tumor. 

I have had two separate lymph nodes tumors treated, following surgery and salvage RT. I am perhaps chasing rainbows but as long as my oncologist and insurance company agree, I will keep having "curable intent" treatment. 

I am a big fan of Dr Kwon in the US ,look him up on YouTube.

Thanks Chris 

User
Posted 25 Apr 2024 at 00:57
I believe it is usual to only treat up to three Mets with SABR on the NHS. There are several reasons for this , the one most mentioned is that if the Mets are that extensive, the patient would likely need to keep going back for treatment as they continue to develop. It might be possible to get further Mets treated privately and get a professional opinion on this either from your oncologist or another radio Oncologist who would need to see your full histology and scans..
Barry
User
Posted 28 Apr 2024 at 11:49

Hi Chris.

Thanks for the reply.

Can I be nosey and ask if you know how much the scan and SABR cost your insurance.

keep chasing that rainbow pal, good luck with any further treatment you have.

Please let me know how you get on.

Shaun

User
Posted 28 Apr 2024 at 11:53

Hi Barry.

Thanks for the reply.

I’ve asked for an appointment with my oncologist to do just that.

I was a bit shocked to find out I had a small active spot despite being on Zoladex and Appalutamide . Been on these 2 years ish… 

And told that at 0.05 it was undetectable .

Shaun

User
Posted 28 Apr 2024 at 12:29

Shaun the pre treatment consultantions ,scan, SABR treatment to a single tumor and post treatment meetings have come to £38k.

Just the PSMA scan was charged at £4040.00, I saw recently someone having the same scan at the same centre, paid for by self funding and it was around £2.5k. So a significant difference between self funding and insurance. 

I was initially told the cost would be approximately £12k a tumor. In that £38k was also £2.5 for the physicist to rewrite the program after about the third Day. 

Thanks Chris 

 

User
Posted 28 Apr 2024 at 22:08
I am not at all surprised that that the cost of scans is higher if you have medical insurance than if you self fund. I learnt this when I needed and urgent special dental x-ray when I was in London, quite some time ago. I was directed to a major hospital and was asked whether I would be paying and said yes. On paying I asked for a receipt, (so I could claim some of the money back under a scheme I belonged to up to a low maximum for each year for various treatments). The receptionist replied that as I was expecting to get some of the money back I should have said I would not be paying entirely so the charge should have been double what they asked me for. I know it often works the same if you take your car to a body shop, where they quote lower prices for self funders with an inflated figure if it's going to be paid by insurers. No wonder Insurance Premiums are so high in both cases!!

As regards PSA of 0.05, generally spread is reflected in the trend of the figurers but there are are occasionally cases where there is spread but PSA is unusually low or zero as one eminent doctor as found. It has to be said that this happens in more rare cases where the cancer is not a common type.

Barry
User
Posted 29 Apr 2024 at 09:07

Thanks Barry.

Thats very useful information.

Will let you know how I get on.

Shaun

 
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