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Psma testing

User
Posted 03 January 2017 15:00:42(UTC)
Hi
Has anyone have any info on Psma testing ?
Does it pick up the smallest of cancer cells , the reason I ask is I m in a bit of no mans land with my current result not high enough to treat but not sure if the reading is a result of other organs producing pas
Thanks
John
User
Posted 06 February 2017 19:31:13(UTC)

Hi everyone
Have been told today it's unlikely I will be funded for PSMA PET even though I am funded for CHOLINE PET. But apparently I have the right to choose my treatment wherever I want in the country. My best bet is to insist on PSMA and refuse Choline scan. So I'm firing an email off and see what happens. Surely there can't be a major cost difference in the two scans apart from the tracing agent ?? I've asked for private cost too. If I'm going to have another PET scan then I'm damn well going to get the gold standard. I'm stamping my feet !!




If life gives you lemons , then make lemonade
Thanked 4 times
User
Posted 03 January 2017 22:32:29(UTC)

Interested to have a link to the trials you are referring to Lyn as I read

Conclusion:

Hybrid
68
Ga-PSMA ligand PET/CT shows substan-
tially higher detection rates than reported for other imaging mo-
dalities. Most importantly, it re
veals a high number of positive
findings in the clinically important range of low PSA values (
,
0.5
ng/mL), which in many cases can substantially influence the
further clinical management. Here is the link. https://www.snmmi.org/fi...8-74_1430513550878_2.pdf
also,

Review

Received: 25 March 2016

Accepted: 16 May 2016

Published: 8 June 2016
Abstract

Recently, positron emission tomography (PET) imaging using PSMA-ligands has gained high attention as a promising new radiotracer in patients with prostate cancer (PC). Several studies promise accurate staging of primary prostate cancer and restaging after biochemical recurrence with 68Ga-PSMA ligand Positron emission tomography/computed tomography (PET/CT). However, prospective trials and clinical guidelines for this new technique are still missing. Therefore, we summarized our experience with 68Ga-PSMA ligand PET/CT examinations in patients with primary PC and biochemical recurrence. It focuses on the technical and logistical aspects of 68Ga-PSMA ligand PET/CT examination as well as on the specific background for image reading discussing also potential pitfalls. Further, it includes relevant issues on free-text as well as structured reporting used in daily clinical routine.
Keywords
Prostate cancer Prostate specific membrane antigen Positron emission tomography
Background

Prostate cancer (PC) represents the most common cancer in men and accounts for the third most cause for cancer-associated death in men [1]. Early detection of primary disease and its metastases is highly relevant in terms of prognosis and therapy management. Primary staging with conventional imaging modalities such as computed tomography (CT) or magnetic resonance imaging (MRI) is limited as these techniques focus on morphologic information and LN involvement is mainly assessed by size. Up to 50 % of all patients undergoing radical prostatectomy (RP) or radiotherapy (RT) for primary treatment of PC develop biochemical recurrence [2, 3, 4]. Therefore, precise diagnosis of recurrence is crucial for patient counselling and treatment selection. However, the limited accuracy of CT or MRI in the detection of local disease in patients with biochemical recurrence is well appreciated [5, 6].

Positron emission tomography/computed tomography (PET/CT) as a hybrid imaging technique combining functional and morphological information has been proven to exhibit high diagnostic accuracy and is increasingly established as the primary staging tool in PC and in patients with suspicious recurrent disease. Several radiotracers have been proposed for molecular imaging of PC including choline as a marker of membrane cell proliferation. For recurrent PC, choline based (i.e. either 18F-Choline or 11C-Choline) PET/CT is currently widely used in clinical routine, however, there have been numerous studies reporting a low sensitivity and specificity [7, 8]. Especially in patients with prostate-specific antigen (PSA)-values below 3 ng/ml the detection rate is reported to be only 40–60 % [9, 10, 11].

Other radiotracers evaluated for PC include 11C-Acetate and 18F-FACBC. 18F fluciclovine, a radiolabeled leucine analog (1-amino-3-fluorocyclobutane-1-carboxylic acid in the ‘anti’ configuration [18F FACBC]), is used to depict amino acid transportation and has been found to be successful in the assessment of primary and metastatic PC showing also statistically significant superior detection rates in comparison to 11C-Choline PET [12, 13, 14]. 11C-Acetate is used as a PET radiotracer for imaging PC via incorporation into intracellular phosphatidylcholine membrane microdomains in cancer cells.
Current clinical and scientific evidence for 68Ga-PSMA ligand PET/CT and potential indications

The prostate specific membrane antigene (PSMA) is a transmembrane protein with significantly elevated expression in PC cells compared to benign prostatic tissue. So far, several, mainly retrospective studies describe the value of 68Ga-PSMA ligand PET/CT in different clinical scenarios. All of them demonstrate a higher diagnostic efficacy of 68Ga-PSMA ligand PET/CT compared to conventional imaging including PET with other tracers (e.g. 18F-Choline, 11C-Choline) [7, 15, 16, 17, 18, 19]. In particular, 68Ga-PSMA ligand PET/CT promises accurate staging of primary PC and re-staging after biochemical recurrence. In a large study in primary intermediate to high-risk PC, 68Ga-PSMA-ligand imaging has been reported to clearly improve detection of lymph node metastases compared to morphological imaging thus potentially allowing for a more tailored therapeutic concept [16].

Similar encouraging results were obtained for patients with biochemical recurrence after radical prostatectomy [17]. Here, 68Ga-PSMA ligand PET imaging has been shown to increase detection of metastatic sites even at low PSA-values in comparison to conventional imaging or PET examination with different tracers [7]. More specifically, in a study of Afshar-Oromieh et al. 68Ga-PSMA ligand PET/CT detected 78 lesions characteristic for recurrent PC in 32 patients while 18F-fluoromethylcholine PET/CT detected only 56 lesions in 26 patients resulting in a significant higher detection rate for 68Ga-PSMA ligand PET/CT [7]. The advantage of 68Ga-PSMA ligand PET is especially evident in patients with low PSA levels (PSA below 1 ng/ml). A recent study reported a detection rate of 73 and 58 % in patients with biochemical recurrence after radical prostatectomy in a PSA-range of 0.5–1.0 ng/ml and 0.2–0.5 ng/ml, respectively [17]. This facilitates the use of salvage procedures (e.g. secondary lymphadenectomy, targeted radiation therapy) with a potentially curative intent [20]. Although 68Ga-PSMA ligand PET seems to have an edge over morphological imaging in patients with PC, the evaluation of PSMA-negative PC comprising around 8 % of the examined patients remains a challenge [16].
In nuclear medicine, bone imaging with 99mTc-phosphonates plays an important role in the management of PC patients according to current guidelines providing a fast whole-body overview evaluating the presence of bone metastases. Preliminary results from our department indicate that the detection rate of 68Ga-PSMA ligand PET/CT is clearly superior to traditional bone scan xaminations. It focuses on the technical and logistical issues as well as on the specific background for image reading with an emphasis on the PET-part since contrast enhanced computed tomography as the second part of a hybrid 68Ga-PSMA ligand PET/CT examination is an already very standardized and common imaging technique.
Synthesis, application and imaging protocol of 68Ga-PSMA ligand PET/CT

A number of different PSMA-targeted PET tracers have been developed [24, 25, 26, 27]. The most widely used PSMA-ligand for PET-imaging in Europe is a 68Ga-labelled PSMA inhibitor Glu-NH-CO-NH-Lys(Ahx)-HBED-CC (68Ga PSMA HBED-CC) followed by the theranostic agent 68Ga-labelled PSMA I&T [26, 27]. Details on the synthesis of 68Ga-labelled PSMA HBED-CC and 68Ga-labelled PSMA I&T have been described previously [27, 28]. Here is a link to the article https://cancerimagingjou...0.1186/s40644-016-0072-6

The 68 Gallium PSMA scan developed in Heidelberg and shown to be superior to the Chlorine one is now available in other European countries and at UCLH in the UK. It may well be available at other UK hospitals by now.


Barry
Thanked 1 time
User
Posted 05 January 2017 10:49:23(UTC)

UCLH have confirmed they do this scan with a wait of 4 weeks , so I'm chasing Onco now !


But as ever it looks like a funding thing !!



If life gives you lemons , then make lemonade
Thanked 1 time
Show Most Thanked Posts
User
Posted 03 January 2017 17:54:12(UTC)

The trials found it to be less helpful than hoped but if used in conjunction with high level body scanning may have some uses in relation to diagnosing / pinpointing recurrence.

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


User
Posted 03 January 2017 18:47:33(UTC)

I am soon to go for a second C11 Choline PET scan at Oxford.
In trials PSMA used as a tracing / indicator injection has given significant improvements over Choline apparently , but although I asked for it I was denied as it is still at trial stage ? One of our members went to Munich privately for a PSMA PET scan I believe.
I too am rapidly producing PSA ever since radical prostatectomy , but it's location or source cannot be found. Hopefully next scan will provide some answers !




If life gives you lemons , then make lemonade
User
Posted 03 January 2017 22:32:29(UTC)

Interested to have a link to the trials you are referring to Lyn as I read

Conclusion:

Hybrid
68
Ga-PSMA ligand PET/CT shows substan-
tially higher detection rates than reported for other imaging mo-
dalities. Most importantly, it re
veals a high number of positive
findings in the clinically important range of low PSA values (
,
0.5
ng/mL), which in many cases can substantially influence the
further clinical management. Here is the link. https://www.snmmi.org/fi...8-74_1430513550878_2.pdf
also,

Review

Received: 25 March 2016

Accepted: 16 May 2016

Published: 8 June 2016
Abstract

Recently, positron emission tomography (PET) imaging using PSMA-ligands has gained high attention as a promising new radiotracer in patients with prostate cancer (PC). Several studies promise accurate staging of primary prostate cancer and restaging after biochemical recurrence with 68Ga-PSMA ligand Positron emission tomography/computed tomography (PET/CT). However, prospective trials and clinical guidelines for this new technique are still missing. Therefore, we summarized our experience with 68Ga-PSMA ligand PET/CT examinations in patients with primary PC and biochemical recurrence. It focuses on the technical and logistical aspects of 68Ga-PSMA ligand PET/CT examination as well as on the specific background for image reading discussing also potential pitfalls. Further, it includes relevant issues on free-text as well as structured reporting used in daily clinical routine.
Keywords
Prostate cancer Prostate specific membrane antigen Positron emission tomography
Background

Prostate cancer (PC) represents the most common cancer in men and accounts for the third most cause for cancer-associated death in men [1]. Early detection of primary disease and its metastases is highly relevant in terms of prognosis and therapy management. Primary staging with conventional imaging modalities such as computed tomography (CT) or magnetic resonance imaging (MRI) is limited as these techniques focus on morphologic information and LN involvement is mainly assessed by size. Up to 50 % of all patients undergoing radical prostatectomy (RP) or radiotherapy (RT) for primary treatment of PC develop biochemical recurrence [2, 3, 4]. Therefore, precise diagnosis of recurrence is crucial for patient counselling and treatment selection. However, the limited accuracy of CT or MRI in the detection of local disease in patients with biochemical recurrence is well appreciated [5, 6].

Positron emission tomography/computed tomography (PET/CT) as a hybrid imaging technique combining functional and morphological information has been proven to exhibit high diagnostic accuracy and is increasingly established as the primary staging tool in PC and in patients with suspicious recurrent disease. Several radiotracers have been proposed for molecular imaging of PC including choline as a marker of membrane cell proliferation. For recurrent PC, choline based (i.e. either 18F-Choline or 11C-Choline) PET/CT is currently widely used in clinical routine, however, there have been numerous studies reporting a low sensitivity and specificity [7, 8]. Especially in patients with prostate-specific antigen (PSA)-values below 3 ng/ml the detection rate is reported to be only 40–60 % [9, 10, 11].

Other radiotracers evaluated for PC include 11C-Acetate and 18F-FACBC. 18F fluciclovine, a radiolabeled leucine analog (1-amino-3-fluorocyclobutane-1-carboxylic acid in the ‘anti’ configuration [18F FACBC]), is used to depict amino acid transportation and has been found to be successful in the assessment of primary and metastatic PC showing also statistically significant superior detection rates in comparison to 11C-Choline PET [12, 13, 14]. 11C-Acetate is used as a PET radiotracer for imaging PC via incorporation into intracellular phosphatidylcholine membrane microdomains in cancer cells.
Current clinical and scientific evidence for 68Ga-PSMA ligand PET/CT and potential indications

The prostate specific membrane antigene (PSMA) is a transmembrane protein with significantly elevated expression in PC cells compared to benign prostatic tissue. So far, several, mainly retrospective studies describe the value of 68Ga-PSMA ligand PET/CT in different clinical scenarios. All of them demonstrate a higher diagnostic efficacy of 68Ga-PSMA ligand PET/CT compared to conventional imaging including PET with other tracers (e.g. 18F-Choline, 11C-Choline) [7, 15, 16, 17, 18, 19]. In particular, 68Ga-PSMA ligand PET/CT promises accurate staging of primary PC and re-staging after biochemical recurrence. In a large study in primary intermediate to high-risk PC, 68Ga-PSMA-ligand imaging has been reported to clearly improve detection of lymph node metastases compared to morphological imaging thus potentially allowing for a more tailored therapeutic concept [16].

Similar encouraging results were obtained for patients with biochemical recurrence after radical prostatectomy [17]. Here, 68Ga-PSMA ligand PET imaging has been shown to increase detection of metastatic sites even at low PSA-values in comparison to conventional imaging or PET examination with different tracers [7]. More specifically, in a study of Afshar-Oromieh et al. 68Ga-PSMA ligand PET/CT detected 78 lesions characteristic for recurrent PC in 32 patients while 18F-fluoromethylcholine PET/CT detected only 56 lesions in 26 patients resulting in a significant higher detection rate for 68Ga-PSMA ligand PET/CT [7]. The advantage of 68Ga-PSMA ligand PET is especially evident in patients with low PSA levels (PSA below 1 ng/ml). A recent study reported a detection rate of 73 and 58 % in patients with biochemical recurrence after radical prostatectomy in a PSA-range of 0.5–1.0 ng/ml and 0.2–0.5 ng/ml, respectively [17]. This facilitates the use of salvage procedures (e.g. secondary lymphadenectomy, targeted radiation therapy) with a potentially curative intent [20]. Although 68Ga-PSMA ligand PET seems to have an edge over morphological imaging in patients with PC, the evaluation of PSMA-negative PC comprising around 8 % of the examined patients remains a challenge [16].
In nuclear medicine, bone imaging with 99mTc-phosphonates plays an important role in the management of PC patients according to current guidelines providing a fast whole-body overview evaluating the presence of bone metastases. Preliminary results from our department indicate that the detection rate of 68Ga-PSMA ligand PET/CT is clearly superior to traditional bone scan xaminations. It focuses on the technical and logistical issues as well as on the specific background for image reading with an emphasis on the PET-part since contrast enhanced computed tomography as the second part of a hybrid 68Ga-PSMA ligand PET/CT examination is an already very standardized and common imaging technique.
Synthesis, application and imaging protocol of 68Ga-PSMA ligand PET/CT

A number of different PSMA-targeted PET tracers have been developed [24, 25, 26, 27]. The most widely used PSMA-ligand for PET-imaging in Europe is a 68Ga-labelled PSMA inhibitor Glu-NH-CO-NH-Lys(Ahx)-HBED-CC (68Ga PSMA HBED-CC) followed by the theranostic agent 68Ga-labelled PSMA I&T [26, 27]. Details on the synthesis of 68Ga-labelled PSMA HBED-CC and 68Ga-labelled PSMA I&T have been described previously [27, 28]. Here is a link to the article https://cancerimagingjou...0.1186/s40644-016-0072-6

The 68 Gallium PSMA scan developed in Heidelberg and shown to be superior to the Chlorine one is now available in other European countries and at UCLH in the UK. It may well be available at other UK hospitals by now.


Barry
Thanked 1 time
User
Posted 04 January 2017 16:23:24(UTC)

I am due a Choline PET scan in the next six weeks and saw my Onco today. I asked directly for a PSMA scan but he said trials are over and being assessed at present. He agrees the outlook seems good , and that very high calibre imaging is without doubt the best hope for people like myself with oligo-metastases. Now I want to phone him and suggest UCLH but he said he would know if it was available??




If life gives you lemons , then make lemonade
User
Posted 04 January 2017 19:39:30(UTC)

Hi Chris,

You will recall the experience of Roy in this thread http://community.prostat...3-PET-CT-SCAN#post117114

I will take the opportunity of asking Prof E at my appointment at UCLH next month if they are still doing the 68 Gallium test as my consultant at UCLH had previously told me it was available there.

I am sure with the time you have spent on this forum that you are aware that you sometimes have to be a bit pushy to get what is not generally available.

Hope whatever scans you have prove helpful.

Barry
User
Posted 04 January 2017 20:14:39(UTC)

Barry thanks , I am going to chase this for sure. Having had one Choline PET already at approx psa 2.2 I'm not in a rush to have another at psa 3
It is obvious to all I have psa producing tumors that aren't going to go away. Choline PET only picks up tumorurs bigger than 6 to 7 mm whereas PSMA can pick up minute tumours apparently. If I'm going to have it done again I want the best job possible even if I have to pay for it. Also with the last scan it was cancelled twice , the second time I was 70 miles up the motorway.
Thanks for replying




If life gives you lemons , then make lemonade
User
Posted 05 January 2017 10:49:23(UTC)

UCLH have confirmed they do this scan with a wait of 4 weeks , so I'm chasing Onco now !


But as ever it looks like a funding thing !!



If life gives you lemons , then make lemonade
Thanked 1 time
User
Posted 06 February 2017 19:31:13(UTC)

Hi everyone
Have been told today it's unlikely I will be funded for PSMA PET even though I am funded for CHOLINE PET. But apparently I have the right to choose my treatment wherever I want in the country. My best bet is to insist on PSMA and refuse Choline scan. So I'm firing an email off and see what happens. Surely there can't be a major cost difference in the two scans apart from the tracing agent ?? I've asked for private cost too. If I'm going to have another PET scan then I'm damn well going to get the gold standard. I'm stamping my feet !!




If life gives you lemons , then make lemonade
Thanked 4 times
User
Posted 06 February 2017 20:55:27(UTC)

Good for you. Fingers crossed you get what you want.

User
Posted 06 February 2017 22:31:17(UTC)

Yes indeed.., choice means choice!

Go for it!

User
Posted 06 February 2017 23:41:05(UTC)
Originally Posted by: Online Community Member

Interested to have a link to the trials you are referring to Lyn as I read .... p>




Sorry, I missed this Manwith - but I think we are referring to the same sets of findings - conclusions that PSMA is most useful in diagnosing / pinpointing recurrence at very low PSA. The earliest trials hoped that isolating PSMA would lead to new treatments but that doesn't seem to have got off the ground.

CJ, fingers crossed x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 07 February 2017 13:34:19(UTC)

The answer is no haha but my Uro and Onco writing to my doc asking him to refer me. All politics. There's a slight chance the tab will be picked up by the NHS at London but the scan costs £1800 and I am more than willing to pay this. After all my reading the evidence is that it will be far more conclusive so we can tailor treatment properly and effectively.




If life gives you lemons , then make lemonade
User
Posted 04 November 2017 00:11:41(UTC)

By opportunity of this thread I would be grateful if anybody could tell me if they know of any hospitals in the UK (other than UCLH and the Marsden) who have the 68 Gallium PSMA test for private patients and if known the cost. (I may have to go this route or to Germany as UCLH declined to offer me the scan on the NHS notwithstanding I am still a patient there following HIFU). The reasoni is they would not give me any further radical treatment, only HT regardless of wherever a scan showed PCa. I might be able to have the scan as a private patient there circa £2,200 or at the Marsden £3,077 plus a subsequent consultant's fee, ( priced yesterday). Hopefully, another hospital in the UK would prove less costly?? Some patients from the USA report they are having the scan at one of several hospitals in Australia at a fraction of the above quoted figures but my wife has developed a phobia about airports and flying, particularly long distance and I would not go without her as she is becoming increasingly dependent on me - another reason why I need to maximize my lifespan.

Barry
User
Posted 04 November 2017 00:38:42(UTC)

Are you quite determined on the G68 Barry? Would you not consider the FACBC instead? You probably remember that after a false start John didn't meet the criteria but you might?


"For anyone interested, this is the report on FACBC which has had great results in Italy and is now being trialled at a small number of hospitals in England (but again, with very narrow criteria)


https://tinyurl.com/y9uw3ukb
"

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


User
Posted 04 November 2017 03:16:10(UTC)

Yes Lyn! but thank you for reminding me about FACBC and for the link, although this does not make a comparison with the PSMA test which this link does and it is well referenced. https://www.ncbi.nlm.nih...pmc/articles/PMC4171844/

I am only a lay person as you are aware so have to base my judgement on what I read from good sources and just about all who include or speak of the PSMA test using the radio tracer 68 Gallium put it at the top for those with likely recurrence of PCa. There is another scan used by a hospital in the Netherlands which seems to be highly rated by members on a US forum and some of their oncologists. The cost of this scan was reported as being about 4K there and the facility recommend the 68 Gallium PSMA scan be done too which costs a further 2K. When I find the link again I will add it out of interest.

Before taking up the offer of University Hospital Heidelberg to have the PSMA scan there (I am already past the 0.7 PSA they suggested I have this scan and more RT treatment if they can identify the source), I will ask my Dr to refer me back to the Marsden who suggested I could do this if my PSA continued to rise. They might give me the PSMA scan on the NHS if they think differently about further treatment, perhaps Cyberknife. I would't expect them to do this scan if like UCLH they would only suggest HT regardless.

PS The centre in the Netherlands is Radbond University Medical Centre, Nijmegen Netherlands and the scan is called Iron Nano (formerly Combidex) It is said to be particularly good for finding lymph node metastases as small as 2 mm.  I have not looked into this one.....yet!

Barry
User
Posted 04 November 2017 07:41:13(UTC)

I think there is a Birmingham prostate clinic which is private that offers the PSMA Barry. It ain’t fool-proof and my scan was still negative even though my psa is now over 7. We simply don’t understand unless all my nets are micro in my lymph system. After all the PET scan palavers I’ve had , I have little faith in the tracer Ligands being delivered in the right condition




If life gives you lemons , then make lemonade
User
Posted 04 November 2017 11:33:59(UTC)

Thank you for your suggestion Chris. I believe you may be thinking of the Birmingham Prostate Clinic but their patients go to Germany for the PSMA scan - our member Roy was one of them and he had his scan in Munich. https://www.birminghamprostateclinic.co.uk/prostate/assessments/pet-scans-for-prostate-cancer/ However, one of their consultants is also at the Q E  Birmingham with whom I have a link having had a second opinion there when I was originally diagnosed.  He has stated how impressed he was by the quality of the scan done in Germany so he may have persuaded the Q E to do it now, something I will check on.

Sorry all the scans you have had have not provided more definitive information for you. Like many other aspects of PCa, different things seem to work better for some patients than others and when it comes to scans you don't know until after you have them.

Barry
Thanked 1 time
User
Posted 04 November 2017 13:10:15(UTC)
Hi Barry

As you probably know I am being treated at the QE Birmingham and know the person you are referring to and am aware he and his colleagues have tried to persuade the trust as to the advantage of PSMA but as always money talks and it hasn't been adopted yet as far as I know. The PET/CT scan is carried out by a private company on campus and is attached to the Cancer Centre, so whether they can obtain the Gallium I don't know.

All the best

Roy
User
Posted 08 February 2018 00:06:14(UTC)

I received a letter from the Marsden today in which contrary to the view expressed by UCLH, they agree a 68 Gallium PSMA scan would be my best way forward but say that cannot offer it on the NHS yet, although they hoped to be able to do so later this year. Meanwhile, they have offered a choline pet/ct scan instead. Also, they say that if the cancer is as believed to be in the suspect node they "would be amenable to further radiotherapy", whereas the UCLH would only offer HT.

As I have mentioned previously, the cost of the 68 Gallium Psma scan done privately would be Circa three thousand pounds at the Marsden but two thousand two hundred at UCLH privately so I might have to mix and match! Meanwhile, I will contact Heidelberg Uni Hosp and ascertain whether they will give me a better price bearing in mind I had my original RT there. Might also ring Birmingham QE to see if any possibility there yet.

Barry
User
Posted 08 February 2018 07:07:52(UTC)

Hi Barry , as you know I was eventually given PSMA PET at UCLH via Southampton NHS. I was the first from there to have one and I guess my case was out of the ordinary. However I’m sure I heard the words that the PSMA was a cheaper scan anyway than the Choline at Oxford. Maybe worth looking into to fight your corner ?




If life gives you lemons , then make lemonade
User
Posted 08 February 2018 15:20:15(UTC)

Thanks Chris,

I am aware that the cost of some treatments including scans and work ups are often borne by those sponsoring 'trials' that patients take part in but am not sure who picks up the tab outside of trials if scans and or treatment is wanted in other districts outside the area of the trust where the patient is domiciled. When the Marsden in Surrey say they will give me a Choline scan within the NHS is it implicit that because my GP referred me that Devon trust or whatever they call themselves will be charged? Unfortunately, the Marsden don't do the 68 Gallium scan yet within the NHS. Does this mean that if I could get my GP to refer me to the Marsdon or the London Clinic as a private patient where I could have the scan the Marsden said would be best for me, that my GP would be committing said Devon Trust to pay the bill? Does my GP first have to seek approval of his Trust? It would of course have been more straight forward if UCLH had agreed to do the scan within the NHS but they have have already said they would not although they have the ability to do so and would be interested to see the scan if done elsewhere.  (I am fed up with the way the NHS works!  How much easier to have only a system where you pay insurance and can choose to have your treatment where you decide, I say as I duck to avoid the flak!) Not surprising why we are well down the league of industrialised countries for cancer mortality rates with postal code variation and passing to and fro for treatment approval)..

I have a telephone appointment with my GP tomorrow afternoon and would appreciate further information regarding the way the system works so I may know in advance how hard I can twist my GP's arm.

Barry
User
Posted 08 February 2018 16:43:05(UTC)

Just followed up by contacting Paul Strickland Centre Walter (Ulsterman ) mentioned elsewhere as providing the 68 Gallium PSMA scan both privately and on the NHS). They say they do not take referrals from GP's only consultants so I am now in the position where I can ask my GP to ask a consultant at the Marsden if they will refer me to the Paul Strickland Centre for the scan within the NHS, hopefully not having to get the GP to first obtain approval from the Devon Trust. What a palaver!

Barry
User
Posted 08 February 2018 22:13:34(UTC)

Sounds familiar. When I insisted I would pay privately for a PSMA because I wanted better than another Choline , I needed a referral. My Onco and Uro would NOT refer me as that would make them liable for the bill. They asked me to ask my GP for a referral and he just laughed and said he couldn’t order that scan ( he’d never even heard of it lol ). So it went back and forth a while and it went to a hospital higher management meeting , and then they agreed to fund it. I suppose I was young and presenting differently so I was a bit of a guinea pig !! Not sure if they still using PSMA after my no-show if results.




If life gives you lemons , then make lemonade
User
Posted 14 March 2018 15:00:41(UTC)

Had a copy of a letter today dated 13th March 2018 addressed to my consultant at The Royal Marsden from Mount Vernon Cancer Centre. (I got referred to them as 'Ulsterman' said elsewhere that they did the 68 Gallium PSMA scan privately and for NHS Patients). Unfortunately, the latter is not the case and on checking with the centre today, they confirmed it has never been provided for NHS patients. I feel I have to record this lest others make the same mistake.

However, the scan can be had privately at their Paul Strickland Scanner Centre circa £2,400, something I am considering.

It seems to me that because so few hospitals in the UK have this scan at present, they can ask pretty much what they like. In Australia, where there are quite a number of centres offering it, the cost is around £1,000. It's getting like insurance where you have to get comparative quotes.

Barry
User
Posted 15 March 2018 12:04:53(UTC)
Barry

Mount Vernon Cancer Centre and the Strickland Scanner Centre are two different things. The Strickland Centre is an independent charity which works from a building at Mount Vernon, but it is not part of the hospital trust.

I had my Choline pet scan there. I was told that as it was a referral from my NHS consultant, they charge my trust actual costs. If I had been referred privately, it costs more. My NHS oncologist assumed it would be the same for the PSMA scan. As I ended up at the London Clinic, I don't know what the reality is.

The good thing though is that we have yet another place offering PSMA scans.

Ulsterman

User
Posted 15 March 2018 14:01:49(UTC)

Thank you for trying to be helpful Walter,

Although the reply came from Mount Vernon Hospital, the information provided was based on their liaison with The Paul Strickland Scanner Centre. I subsequently checked directly with the actual Scanner Centre who confirmed that they do not do, nor ever have done this scan on the NHS. Somewhat buried under news on their web site they do say that that don't provide this scan for NHS patients as in the narration below scan pictures here :- http://www.stricklandsca...s-and-views/archive/psma

I am now in the rather embarrassing position whereby I have to apologize to my GP and consultant for asking them to refer me for the scan on the NHS having told them they did offer this.

In the circumstances, I have now set in train having the scan done privately there at the quoted figure of £2,400.

Barry
User
Posted 15 March 2018 16:01:08(UTC)

I’m sure you remember my PSMA PET was done eventually by Southampton NHS completely free of charge at UCLH !! ??
So it can happen I guess. Maybe I was just a test case !




If life gives you lemons , then make lemonade
User
Posted 15 March 2018 20:47:15(UTC)
Barry

They quoted my NHS trust just over £4000 to do it, according to my consultant, so I don't know what's going on. They only started offering PSMA scans a few weeks ago so maybe there has been some erroneous communication with my trust as your research seems to be a more accurate statement of what they offer.

Ulsterman
User
Posted 15 March 2018 22:45:22(UTC)

UCLH seem to be the exception Chris. They could have given me the PSMA scan whilst I was under their care following my NHS HIFU treatment but declined to do so because they said that I would be just treated with HT regardless of what this scan showed, so reasoned that the scan would serve no purpose. However, the Marsden did think the scan would be useful, because it could mean that if the cancer was indeed shown to be in my iliac node, there was the possibility of them treating it with further RT. Unfortunately, the Marsden told me they were unable to treat NHS patients with this scan yet but hoped to be able to do so later this year.

So there is now the ironical situation that UCLH believe from the Choline scans of 2015 that the aforementioned node is cancerous but will not treat it specifically. On the other hand the Marsden are not convinced it is cancerous but if more positively identified may well treat it directly!

Barry
Thanked 1 time
User
Posted 03 April 2018 23:00:54(UTC)
Having just finished “hopefully targeted prostate bed SRT” I really wish I had known about and sought psma testing as I (and my oncologist) have no idea where the recurrence is

But hey ho - let’s hope it’s the prostrate bed
User
Posted 04 April 2018 08:28:51(UTC)
KB

Roughly this time last year I was having discussions with my urologist and oncologist about PSMA testing and neither would do it. The onco said it was a very educated guess based on experience and PSA rise that the remaining cells were in the bed. Post SRT the PSA went down to 0.04 but had a slight rise to 0.06. so yet again another wait to see what happens.

Thanks Chris
User
Posted 04 April 2018 09:35:37(UTC)

Bill, your PSA trend is classic for stray cells left behind in the prostate bed.

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


Thanked 1 time
User
Posted 04 April 2018 09:50:28(UTC)
Originally Posted by: Online Community Member

Bill, your PSA trend is classic for stray cells left behind in the prostate bed.



Well that’s good to hear Lyn

Here’s a more optimistic man 👍
User
Posted 05 April 2018 22:02:51(UTC)

Came upon this video which shows what a game changer the 68 Gallium PSMA scan be in determining treatment plans for many men, plus being used with Lu177 PSMA-617 instead of 68 Gallium to attack cancer cells. The introductory remarks are basic but there is some interesting stuff in this simply expressed lecture. https://www.youtube.com/watch?v=mFtMaGT0Sdc


Barry
 
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