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PET/CT SCAN

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User
Posted 10 May 2014 at 14:21
Hi just thought I would post these link regarding the scan I had in Germany from my Surgeons point of view and that of another patient. Reading though it seems that at the time of posting I was only the second to follow this path.

http://www.birminghamprostateclinic.co.uk/assessments/PET_scans.php

http://www.birminghamprostateclinic.co.uk/testimonials/testimonials_davis_02.php

Hope it may help others in a similar position

Roy

User
Posted 12 May 2014 at 18:26
Is it that when you edit a post it needs to re-join a list for moderator to check again ?

Would make sense I s'pose as otherwise naughty things could be edited in after an initial post has been approved.

?

User
Posted 25 Jun 2016 at 14:50

PET scans it seems are not readily offered. I had my C11 CholinePET scan at Oxford Churchill hospital by the NHS and have been offered a second one before year end. I asked if it could be. PSMA but was told that it is still a trial and not available to me. I think a member on this site flew to Munich to get the superior PSMA scan. The Choline tracer is also very hard to come by and my scan was cancelled twice. It is hard to produce , and then has to be driven to the hospital. It has very short radioactive half-life , so it's difficult to get everything right.

User
Posted 22 Dec 2017 at 21:41

http://www.prostatakrebse.de/informationen/pdf/PSMA-Kliniken.pdf

In Germany you can have a PSMA-PET/CT in every larger clinic with department of nuclear medicine. It becomes very popular in the last 3 years.

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User
Posted 11 May 2014 at 08:02

Hi Roy,

Very good posting

User
Posted 11 May 2014 at 09:27
Thanks for sharing Roy. Something to consider if needed.

I thought it interesting that Mr Doherty referred to mets occurring when the PCa breeches the lymph nodes next to the prostate. Obviously I am aware that cancer can spread via the lymphatic system but I also thought it could spread by other means. Just thought it was an interesting point

Hope you are well. When do you get your PSA results

Bri

User
Posted 11 May 2014 at 12:36
Hi Bri

I think the explanation was rather simplistic in its explanation so I have placed links to something you may find interesting in the previous post, Particularly video 4, I did try to combine the two in a previous post but it seems impossible to do

http://m.youtube.com/watch?v=wtcQWhLC9YQ

http://m.youtube.com/watch?v=zAsLb2FGNbU

http://m.youtube.com/watch?v=MRbuGM0BIn8

http://m.youtube.com/watch?v=aJNC_CBLhmg

Roy

Edited by member 13 May 2014 at 19:21  | Reason: Not specified

User
Posted 11 May 2014 at 12:56
😱

Edited by member 13 May 2014 at 19:16  | Reason: Not specified

User
Posted 11 May 2014 at 13:11
Hi Bri

I think the explanation was rather simplistic in its explanation so I have placed links to something you may find interesting in the previous post, Particularly video 4, I did try to combine the two in a previous post but it seems to have vanished, got to say this new format looks good but it's not as user friendly as the old one, what happened to "if it's not broke, don't fix it".

I am still awaiting a date for my bloods, but I assume it will be several weeks yet, but am feeling ok, with no real side effects,so I hope they hit the bullseye, as they said they would use my PET/CT scans to plan the areas to be zapped.

PS don't tell TG my dog has stolen TED😈

Thanks

Roy

Edited by member 11 May 2014 at 15:47  | Reason: Not specified

User
Posted 11 May 2014 at 13:44
Why is it when I edit a post it vanishes. I am getting fed up with this.😑😑😑😑
User
Posted 11 May 2014 at 17:43

Roy,

Thanks for sharing.

Flexi

User
Posted 11 May 2014 at 17:58
😱

Edited by member 13 May 2014 at 19:23  | Reason: Not specified

User
Posted 11 May 2014 at 18:33
OMG the posts have now appeared and I don't know how to remove them GRRRRR.
User
Posted 12 May 2014 at 18:26
Is it that when you edit a post it needs to re-join a list for moderator to check again ?

Would make sense I s'pose as otherwise naughty things could be edited in after an initial post has been approved.

?

User
Posted 12 May 2014 at 21:02

Spot on Robhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif

User
Posted 22 May 2014 at 22:33
Hi Roy,

Interested in the PET scan you had in Germany. I am contemplating whether at some point it would be a good idea for me as my PSA continues to rise, albeit slowly, to have one of these advanced scans. I am presently under the care of the Royal Marsden at Sutton but each time I have a telephone appointment with them and ask at what PSA level they will further investigate or consider HT, they seem to up the level. Furthermore, at my last appointment I just got to speak with a junior doctor who had only been at the Marsden for a couple of weeks and was not able to answer several questions I asked. In the circumstances, I am minded to contact the hospital in Heidelberg where I had my RT to check at what PSA level they feel an advanced scan would be helpful. (I see University Hospital Heidelberg are the other hospital mentioned with the advanced scanning capability). I think it might be better to try to halt any significant spread early rather than deal with it when it has further advanced,

Appreciate your posting details

Barry
User
Posted 23 May 2014 at 00:02
Hi Barry

The hospital I used was in Munich, they were very professional and the cost was around €2700, the procedure took approx 2 hours and I came away with a disk of the scans and a report from their MDT was sent to my surgeon and myself a few days later. I must say the quality of the scans are superb and I can send you a image if you like through your email. I Agee with you that it is best to now where the problem is and then the treatment can be tailored accordingly. I have put a link to the hospital so you can research it if you wish, I have also posted a few days ago regarding my surgeons view, and that of another patient who underwent the same procedure, earlier in this thread.

If you have anymore questions please feel free to ask.

http://www.mri.tum.de/node/555

Keep fighting

Roy

Edited by member 23 May 2014 at 09:51  | Reason: Not specified

User
Posted 24 May 2014 at 01:19
Hi Roy,

Thanks for details re your scan and much appreciate offer to answer any questions which I will note for future reference. Good that you were impressed with scan, hospital and staff.

I would consider having the 68 Ga -PSMA scan at Munich if it was not available at Heidelberg, where I know some of the staff through having had my RT there and know my way round Heidelberg and the vast campus where most of the Universities 12 hospitals are located. Also, as the Heidelberg University part paid for my EBRT/ Carbon ion treatment, they may do the scan at reduced cost, (reason I hopefully). I will ask the Study Nurse who I was on good terms with (though not intimately I hasten to add) over the the 3 years of the study I took part in, whether the experts think the scan would be helpful. I will ask this after my next PSA in a few weeks time and post update in due course

Best wishes to you.

Barry
User
Posted 24 May 2014 at 10:14
Hi Barry

I am pleased you found it helpful, and I agree it is better to be treated in a place you feel comfortable with and trust, I wish you luck in your quest to beat this, and like I said anything specific you want to know just ask.

All the best

Roy

User
Posted 06 Nov 2015 at 22:14

Roy,

Excellent posts, many thanks, especially on PMSA scan and HT in the fourth video. I would be very interested in any update 18 months later.

I would also report that UCLH and The Harley Street Clinic are now doing PMSA (Gallium 68) scans. I had one end-Sept and will report later on whether my insurance company will pay for it.

In your fourth video, Charles Myers states that oestrogen makes PC cells commit suicide, but the other patient to whose testimonial you post a link comments that he rejected HT on the basis it "accepts the presence of PC", by which I assume he means that HT doesn't kill the PC cells. Most of my research says that HT will not eradicate the PC cells and separately some sites say that anyone with a heart problem should not have HT. Please can anyone point me in the direction of some good information on the different types of HT and also on whether all are excluded for those with heart problems.

Also, as my PSA continues to rise, my consultant is pushing me towards RT on the prostate bed (my prostate was removed in 2003 and my PSA was below 0.01 until 2013) even though the PMSA scan doesn't show any PC cells. I can't understand how they can aim the RT when they have no target. Again, any help most appreciated?

Best,

Andrew

User
Posted 06 Nov 2015 at 23:02

Hi Andrew - sorry to see that your cancer has come back so many years after surgery. My' dad had 13 years of undetectable PSA after his op but it came back two years ago - he has decided not to have any treatment and to take his chances but he is quite a bit older than you and might possibly change his mind if he started to have symptoms.

We have quite a few members who manage HT alongside pre-existing heart problems so I don't think you should let that put you off. Most hormone treatments are not oestrogen so the Snuffy Myers video may have been a bit of a red herring for you. HT will weaken the cells either by disguising the testosterone or by halting its production so that the RT does more damage.

It seems they are still offering you a curative path so why not give yourself the best chance :-)

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

User
Posted 07 Nov 2015 at 10:10
Hi Andrew

Regarding targeting the prostate bed. I was told they leave clips in that area so it is easy identified on a scan when planning RT. The area isn't that big anyway so they know where to target

Bri

User
Posted 07 Nov 2015 at 21:07
Hi Andrew

I am surprised that you were advised to have a scan with a PSA of 0.24, as it is normally advised that both the choline and gallium scans require a PSA of between 1 and 2 to show any activity. As regards the introductions of hormones and RT, I would be waiting to see what the trend was with my PSA before acting, as how do you know where to treat if you cant detect it, but I am not your specialist and may not have all the information or knowledge to advise what is best for your situation.

All the best

Roy

User
Posted 25 Jun 2016 at 14:29

Hello,

Just joined this group.  I had an initial PSMA PET Scan in November 2015.  I am waiting for a second follow scan that has been delayed due to shortages of the pharmaceutical required for the scan.

I would be grateful if anyone could send me details of any clinics (inside or outside of the UK) that are currently offering these scans.

Cheers, Tony

User
Posted 25 Jun 2016 at 14:50

PET scans it seems are not readily offered. I had my C11 CholinePET scan at Oxford Churchill hospital by the NHS and have been offered a second one before year end. I asked if it could be. PSMA but was told that it is still a trial and not available to me. I think a member on this site flew to Munich to get the superior PSMA scan. The Choline tracer is also very hard to come by and my scan was cancelled twice. It is hard to produce , and then has to be driven to the hospital. It has very short radioactive half-life , so it's difficult to get everything right.

User
Posted 25 Jun 2016 at 18:09
Hi

I had my PSMA scan in Munich http://www.mri.tum.de/node/555.

Hope it helps

Roy

User
Posted 25 Jun 2016 at 20:15

Hi amx
I thought you could only get the PSMA in two hospitals in Germany and a private clinic in London so things must be moving on. If the tracer for PSMA is in short supply, might you meet the criteria for the FACBC trial? John was offered it before it got started but then when the criteria were published he didn't meet the threshold. It is available to men with relapsed PCa after radical treatment so if that's you, worth asking perhaps?

Edited to add the link for FACBC trial but shocking to read towards the end that 35% of men go on to have a recurrence at some point after radical treatment :-0

http://www.blueearthdiagnostics.com/blue-earth-diagnostics-begins-fluciclovine-18f-studies-in-recurrent-prostate-cancer-patients/

Edited by member 25 Jun 2016 at 20:47  | Reason: Not specified

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

User
Posted 22 Dec 2017 at 21:41

http://www.prostatakrebse.de/informationen/pdf/PSMA-Kliniken.pdf

In Germany you can have a PSMA-PET/CT in every larger clinic with department of nuclear medicine. It becomes very popular in the last 3 years.

User
Posted 23 Dec 2017 at 04:08

The 68 Gallium scan will set you back circa £2,700 in Munich, or UCLH in London quoted at £2,200 when I asked quite recently. The figure quoted by the Royal Marsden was £3,700. Am advised this scan is available in Melbourne Australia for circa 800 Australian Dollars, some other towns there slightly more and others a little less. So for what you would have to pay in Europe for this scan you could pay your flights to OZ, have the scan and a short holiday!.

Australia and New Zealand seem to be quite fortunate as the tracer for the 18F DCFPyL scan developed at John Hopkins in the US is being manufactured locally for distribution. (In a small study it showed all the mets seen in a group of patients using the 68 Gallium scan, plus some additional mets in some cases in the same group).  I have not as yet found out the cost there for this particular scan. http://www.cyclotek.com/prostate-tracers-18fdcfpyl-and-68gapsma-hbed-cc-comparison/

 

 

Edited by member 23 Dec 2017 at 13:07  | Reason: Not specified

Barry
 
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