Onco focus test: Hi all, I’m just wondering if... - My Ovacome

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Onco focus test

Dollie22 profile image
16 Replies

Hi all, I’m just wondering if anyone had this test which reportedly matches your tumor to a database of approved treatments?

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Dollie22 profile image
Dollie22
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16 Replies
Kryssy profile image
Kryssy

I asked my oncologist if this is possible some time ago. He said that it was his dream so I guess the answer was no, not yet. As far as I know these are private companies making big money with these claims but if I'm wrong then I'll apologise. X

Chick44nzrn profile image
Chick44nzrn

Dear Dollie . Yes I’m currently waiting for the results of this oncologist test before starting on chemo , although there’s a small chance I may just have oestrogen reducing meds for five years . It’s done apparently in Munich I’m told .. currently I’m struggling a bit with the seroma big collection of fluid under my arm . Had one lot aspirated but my surgeon advises another so soon increases infection risk . I hate it though as it’s so squishy and sticks out under my bra! ( 4 weeks post op). How are you getting on ? Hope you have a very relaxing Sunday . Xx Denise

IrishMollyO profile image
IrishMollyO

Hi Dollie

I had an Oncotype test done in Dec after my mastectomy for Lobular Breast Cancer. I wasn’t familiar with it until my surgeon told me about it . She had my tissue sent to the USA where it was given a score . Mine was under 18 and so I was able to skip chemo and go straight to Radiotherapy. I’m not aware that it is done for all cancers and as my original PPC was inoperable the question wouldn’t have arisen . It’s an added bonus for me now as I face more chemo for recurrence. I see now that yours is called Onco Focus test and it’s certainly one I haven’t heard about. Perhaps it’s the same as the Oncotype test ? Kryssy seems to be sceptical about it and she is pretty well up on all things OC.

I hope you get more replies to your interesting question. Take care.

XXX

💚💕

January-2016-UK profile image
January-2016-UK

There is a website for the Onco focus test. I think a year or so ago someone posted that it cost about £1500. I had a quick look at the sample report for ovarian cancer, dated 2016. The report draws attention to BRCA 1 gene which you should be able to get tested on the NHS anyway and identified one treatment, five trials on,y one of which was in the U.K. The report identified two other gene alterations defects, one the TP53 mutation and goes on to list nine clinical trials of which only two are in the UK, one only in some other European countries, 7 only in the US. The report also identified an MYC aberration, with one suggested trial, again only in the States.

It happens on some trials that your tumour is tested anyway to try and discover why the trial drug works for some and not others, so maybe a trial might be the way to go.

I'd be somewhat disappointed if I'd shelled out for this report but perhaps the sample isn't a true indication of what they can do for ovarian cancer. I've read that the NHS does pay for a different test with this company for breast cancer. Suggest you check with your oncologist if they'd consider it money well spent.

coksd profile image
coksd

I am in the process of possibly having it privately if the public hospital have sufficient biopsy left from plural effusion I had drained on diagnoses otherwise I need a new biopsy first, it costs €1800 in Ireland

in reply to coksd

Just to let you know VHI will cover this if you attend a certain geneticist in Mater Private or he might come to some arrangement with you himself

coksd profile image
coksd in reply to

Thank you I went to Dr Fennelly in St Vincent's private I must ask him if they would cover it. Or could he ref me to the Mater Private for the test.

Dollie22 profile image
Dollie22 in reply to

Good yo know that VHI are covering it now. It sounds promising .

RonLitBer profile image
RonLitBer

The location in Canada is subcontracted to a doctor/entrepreneur (emphasis on entrepreneur) who I believe is trying to charge $5,800 US for this. His office used to be up a staircase above a store down the street from me. He now moved to a slightly more professional building across the street from his previous office. Basically a family doctor who missed his calling as a businessman. A bit of a racket in my opinion. He is basically the middle man and sends everything to the States getting a cut for himself no doubt for his efforts.

Looking at the sample I would echo January-2016-UK since BRCA testing is done at my hospital for free and if positive is provided to family members also without cost. The sample shows 221 genes being tested whereas my hospital did something like 550. Maybe the sample they show you is pretty inferior but maybe that says something too. Typically you would do better on PARP inhibitors and even chemo if germline BRCA positive or if your tumour had a BRCA somatic mutation.

The sample shows TP53 gene mutations which are present in almost 100% of high grade serous ovarian cancers so no surprise there.

The sample also says that they are unable to distinguish the difference between a germline and somatic mutation for TP53 which does not make sense to me if they are doing a test on a tumour sample. The sample also says that the TP53 may be a germline mutation. A germline hereditary mutation in TP53 would mean you have Li-Fraumeni syndrome while a somatic mutation in TP53 is very different and would only be in the tumour suppressing the ability of p53 protein to do its tumour suppressor job. This would make me a bit concerned and raise a red flag about this firm. Your tumour could also be BRCA-like which is distinct from a germline BRCA mutation. Hugely significant difference. I think I posted a chart a while ago showing some specific p53 mutations which indicate if you are getting some effects of p53. Also depending what type of mutation you have in p53 you would not necessarily qualify for all of the p53 clinical trials that are taking place as some are for certain types of mutations in p53.

As far as the clinical trials are concerned I would be cautious around where they are located (as mentioned by January-2016-UK). Maybe the trials may not yet be recruiting or active and not recruiting. All this said I do think it is worthwhile to get your tumour tested just not by this company perhaps. There are others and again I think I posted about one a while ago in Europe but it was not this one so maybe you need to do some comparing and shopping around. Some more research.

There are firms in the States that do the testing as well, Clearity Foundation, Foundation One and Claris.

carislifesciences.com/

foundationmedicine.com/geno...

clearityfoundation.org/

I believe Clearity goes though either one or both of the above but they will let you know and are very good at providing information.

There is also another method of testing tumours to see what drugs they may respond to. It is done in California by 2 clinics that I am aware of who put a piece of your tumour in a dish and subject it to different drugs to see which drugs are effective in real time. This is one of them:

nagourneycancerinstitute.co...

This is the other one:

weisenthalcancer.com/Patien...

They used to be partners but split up. There may be a time frame in which you have to ship material to them and you will probably need to have a biopsy as they need fresh tumour material. They may take ascedis for the tests. The problem here is that just because a tumour responds to a drug in a dish does not mean it will do so in your body. Also the number of drugs they test is directly related to how much of a sample you provide. I have heard of others having very good results with this though. There is tons of stuff on these clinics on Inspire.

Again, and finally as also mentioned, many clinical trials will test you prior to getting on the trial as that is the whole point of some of them. There is no charge for that.

Just to reiterate I think tumour testing is a good thing to do. Where you go and how it is tested is the issue.

Ok, that is enough. I have blathered on too long already.

BeeWild profile image
BeeWild in reply to RonLitBer

Thank you as always very thorough response from you and much appreciated xx

RonLitBer profile image
RonLitBer in reply to BeeWild

Thank you. Hope your trip is going well.

BeeWild profile image
BeeWild in reply to RonLitBer

Back home now had a lovely time with my bestie but I think I was a bit ambitious trying to do Versaille 2.5 weeks after finishing my 18 taxol! I did a lot of sitting down and felt 90 at times but I still enjoyed myself and will need to go back to see the gardens fully he he 😁

Now just 4.5 days to stay well with no bowel symptoms and I should get my olaparib (fingers, eyed and toes crossed) xx

Blossomstix profile image
Blossomstix in reply to RonLitBer

Dear RonLitBer

I know I am a bit late on this one but in case someone else searches on it. I had both Caris and FoundationOne on two separate tumours. The Caris one was not great (considered first generation molecular profile testing) and on speaking to international oncologist (who was streaks ahead of my two UK based ones I am sorry to say) they recommended FoundationOne. However, I received it and most of the report was 20 pages of useless references with very little in the way of treatment. They didn't even test for PD-L! expression for immunotherapy which is now my option for metastasised oesophageal cancer. I cannot comment on Oncologica or others however the former does apparently cross reference trials for you that have been tested on humans. Also neither Caris nor Foundation One took the trouble to explain the report which apparently Oncologica do.

Hope this helps someone else.

Rlenesue profile image
Rlenesue

No, I haven't but it sounds awesome. Proper treatment for you.

Dollie22 profile image
Dollie22 in reply to Rlenesue

Thanks Rlenesue, I’m going to look into it anyway as it might inform future treatments. I hope you’re well? D

Bliney profile image
Bliney

I had a molecular profile done by Foundation One which can sometimes be useful and worth asking your oncologist about.

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