HRD testing m: Hi everyone. I remember when I... - My Ovacome

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HRD testing m

win_56 profile image
13 Replies

Hi everyone. I remember when I was first diagnosed with stage 3c OC high grade serous just over 3 years ago I was tested for the braca genes and was negative but I hear members on this site talk about having had their tumour marker HRD? tested. I think I've got this right....is this something that your oncologists would ask for. Is it available in the U.K.? Thanks

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win_56 profile image
win_56
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13 Replies
27-359 profile image
27-359

I did ask the oncologist about this and he said that they didn't do it. I don't know if it's available privately or if there are any bits of my tumour hanging about somewhere. Surely they don't keep tumour parts indefinitely?

Jenny

win_56 profile image
win_56 in reply to 27-359

Not sure how long they keep them. My onc to ld me 3 years ago they keep a sample, but as you say not sure how long for. There must be somewhere in UK that does it but will prob cost a fortune I bet.

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Hi there win_56

Thank you for your question. I can see you’ve already had a response to your query, and hopefully some more members of the forum community may be able to share their experiences with you soon.

BRCA1 and BRCA2 gene changes are both types of HRD (homologous recombination deficiency) but some people who are BRCA negative, are positive for other types of HRD. HRD describes a process when the body is unable to repair damaged pathways and cells are unable to fix broken DNA, meaning cancer cells also have a harder time repairing themselves. Presently, HRD status mainly has relevance when considering eligibility for PARP inhibitors. HRD testing is a fairly recent development for those who are newly diagnosed. Access to retrospective testing can be challenging as the test requires a large tissue sample which may not be easily available, so this may be a topic to discuss with your clinical team.

Here is a link to a blog post which includes more information about HRD, which I hope will be helpful for you: ovacome.org.uk/Blog/olapari...

Please don’t hesitate to get in touch if you have any further questions or would like to talk things through. You can contact us on this forum, by calling our support line on 0800 008 7054/07503 682 311 or by emailing support@ovacome.org.uk.

Best wishes

Annie

Ovacome support

Lyndy profile image
Lyndy

I am glad you asked win_56… I have learned something new! x

MPee123 profile image
MPee123

HRD is now available in the UK, the drug companies are funding it. It has only become available a few days ago, so keep asking your oncologists because it will filter through to them soon if it hasn’t already x

win_56 profile image
win_56 in reply to MPee123

That's great thanks for the information. This will be useful to us all ☺️

Laz66 profile image
Laz66

I had this tested in March this year, following my first recurrence. They did this from the original tumour that was removed in 2019 and still in storage! I think onc said it went to USA for analysis. X

Cascabel profile image
Cascabel in reply to Laz66

I live in Spain and after my surgery - 3c Oc, and during chemo , my oncologist offered me a genetic test of the tumour in a Genetic Company in Salt Lake City, USA called Mychoice. I had to pay the test because is not covered here. The results was the tumour had a lot ot HRD and they always said that the Best treatment for me is Niraparib. I am on Niraparib since May 2020 and its working for me very well.

Slipper1 profile image
Slipper1

Hi, i was the same as you, BRCA -ve, but it was only seeing the new release of the NICE guidance and olaparib where it mentioned about being HRD to be eligible for this PARP, so i asked my oncologist to be tested. The testing is in America but he said yes, understand i was the first to be tested in our area and i am HRD positive. I would ask

testarossa71 profile image
testarossa71

Hi,

I was diagnosed in November last year, with debulking surgery in December. I pushed and pushed to get BRCA testing, but for some reason my onco seemed reluctant. Thankfully, by the time chemo had finished (end of April), they had tested me and confirmed that I was BRCA Neg. However, in a surprise move, he then told me that a sample of my tumour was being sent for testing in the US for HRD. This was touted to me as being a newly-available test that helped clinicians to determine what therapies would be most effective for each individual patient. I had been expecting to receive Niraparib, but when I received an HRD Pos result, I was prescribed a combined maintenance treatment of daily Olaparib (600mg), and Avastin (Bevacizumab) on a 3 weekly basis.

I hope this helps in some way. Sending you best wishes.

Annie x

win_56 profile image
win_56 in reply to testarossa71

Thanks good news as this parb could be all the difference in your outcome to recurtences etc. X

Mirrorplace profile image
Mirrorplace

Thank you for sharing your thoughts on this. It seems like there are some new findings that could really help many cancer patients. Interesting to hear about this HRD gene. My mum had stomach cancer, and sadly passed away in 2004. Only 2 yrs prior her sister died of the same, her brother was treated for prostrate cancer and another sister's daughter, (my cousin) died of ovarian cancer aged 18 in 1985. My mums Dad and his cousin also had stomach cancer and passed away in their fifties. Sorry if I'm over-sharing. The thing is before my mum died she was approached by a genetics consultant who was concentrating on a possible link to lynch syndrome. They tested her tumour (in fact years after she died) and said it wasn't that. I don't know whether they checked for the Brca gene. I now wonder about this HRD gene. I'm yet to be tested re the Brca gene. It was explained to me that the chemo they will be giving me will be more effective if I have it. Its like I'm thinking it's better if I do.. but not really?? Sue. X

organicinna profile image
organicinna

I think i had that test HRD here in UK at RM....is that one when they checking tumor for that? not blood? I had it before BRACA and it was negative too.....

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