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pauldhodson

Somatic Genetic Test of Prostate Tissue in Australia

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pauldhodson

Hey Guys,

 

I am interested in getting a comprehensive genetic test. From what I understand, the best test available is called a 'somatic' genetic test, offered by a USA company called Foundation One. They take a specimen of cancerous prostate tissue and do what's called a 'somatic' test where they screen for 360 genetic malfunctions, which would not appear on a blood test. The idea being that once you have your 'Genetic Sequence' you can push for more targeted therapy.

 

Has anyone in Australia been through this testing? I am keen to get it done and I will travel to the US if necessary, but ideally, I would have a tissue biopsy taken in my home city of Perth, which could be shipped out to one of the Foundation One labs in the US.

 

I did read somewhere that somatic genetic testing would become available in the next 12 months at my local hospital Sir Charles Gairdner Hospital in Perth, but I can't find the article. I may be getting radiation to the prostate, for the first time in the next few months, ahead of getting Lutetium177 infusions, so I'm not sure I can wait around for the hospital system to start offering this testing, as I understand, it's way better to get a test done before the prostate has been irradiated.

 

Any experiences any of you guys have had in this area, I would be glad to hear about. If anyone knows of any comprehensive genetic sequencing being offered in Australia, I'd love to hear about it. I did have a genetic test about 1 year ago, but it was purely from a blood sample and they only screened for 12 genetic errors, such as the BRCA1/2. Apparently the Foundation One test checks for 360+ genetic errors.

 

Cheers

Paul

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alanbarlee

Hi Paul,

I can't add anything on the availability of PCa-specific genetic testing in Oz - but 'somatic' refers to sampling a tumour (metastasised or local), which is likely to have mutated away from your original germline genome.

We'll be very interested to follow your journey down this new road!

Cheers,

Alan 

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Charles (Chuck) Maack

Hello Paul,

You may want to open and read information in this url https://tinyurl.com/y7hpq3ja from the University of Texas Southwestern Medical Center with subject “Genetic Testing: Guide for Health Pros” where you can click on the words “Somatic Tumor Testing.” It appears there may be some difficulty in deciphering the information provided from the test by most physicians.  And I have no idea what the cost may be for anyone ordering the test. Always be cautious when considering ordering tests whether they will actually provide you and your physician sufficient information that might benefit your treatment options.

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pauldhodson
1 hour ago, alanbarlee said:

Hi Paul,

I can't add anything on the availability of PCa-specific genetic testing in Oz - but 'somatic' refers to sampling a tumour (metastasised or local), which is likely to have mutated away from your original germline genome.

We'll be very interested to follow your journey down this new road!

Cheers,

Alan 

Thanks Alan, I'll keep you posted.

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pauldhodson
1 hour ago, Charles (Chuck) Maack said:

Hello Paul,

You may want to open and read information in this url https://tinyurl.com/y7hpq3ja from the University of Texas Southwestern Medical Center with subject “Genetic Testing: Guide for Health Pros” where you can click on the words “Somatic Tumor Testing.” It appears there may be some difficulty in deciphering the information provided from the test by most physicians.  And I have no idea what the cost may be for anyone ordering the test. Always be cautious when considering ordering tests whether they will actually provide you and your physician sufficient information that might benefit your treatment options.

 

Thanks, as always Chuck.

 

I made contact with a guy called Bryce Olson, in the US. I'm sure he won't mind me repeating his story here, see: https://www.forbes.com/sites/zinamoukheiber/2018/04/05/bryce-olson-wants-to-raise-awareness-about-precision-medicine-his-rallying-cry-sequence-me/#3ad77f092a27

 

Anyway, he arranged for his genetic sequencing via Foundation One and found that he had a rare genetic defect that could be treated with a certain drug and convinced his Oncologist to give it to him and it worked very well for a couple of years. He was only 44 when diagnosed stage IV. We young guys need to do all we can to stay ahead of the curve and stay alive, anything that can buy me a year or two more is worth looking into. I want to be around for my kids, while they grow up. My fear is that the standard of care won't be enough. Cheers Paul.

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Gary Thomas

Hi Paul,

 

My MO, Siobhan Ng, referred me for a germline test. The company is called Color Genomics. It is a saliva sample that tests for the 30 most common mutations. It found a Lynch mutation.

 

Regards,

Gary

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kezza

Hi Paul,

My MO in Brisbane has also asked me to test with Color, the kit just arrived this morning.

I've been on various treatment over the last 10 years  starting with radical prostatectomy then progressing through chemo, abiraterone and for the last 12 months Xtandi now my PSA is starting to  rise again.   What has your MO advised for you after finding out your new info, if you dont mind sharing?

Thanks Kezza

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Canook

Hi Paul,

 

The Peter Mac Centre started an Australian genomics program in July 2017 (https://www.petermac.org/about/signature-centres/centre-clinical-cancer-genomics/clinical-trials-central-testing) and are still playing catchup to Canadian research started in 2014 (http://www.cancergenomicsprogram.ca/about-cgp).  The UK just announced mandatory state-subsidised testing for all cancer patients legislated from 1st October 2018.  Full panel testing here in OZ currently costs four to five times overseas at the moment (~$6K).  No doubts that comprehensive testing plus a firm medical understanding of the interplay between various genetic flaws is a positive step towards individual treatments.  Canadian research has identified at least 200 "significant" gene defects in three distinct groups of prostate cancers plus a couple of thousand minor defects so not an easy task to unravel and understand the information from a diagnostic perspective.

 

David

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pauldhodson
4 hours ago, Gary Thomas said:

Hi Paul,

 

My MO, Siobhan Ng, referred me for a germline test. The company is called Color Genomics. It is a saliva sample that tests for the 30 most common mutations. It found a Lynch mutation.

 

Regards,

Gary

 

Thanks Gary, Siobhan sent me to a health department genetic service, where they did a blood test. It looked for 12 common mutations but found nil. Thanks for the info. Cheers Paul.

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pauldhodson
3 hours ago, kezza said:

Hi Paul,

My MO in Brisbane has also asked me to test with Color, the kit just arrived this morning.

I've been on various treatment over the last 10 years  starting with radical prostatectomy then progressing through chemo, abiraterone and for the last 12 months Xtandi now my PSA is starting to  rise again.   What has your MO advised for you after finding out your new info, if you dont mind sharing?

Thanks Kezza

 

I'm on Enzalutamide only at this stage, hoping to do Lutetium177 in Dec/January. Cheers Paul.

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pauldhodson
1 hour ago, Canook said:

Hi Paul,

 

The Peter Mac Centre started an Australian genomics program in July 2017 (https://www.petermac.org/about/signature-centres/centre-clinical-cancer-genomics/clinical-trials-central-testing) and are still playing catchup to Canadian research started in 2014 (http://www.cancergenomicsprogram.ca/about-cgp).  The UK just announced mandatory state-subsidised testing for all cancer patients legislated from 1st October 2018.  Full panel testing here in OZ currently costs four to five times overseas at the moment (~$6K).  No doubts that comprehensive testing plus a firm medical understanding of the interplay between various genetic flaws is a positive step towards individual treatments.  Canadian research has identified at least 200 "significant" gene defects in three distinct groups of prostate cancers plus a couple of thousand minor defects so not an easy task to unravel and understand the information from a diagnostic perspective.

 

David

 

Thanks Dave, I'll look into that. I read that testing would become available in Perth, but I want to get it before I have radiation, which is likely to be around November this year and I doubt if the Perth genetic testing will be available before then.

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Charles (Chuck) Maack

Hello again, Paul,

 

The article you provided mentions s FDA-approved FoundationOne CDx but I see no mention of the Somatic Tumor Testing you are considering.

 

Also, in the article you provided it appears Bryce Olson was able to get into several trial programs that resulted in his now heralding sequence testing, but again, I did not see his personal mention of FoundationOne testing. Rather, that was a testing now approved by the FDA here in the U.S. that was added to the article.

 

FoundationOne overview: https://tinyurl.com/yafgpas3

 

How to order a test: https://tinyurl.com/y7gvt699

 

Cost? Foundation does not typically disclose how much the companies will pay to cover its tests, but the amount will be something less than the price non-insured patients would have to pay for it, or $5,800 per test for FoundationOne and $7,200 for its test for blood cancers, FoundationOne Heme.

 

In the U.S. testing of FoundationOne CDx is now covered by Medicare (for its 80% of cost) only for late stage cancer.

 

Please note, Paul, that I am certainly on your side that you want to get the genomic testing that will be most effective in providing diagnostics that will enable an improvement in your personal situation. I just want to bring to your attention considerations before you jump to a testing procedure that may not be the right one. With the FDA having approved the test “FoundationOne CDx” it would appear that may be your better consideration.

 

Again, important to check if your health insurance would cover the cost, and if not, if FoundationOne provides financial assistance for those patients not having insurance coverage that will cover the Foundation One CDx testing. Certainly feel free to contact Bryce Olson to determine if he supports the FoundationOne CDx testing or can offer you other considerations.

 

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pauldhodson
13 hours ago, Charles (Chuck) Maack said:

Hello again, Paul,

 

The article you provided mentions s FDA-approved FoundationOne CDx but I see no mention of the Somatic Tumor Testing you are considering.

 

Also, in the article you provided it appears Bryce Olson was able to get into several trial programs that resulted in his now heralding sequence testing, but again, I did not see his personal mention of FoundationOne testing. Rather, that was a testing now approved by the FDA here in the U.S. that was added to the article.

 

FoundationOne overview: https://tinyurl.com/yafgpas3

 

How to order a test: https://tinyurl.com/y7gvt699

 

Cost? Foundation does not typically disclose how much the companies will pay to cover its tests, but the amount will be something less than the price non-insured patients would have to pay for it, or $5,800 per test for FoundationOne and $7,200 for its test for blood cancers, FoundationOne Heme.

 

In the U.S. testing of FoundationOne CDx is now covered by Medicare (for its 80% of cost) only for late stage cancer.

 

Please note, Paul, that I am certainly on your side that you want to get the genomic testing that will be most effective in providing diagnostics that will enable an improvement in your personal situation. I just want to bring to your attention considerations before you jump to a testing procedure that may not be the right one. With the FDA having approved the test “FoundationOne CDx” it would appear that may be your better consideration.

 

Again, important to check if your health insurance would cover the cost, and if not, if FoundationOne provides financial assistance for those patients not having insurance coverage that will cover the Foundation One CDx testing. Certainly feel free to contact Bryce Olson to determine if he supports the FoundationOne CDx testing or can offer you other considerations.

 

 

Thanks Chuck, Bryce mentioned that 'germline' testing (i.e. from blood) is limited to a handful of genetic mutations, whereas 'somatic' (i.e. from the tumor itself) can reveal up to 320 mutations, which is for more than for germline testing. I would be surprised if my insurance company would cover any of the cost of the testing, I'd have to pay for it myself. I just want to get the best understanding of what's driving my particular disease and if there is a targeted treatment that will help me live longer. Thanks again for your input.

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alanbarlee

Hi All,

Canook mentioned the recent genomic work going on at Peter Mac in Melbourne. I want to add that the Garvan Institute in Sydney has for some time been doing ground-breaking work in this domain that is focused on prostate cancer. Professor Vanessa Hayes leads a team that published some great work in April 2014, in which the complete genome of a prostate cancer tumour sample was mapped for the first time. Her team is also studying germline genomes of indigenous southern Africans compared with similar ethnic groups in the USA, where prevalance of PCa is double that of caucasians and latinos.

Garvan has an informative website, which is well worth tuning into.

Cheers,

Alan 

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pauldhodson

Thanks Alan, for that extra piece of news. When I asked my MO about Genetic Testing, she wasn't much help. Cheers Paul.

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Zak

Hi Paul

thanks for posting this question. I think targeted treatment is the way to go too.

 

you mentioned you hope to start Lutetium-177 later this year. I was wondering (1) why the delay, and (2) if you what the entitlement criteria is ( I have read lots of men would like to be on it but don't have access).

thanks.

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pauldhodson
42 minutes ago, Zak said:

Hi Paul

thanks for posting this question. I think targeted treatment is the way to go too.

 

you mentioned you hope to start Lutetium-177 later this year. I was wondering (1) why the delay, and (2) if you what the entitlement criteria is ( I have read lots of men would like to be on it but don't have access).

thanks.

 

Hi Zac, The delay is so that I can access the treatment via a clinical trial rather than pay $9,600/shot personally. I'm not sure of the criteria, but my specialist said he believes I can get on a trial coming up late this year/early next year. He also said that as I'm responding well to Enzalutamide, there is no rush. I tried to get onto a PhaseI a few months ago and I was deemed ineligible as I had low PSA and it needed to be above 20. Mine has never been above 20. Cheers Paul.

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