BRCA Test

[SueH1]

Have any of you come across the suggestion that the genetic test called BRCA is not very accurate and that even though you may have come out negative you may be positive? Secondly what do you guys know about the PARP treatments and availability at the moment?

[HerThing]

Hi Sue, I have not personally heard any suggestion that the BRCA test is innacurate, maybe others can shed more light on that. From my wife's (Angie's) experience though, it was a big surprise to find that she tested negative given the preponderance of cancer in her family. Her tissue samples and bloods were therefore submitted for further genetic research. The thing is while BRCA 1 and 2 are known gene faults there are others; so being BRCA neg does not necessarily mean there is no genetic issue involved. In fact I have recently been reading about Lynch Syndrome which has a hereditary link to some occurences of OC and involves genes other than BRCA. It is also linked to other cancers such as womb cancer and endometrial cancer, but most predominantly with bowl cancer. I am not sure if knowing whether one has Lynch syndrome has any benefits in terms of treatment options for OC (eg Parp inhibitors) but it would certainly be a bonus to know for our children and their screening options. I am not sure the information is of any interest or help in answering your question but here is a link to some info..macmillan.org.uk/Cancerinfo...

Andy x

[sharonforce]

Hi Sue

I am BRCA 1 positive and also haven"t heard any suggestion that the test is inaccurate. There is more information on negative test results here: facingourrisk.org/info_rese...

I am currently on a parp inhibitor trial at the Royal Marsden in Sutton so happy to answer any questions you may have. I am on a trial called Compakt ( public.ukcrn.org.uk/search/...

I was also on a BMN673 parp inhibitor trial in 2012.

Clinical Trials website are showing 8 trials currently recruiting relating to parp inhibitor and ovarian cancer: clinicaltrials.gov/ct2/resu...

Best wishes

Sharon

[Hidden]

Hi Sue - no, I've not heard of false negatives either.

I'm negative and was tested as I'd had triple neg breast cancer as well as OC and they're often linked. Plus quite a lot of my BC in my family.

There's quite a lot of research interest in something my onc calls BRCA ness and I think this is also associated with PARP inhibitors. I think the idea is other genes, as yet unidentified, which behave in similar ways to the BRCA ones....

All the bestxxx

[Whippit]

Hi Sue,

I had a negative result for the BRCA gene.

I'm at the Royal Marsden in Fulham and have been told I'll be on a PARP inhibitor trial with Carbo-Platin and Taxol as chemotherapy when I next need treatment. I'm currently on maintenance Avastin having completed a 2nd line of chemo end Feb (carbo-platin and gemcitibane). My case might be slightly different from others as I received carbo-platin single agent for first line and the Marsden have advised I need to have Taxol next time or I won't qualify for most clinical trials.

I attended an Ask the Expert Day for Ovarian Cancer in Manchester on 5 June. Professor Gordon Jayson from The Christie gave a presentation comparing how PARP inhibitors work compared to Avastin, and Dr Andrew Clamp, Senior Lecturer in Medical Oncology, gave a talk on Current Clinical Trials. In this presentation he estimated PARP inhibitors would be available to all patients who can access the National Cancer Drugs Fund in the next 12 to 18 months. I'm assuming here that something will replace the NCDF whatever the outcome from the next general election.

I hope this is helpful. x Annie

[Hidden]

Hi, I tested postive for a mutation of the BRCA 1 gene called BRIP1/BACH1. I was tested for BRCA 1 and 2 plus 25 other gene mutations known to increase your risk for BC and OC. I also have not heard that there are false +/- in teh testing.

Sherry/USA