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Gallium 68 PSMA scan

User
Posted 17 Nov 2018 at 10:02

Hi following on from a previous post about my PSA rising from <0.01 to 0.08. What are people’s thoughts about me trying to access or indeed pay for a Gallium 68 PSMA scan. 

Is it best to wait say 3 months for another PSA test to see if it continues to rise and then make a decision or strike now. Would a scan even help with further treatment (I’ve already had RP and RT. 

I have helpfully been informed of oligometastatic metastatic disease on my other post but not sure if this is relevant to me or not or if the scan will detect yet

Any thoughts appreciated

Bri 

User
Posted 17 Nov 2018 at 21:38

Originally Posted by: Online Community Member

Bri

Whatever other action you may decide on why  not tell your GP the result is causing you anxiety or stress and request another PSA test say four weeks after the last one. 

Thanks Chris

The difficulty in Bri‘s case is that the onco knows how much he worries about things, and has already put him on annual PSA tests and told him that she will not intervene at low numbers so there is little point in reacting at this stage. As it happens, Bri found waiting a year very difficult and decided to have an early test (8 months or something like that) and had hell on getting it agreed so the onco has presumably been in communication with the GP about it in the past. 

 

Bri, I know how much you worry but not sure that a request for a G68 or any other scan is worthwhile at present.

1. Your PSA is lower than the lower threshold anyway (Ulsterman is some kind of freak of nature) so it might not pick anything up even if there was something to pick up. 

2. If you did have a scan and it was clear, you would worry that this was only because the PSA was too low

3. Your PSA isn’t behaving like oligomets or micromets - if there is an issue it is much more likely to still be in the pelvic area 

4. You have already had your full whammy of RT to the pelvic area so if it did turn out to be another recurrence, your choices are likely to be go onto long term HT and possibly have chemo. Realistically, your onco is not going to agree to either of those for a tiny PSA rise; even if she only said 20 to wind you wind you up, you know that other hospitals would make you wait until 5 or 10. 

5. If there was a problem and the onco said “okay Bri - HT for the rest of your life and chemo as well” would you go ahead? You didn’t go ahead with the last two treatments (the stenosis and the nose thing) because you were worried about side effects so is your head in a place for doing chemo and Prostap or Zoladex? 

6. If your PSA continues to rise, you could ask about being referred to the trial in Leeds that we are keeping an eye on for John. The PSA has to get to 0.2 though before you can be referred. 

Edited by member 17 Nov 2018 at 22:17  | Reason: Not specified

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

User
Posted 20 Nov 2018 at 09:35
Ian - let them run around. They will tire and go for a nap soon 😃 😊 😈
User
Posted 20 Nov 2018 at 13:22

Originally Posted by: Online Community Member
Crikey feel like I’ve had a virtual telling off

 

You should know me better than that Bri. I was putting a shot across the bows of any members who don't know your history and might cause you undue distress by making ill thought out comments. 

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

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User
Posted 17 Nov 2018 at 14:20
Bri, you’ve read my story. Both my PET have shown nothing at silly psa. My psa is expected over 100 in jan and I’m fine ...... I think.

I very much doubt an Onco would approve / pay for a PET at 0.08. And I think you’d be wasting your time paying for one at such a tiny psa. Spend it on a cruise and wait and see what the next six months brings yeh. Then again ulsterman had one at a tiny psa and it did flag something I think. Easy to say don’t worry , but please try to remember that values less than 0.1 are no longer being recognised in some areas. Raiden my mate who used to be on here has let his rise to 0.14 since surgery 3 yrs ago and is just leaving it till it’s worth a scan. But he’s pro QOL like me. Good luck , but my advice is to enjoy Xmas and not worry.

If life gives you lemons , then make lemonade

User
User
Posted 17 Nov 2018 at 17:11

Bri

Whatever other action you may decide on why  not tell your GP the result is causing you anxiety or stress and request another PSA test say four weeks after the last one. 

Thanks Chris

User
Posted 17 Nov 2018 at 19:10
I have said before here that my present GP, the guy that was the only to one bother to tick the PSA box on my annual blood test form, seven years since my first one, gave me a stack of PSA blood test forms. So I go when I want. I also have a photocopier......😉

I don’t want to be a hypochondriac burden on the NHS, so I will be sticking to 3-4 months testing as recommended from now on, because my PSA is currently undetectable.

I nip into Lloyd’s Chemist, Zoë the vampire takes blood one day, and next day my result appears on my Emis Patient Access app on my IPad as fast at it does on the Doctor’s computer.

It seems it’s far more difficult in other parts of the country, what with a struggle to even get a test. Then a wait and a phone call to the Doctor’s to get the result.

Why are there these regional variations when it’s supposed to be a NATIONAL HEALTH SERVICE?

Cheers, John.

User
Posted 17 Nov 2018 at 21:38

Originally Posted by: Online Community Member

Bri

Whatever other action you may decide on why  not tell your GP the result is causing you anxiety or stress and request another PSA test say four weeks after the last one. 

Thanks Chris

The difficulty in Bri‘s case is that the onco knows how much he worries about things, and has already put him on annual PSA tests and told him that she will not intervene at low numbers so there is little point in reacting at this stage. As it happens, Bri found waiting a year very difficult and decided to have an early test (8 months or something like that) and had hell on getting it agreed so the onco has presumably been in communication with the GP about it in the past. 

 

Bri, I know how much you worry but not sure that a request for a G68 or any other scan is worthwhile at present.

1. Your PSA is lower than the lower threshold anyway (Ulsterman is some kind of freak of nature) so it might not pick anything up even if there was something to pick up. 

2. If you did have a scan and it was clear, you would worry that this was only because the PSA was too low

3. Your PSA isn’t behaving like oligomets or micromets - if there is an issue it is much more likely to still be in the pelvic area 

4. You have already had your full whammy of RT to the pelvic area so if it did turn out to be another recurrence, your choices are likely to be go onto long term HT and possibly have chemo. Realistically, your onco is not going to agree to either of those for a tiny PSA rise; even if she only said 20 to wind you wind you up, you know that other hospitals would make you wait until 5 or 10. 

5. If there was a problem and the onco said “okay Bri - HT for the rest of your life and chemo as well” would you go ahead? You didn’t go ahead with the last two treatments (the stenosis and the nose thing) because you were worried about side effects so is your head in a place for doing chemo and Prostap or Zoladex? 

6. If your PSA continues to rise, you could ask about being referred to the trial in Leeds that we are keeping an eye on for John. The PSA has to get to 0.2 though before you can be referred. 

Edited by member 17 Nov 2018 at 22:17  | Reason: Not specified

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

User
Posted 20 Nov 2018 at 07:05
Crikey feel like I’ve had a virtual telling off
User
Posted 20 Nov 2018 at 07:39
Its a real priveledge to be told off by Lyn - enjoy!

She is also the PC repository of conservative treatment which with PC is usually a good thing - freaks of nature like Ulsterman excepted 😂😂😂😂

User
Posted 20 Nov 2018 at 08:07
She is our Matron, so do as you’re told.
User
Posted 20 Nov 2018 at 09:00
Lyn provides clear, unambiguous advice bringing things into clear focus. Is there anything incorrect in her reply? Just saying......😇

Ido4

User
Posted 20 Nov 2018 at 09:35
Ian - let them run around. They will tire and go for a nap soon 😃 😊 😈
User
Posted 20 Nov 2018 at 10:24

I view my PSMA scan and my body as a contribution to medical science, and, believe me, I’ve been called much worse than a freak of nature.  😁

Bri, I had my PSMA scan before salvage radiotherapy.  Even with a low PSA of 0.023, it picked up something.  My oncologist recommended the PSMA scan for three main reasons.  My starting points weren’t good.  She strongly suspected cancer was still active despite the prostatectomy and any other type of scan had no chance of picking anything up, although she was willing to do a Choline pet scan just in case.  She warned me I could well be wasting my money.

Now, in your case, I’d be really wanting to know what benefit there would be if I had a PSMA scan and it found something.  Could it change your treatment pathway?  If it did pick up something, then you might start treatment earlier, but would that necessarily be an advantage?  I don’t know, but I want to put off long term HT for as long as I safely can.  

If there are no benefits to risking wasting your money, I’d go on a holiday instead.  But that’s my answer to most things.

i also wonder if the PSMA scan picked everything up and so it doesnt bring total peace of mind.  We know we have dealt with the remnants of cancer in the pelvic lymph nodes but we don’t know if there was anything else going on anywhere else that wasn’t significant enough to be picked up.  I’m almost sounding like Donald Rumsfeld and his infamous speech, so time to go.

BTW, greeting from my Antarctica cruise.

Ulsterman

User
Posted 20 Nov 2018 at 10:40
“...there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns – the ones we don't know we don't know....”

Sounds like some PCa diagnoses!

Who knows?

Cheers, John.

User
Posted 20 Nov 2018 at 11:26

🤣🤣🤣🤣🤣🤣🤣

User
Posted 20 Nov 2018 at 13:22

Originally Posted by: Online Community Member
Crikey feel like I’ve had a virtual telling off

 

You should know me better than that Bri. I was putting a shot across the bows of any members who don't know your history and might cause you undue distress by making ill thought out comments. 

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

User
Posted 20 Nov 2018 at 22:21

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Crikey feel like I’ve had a virtual telling off

 

You should know me better than that Bri. I was putting a shot across the bows of any members who don't know your history and might cause you undue distress by making ill thought out comments. 

 

It’s ok folks My comment just bought me a bit of time 😉 It seems you have a fan club Lyn 😆. As Lyn says she knows my history and probably remembers it better than I do. We’ve communicated about nearly every aspect of my health for over 5 years now and I have always respected the advice and counsel Lyn gives and will continue to do so 😉 I also appreciate the shot across the bows  

I wasn’t happy with annual testing as the new Oncol put me on that rather early and not in line with NICE guideline. A subsequent Oncol decided to put me back to 6 months. 

Would  I go for treatment if they offered Chemo and HT. My answer to that is I’m not sure if I would want a 2nd opinion first. I would definitely want to know what evidence /research backs that proposal up at that point.

I think Asking questions is vital rather than just accepting what the medics say. The stenosis op I refused was literally refused on the operating table as I asked the surgeon a few questions. Good job I did as he told me I could have ended up incontinent if he had operated . So I walked away. 5 years later all is still well. Likewise with my nose op. I asked questions which if I hadn’t I could have ended up with significant problems as the health professionals had not communicated about my condition and urological advice. A plan has now been put in place so my nose issue can be sorted but only because I questioned the medics. 

So yes I would accept treatment if the time was right but I will only know that by questioning the medics. 

Lyn if it does continue to rise (Hopefully not) please keep me in the loop regarding the trial. 

Cheers

Bri

Edited by member 20 Nov 2018 at 22:23  | Reason: Not specified

 
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