Hi. Can anyone direct me to an outline of these in the context of advanced prostate cancer? I assume for genomic testing that a sample of the tumour is needed. Genetic can be done with blood sample? Are both needed? How can either guide tx? Husband currently on xtandi and ADT but down the line this might be useful so good to be prepared! Has anyone any knowledge of how/where to get this done in the UK? Our MO is dismissive because the NHS do not provide this testing , or any tx that might follow from it, outside trials. But but we might be able to self fund if it comes to that, and it might be approved at some point. Not sure though exactly what to ask for or who to approach. Anyone from the UK with experience of this? Would the hospital still have the original biopsy sample from diagnosis 4 years back and would that be of any use? Thanks
Genomic and genetic testing - Advanced Prostate...
Genomic and genetic testing
It costs about $4000 for Foundation One genomic testing. It is done on biopsied tissue. There is a blood test called Guardant 360 that is more expensive, but there are concerns about its reliability. You can do a germline test cheaply, but it is only germline.
There are few uses for genomics in prostate cancer so far. The uses that are known are for mutations that occur in less than about 10% of metastatic patients. BRCA mutations can be treated with PARP inhibitors, Keytruda can be used for MSI-Hi/dMMR (and possibly if PD-L1 or high mutational burden is found, but this is not approved.) That is it so far. There is no such thing as "being prepared." Things will be different later.
You can't use the original biopsy tissue - the genomics change when metastases occur.
Pathological review of his metastases is probably more useful than genomics.
Thank you. I thought that original tissue would not be useful. I guess we wait until its needed but still would like to know from UK people if such testing is available here. Can you explain what you mean by ',pathological review' in your reply? X
Yes- histological and IHC analysis - what kind of prostate cancer you have.
Do you have references/links for Guardant360: “but there are concerns about its reliability “?
Of course- do you think I just made it up?
"Overall, expert consensus was that cfDNA genomic analyses should not yet be utilized in clinical practice based on currently available data"
sciencedirect.com/science/a...
"Despite the limited sample size, our data show very low congruence for same patient-paired samples in 2 CLIA-certified commercially available tests with self-reported high accuracy, specificity, and sensitivity to specifically detect and quantify tumor-specific alterations...Insufficient genetic profiling congruence could jeopardize the clinical benefit of personalized medicine."
jamanetwork.com/journals/ja...
Thanks , much appreciated
He could get germline testing for inherted mutations since those don't change and the cost for this is low.
As long as his current treatments are working, I would wait to get molecular testing done on the metastases since somatic mutations change over time. In general, testing should inform treatment decisions.
Many thanks
I'm in California.
IF you have family bloodline cancer history, (Parents, Grandparents, etc) then generally you qualify for Genetic Counseling. (My grandfather died of prostate cancer at 80. But he passed a mutated BRCA2 gene to my mother who died at 53 of breast cancer and she passed the mutated gene to me which meant I had a much higher risk for certain cancers. I've had 4 different kinds and now 77yr. My daughter did not inherit the gene from me so she is relatively safer. )
The counselor defines whether you qualify for and order Genetic Testing looking for mutant genes. Simple blood test. For example BRCA 1 or 2 mutation in a small percentage of men with prostate cancer allows other treatment approval.
I'm about two years since stage4 Dx, PSA 1300+ and BRCA2 positive. Still on Leopron ADT, and just starting Xtandi. When that is no longer successful I qualify for PARP inhibitor therapy as my next step due only to my BRCA2 mutation.
If you qualify the sooner you know the more informed your testing and treatment options become. I would have been more aggressive back when my PSA was inching up over the years and possibly found remission or cure. Instead mine just exploded and metastized throughout my body and there is no cure possible. I've been able to slow it down temporarily.
If you have a famial history get tested NOW, inform your judgements.
2Dee
My husband's oncologist MO told us it's best to get the "latest" biopsy, using a metastasis site rather than the prostate, as the cancer mutates (changes) as it goes. For this reason, we waited until both docetaxel and then enzalutamide failed (he is still on Lupron), with scans showing progression in his bones. Sadly, this happened pretty soon. The person who took the biopsy looked for what appeared to be new tumor growth, again to try to catch the "latest" mutation.
This was done on May 5th; we're awaiting the results.
For the record, he was diagnosed in August with extensive bone mets, Gleason 9.
Fingers crossed for you. Thanks for your reply.
Best of wishes to you both.
Did you get the results? Best to all of you!
Hi Proflac
I'm from the UK and I have been enquiring about genetic testing. I found a private clinic in Cambridge that carries out this test for about £3000. I was advised by my consultant not to do the test now as they will arrange it when necessary. I was DX with APC in Feb 2020.
Helpful, Thanks. Did your consultant say they would do this on the nhs in due course? Where are you having treatment? You are new into this I see. Wr are neatly 4 years on.Hope there are treatments still effective for you. Regards
I'm being treated at the Royal Marsden in Sutton. I'm on ADT and Abiraterone. Will need to check about the testing. As they said they would arrange it, I assumed it would be on the NHS
Thanks. You are lucky to be at one of the best specialist centres with great expertise and pioneering working this field. They will no doubt do this for you once its indicated. Did you have docetaxel before abi? Good luck.
Thanks Proflac.
I didn't have docetaxel as didn't want to risk COVID-19. I paid for Abiraterone myself in April, but as it (and Enzulamide) have now just been approved by NICE, I will be able to get it on the NHS. Probably a good decision with hindsight. Where is your husband being treated?
Hi. In Nottingham. We were about to go for self funded abi when we were offered enzalutamide in the NICE lockdown compromise! Husband is mega tired after just one week. Hope you are doing well. Keep in touch re the genetic stuff
Bw.
Most men here don't get genomic testing to see if a man is Brca1or2 positive. They just have the normal procession of ADT, then add on drugs like Zytiga, Xtandi, to make ADT last a bit longer, then chemo, and then slow death as all these things fail one after the other and Psa cannot be kept low.
But some men get a poor response with ADT and add on drugs, so they get Pca analysed for what might work and if they are Brc1+2 positive, they might have Olaparib PARP inhibitor which may / may not work to give them more time alive. men who manage to get Lu177 theranostic therapy may get more life after chemo fails, but some don't, so they can get DNA tests and additional treatment which may / may not work.
Our Australian Medicare pays for all the normal ADT and add on drugs and chemo, but all the rest must be funded by insurance if a man has been paying premiums for many years, or its funded straight out of your own pocket, or by reverse mortgage on the house, or by you selling your assets worth enough to cover medical costs.
I've lasted over 10 years since diagnosis, with 6 years on ADT, then add on drugs giving + 14 months,and chemo failed, and Lu177 gave a year so far, but I will need more soon.
Medicare has funded costs of about usd $100,000, and I have paid about usd $35,000 for extra IMRT and this includes many PsMa scans and doctors' fees et all.
Tall Allen explains what is available better than I can. Its all expensive to anyone who is poor. I wish you best of luck, because treatment of Pca is often not very successful if a man does not have a successful RP where all Pca is ALL successfully removed from his body after diagnosis.
If my next PsMa scan with my rising Psa does not show I'd get a benefit from more Lu177, I will seek to be analysed and treated with whatever is considered best by best docs I can find, and it all may cost me usd $20,000 here in Australia. I was told it was available, but I have no details of where yet.
Patrick Turner.
What did your scan show?
I have not had the scans I need yet. I have PsMa Ga68 scan next Wednesday and I talk to oncologist on 18th this month, 8 days after scan, and then I work with him and maybe docs at Theranostics Australia to to have more Lu177, or whatever else might work, and I ain't no expert, my cancer is over 10 years old, and I have no idea what mutated form of original Pca is at work to increase Psa. My future could be longer or shorter than I could ever guess it to be. I've lived with Pca for about 14 years because it started maybe 4 years before I was diagnosed. I had a low Psa of 6, but a lot of Pca, Gleason 9, so I was diagnosed too late to get effective surgery. So trying to stay alive has cost our Australian Medicare and myself maybe $150,000 in value of medical care.
If I had RP when Psa was 3, in 2005. at about 4 years before diagnosis in 2009, I might have avoided spread, had temporary incontinence and ED, and a better life. Cost of medical intervention would have been less than $10,000.
But because my Pca probably spread before diagnosis, a pile of added expense happened. Despite that, I am continent, and ED does not matter, and I have had a good QOL.
I see your picture, and you are young, so all this cancer stuff must be a bit of a challenge to understand, but its very good that you are focusing on what many good men have to face as they get older. The risk of getting cancer is not getting much less; and it affects 50% of ageing population. I have seen how loved members of a family are just not there any more. But the more you know, the less you will be disturbed by what is the action of Nature; its neither good or bad, its just down to what DNA a person got at conception, usually in a loving embrace of two young ppl whose least concern was what would happen 35 years later. If we all worried about what happens 35 years later, hardly anyone would experience love, and the birthrate would collapse.
I had a nice 66km cycle ride today, and it was cold, not above 9C, but I was alive, not dead, so fairly happy.
Patrick Turner.
Thank you!
Genetic testing 
Genetic testing 
Biopsy and Genetic Testing Experiences
Genetic testing-how useful is it?
Is there any difference between genomic testing from prostate tissue vs. blood sample?
