I live in Scotland so we aren’t covered by NICE although apparently SMC usually adopt but many months later (too late for me). I am HGSOC , 4chemos and a debulk in. I have 2 chemos to go. I am BRCA neg. Given the recent research outcome I’d like to get an HRD test done pronto so if I am HRD + I would have the option to pay for the oliparab/Avastin maintenance. The online literature says the HRD test results take under a month but it sounds like they are are taking much longer… has anyone had a the test recently and can they comment??? (Inundated with tests from England NHS maybe?) Also is there anyone on here who lives and is being treated in Scotland that has managed to get a HRD test done? I’m being treated in Edinburgh and this is a first for them it seems 🙄.
Many many thanks for your help. Charlotte
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I'm sorry you've not had a reply to your post yet. Hopefully a member from Scotland will be able to share their experiences.
I just wanted to let you know about this information on the AstraZeneca website which explains that the test results take 14-21 days and that "discussions for access to HRD testing in Scotland are ongoing." The full information is here: medicines.astrazeneca.co.uk...
However you may want to talk to your team who could have more up to date information.
I hope this is helpful. Please do get in contact with us through the forum or email support@ovacome.org.uk or call 0800 008 7054 if we can help with any queries.
Thanks for your reply Anna. I’ve seen the AstraZeneca website. Unfortunately my team in Edinburgh are not any more informed so I’m having to suggest solutions myself.
Hello CharlotteI live in the Highlands, and when conventional treatment was exhausted in December, asked to be referred for clinical trials. I attend the Western General in Edinburgh and my experience with the trial team has been wonderful, they are so incredibly caring and always go the extra mile to help. I have clear cell cancer, so different to yours, but had genetic screening to see if the tumours I have, have the faulty gene often found in clear cell, and now on a targeted drug. Not sure what trials available for HGSOC, but on my trial all costs for screening and the drugs are covered. Maybe trials not something you want to consider, but thought I would mention as you are in Edinburgh, and know my oncologist never brought up possibility of trials, it was through my own research I found out about them. All the very best, Sheila
Thanks v much for your reply Sheila, there aren’t any trials open for my type and stage of cancer at the moment (apparently). I’m hoping Gorlay (who I’m not under but works with my onc) might be able to help but if not I’ll find a way to get the test somehow!
Hope something opens up soon for you Charlotte. I am under Prof G, and though only met him via video link, have spoken to him on phone a few times and he and his team really have been amazing. All the very best xx
I am in England so cannot help with the Scottish situation but wondered if the BRCA tests were faster. If you are BRCA negative you might consider Nariparib. Thinking of you with love and hoping you have success soon x
Thank you for your post - it triggered me reading about HRD & the new drug protocol. I searched "Testarossa71" to no avail - what was the name of her post so I can try again please?
Do you know of anyone who has experience of this either directly after 1st chemo or later but before 2nd chemo, for recurrence, in England as I am, as well as options in the rest of the UK? Please post any further information you manage to find.
I think I am HRD as genetic testing in 2019 mentioned ATR, which is one of the genes involved in HRD. I would like to know if a rise in CA125 indicating recurrence would give this as a route to consider as "maintenance", earlier than chemo. Also if I would be eligible in any event, as my 6 rounds of chemo did not include Avastin. It would be so reassuring & prevention is better than cure (bad word as there isn't one, but the results of 5 years on olaparib are positive!).
In short can anyone who is a ‘watch & wait”, be tested for HRD & if positive, start olaparib & avastin as maintenance?
Olaparib being limited to 2 years has been mentioned by some - others have been on it for 5 years. Are there time limits in the new protocol?
Sorry to ask so many questions in your post - but maybe having all the "HRD" info. in the same place is useful and maybe other Teal members can ask their oncologists too to get a wider view & my clinic is not for ages yet. Or maybe Ovacome Support can help too?
Good Luck in your pursuit in Scotland where you say the protocol is not yet approved - though whether or to what extent it's happening in England yet, is unclear to me, in any event.
I'm sorry you've not had any replies yet. Hopefully some of our forum members may be able to share their experiences in relation to your post soon.
If you would like to discuss any of this with a member of our support team, we would be happy to talk through your queries on 0800 008 7054 or 07503 682 311. We can also connect by scheduling an individual video call if you feel this may be helpful for you.
Thanks for your reply. The link in Anna’s msg above is good info. It would be great if the Ovacome team could also post the NICE report relating to this. I googled and found it but don’t think I can attach. These changes seem quite a big deal and your idea of having the info in one place is really good - it would be great if Ovacome could help with that. Because I’m so focused on my own care I don’t know about application for women in different circumstances than my own. Of course if I dig up something interesting I’ll share!
I copied and pasted the testarossa msg below because I could work out how to send you the link! (Hope that’s ok with moderator)
“I’m one of those who is on both Bevacizumab (Avastin) and a PARP inhibitor (Olaparib).
PARP inhibitors stop the cancer cells repairing themselves at DNA level, while Avastin helps to stop new blood supplies forming to cancerous cells, and kills/damages existing blood supplies to those growths.
Just recently a new PARP inhibitor (Niraparib) has become available to women who do not have the BRCA genetic mutations. Previously there was nothing (that I know of, at least). However, NICE has also just extended the license for Olaparib for use by non-BRCA+ women, if they are tested and found to be HRD (Homologous Recombination Deficiency) positive. This test has only become available in the last couple of months - samples have to be sent to the US. I've been tested and found to be BRCA- but HRD+, so qualify for both the Olaparib, and the Avastin.
I had Avastin with chemo (rounds 4-6) and three weekly as an infusion ever since. I'll have around 12 months of Avastin in all, while the Olaparib will continue until I have a recurrence.
I hope this helps, but if you still have questions, please do ask your consultant or CNS - that's what they're there for.”
Just wanted to pop by and say thank you for Charlotte’s suggestion to add the NICE overview on olapraib and bevacizumab. It’s available here and I hope this will be helpful in answering questions: nice.org.uk/guidance/ta693
If you would like to discuss any of this information, please don’t hesitate to get in touch with us via our support line on 0800 008 7054 or 07503 682 311.
Charlotte, thanks for your reply & also to Annie for signposting to further sources of information.I now feel more familiar with the structure of the websites: eg I found "Testarossa71"s reply post as a forum member on HealthUnlocked website, and the list of 82 'blogs' by topic on the Ovacome website - each site with their own discrete search facility.
Sorry if this should have been obvious to me, & I am just slow!
I have continued reading and unless I misunderstood the Ovacome website both Niraparib & Rucarparib, 2 other PARP inhibitors, are available in Scotland without being tested for HRD. Though of course PARPS more likely to work better if HRD.
Comparisons seem to state Niraparib has longer PFS than Olaparib but more side effects. I was more familiar with Olaparib (maybe its been in use longer?), so the new NICE protocol seemed attractive, but now I am questioning this and also wondered the reasons for your approach.
Take care - I hope your onc gives answers and you are happy with your treatment plan.
Hi Terra1, I think the Oliparib & Avastin combo has been shown to improve the time to reoccurrence. Of course I probably won’t be HRD+ In which case I’d try to get niraparib. I’m keen to have as many options as possible incase I’m intolerant to one particular drug. It sounds like you are finding all the info I hope it helps you find and feel confident in a treatment path. I saw reference to this org on here.. I’m not sure how expensive it is but I think I’ll check it out. Could be a good compliment.
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Hi everyone,
A few questions
Getting a port flush at a different hospital?
so many questions 
Waiting and more waiting. 
