Does anyone have experience of a liquid biopsy either via the NHS or privately?
We got a second opinion, discussed the case with a professor who recommended a guardant 360 liquid biopsy due to the unusual spread into the other lung & appearance during biopsy which is apparently usually seen in oncogenic cancers . I asked the cancer specialist nurse to ask my grandads local oncologist but she said he is on call so unlikely to reply so she would answer. She declined stating they do not do liquid biopsies & it will not have changed as he had a tissue biopsy last May / June. The professor said he would need a referral completing by them (local team) to order the test .
Depending on the cost we could pay for this privately however I’ve struggled to find how to source one. So I was wondering if anyone knows if they are available on the nhs or how to get one private ?
thanks x
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I believe The Royal Marsden Hospital now has the facility to do this testing, where as at one point samples were being sent abroad. I do not know how to access it privately. On other Facebook groups I have seen it discussed and I think the cost was around £3000. Sorry I do not have more knowledge, but Royal Marsden would be a good lace to start. It will be interesting to see if other people have more knowledge, as I may need one myself in the future. Does the professor you consulted not have advice on where to get it? Good luck x
Royal Marsden and Addenbrookes definitely do them but you may struggle to get them to see you. It’s worth a go though. Google the hospital and liquid lung biopsy. Hope all will go your way x
The liquid biopsy is looking for fragments of DNA from the cancer that are circulating in the blood stream, this link provides some information on liquid biopsies: roycastle.org/what-is-a-liq...
The Royal Marsden are doing a trial on this: this is taken directly from their website: "Initially, the Marsden360 is available for private and clinical trial patients being treated at The Royal Marsden, as well for an NHS England national study for patients with suspected late stage lung cancer. The Royal Marsden genomic laboratory are not able to discuss access and eligibility for the test with patients individually. Patients should discuss this with their local clinical team for further information and advice."
If you would like to discuss anything you can contact us on our ask the nurse helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org
I came on the site today as my dear brave father, our hero passed away on Monday 29th, he fought so bravely since his diagnosis last year but the cancer was just too much for him. I feel lost and scared despite a loving husband and close family.
I read your post, you might be able to read my previous posts; dad had 2 liquid biopsies , the first on NHS trial In Gloucestershire, which we weren’t initially told about as dad didn’t meet ‘one’ of the criteria, we assumed due to his age-89 but when we told cancer nurse we were arranging privately ( had made enquiries with Royal Marsden) the Oncologist agreed to ‘let ‘ dad have it on the NHS! Luckily it showed the EGFR mutation and targeted therapy was started. A subsequent scan showed a partial reduction in the tumour ( was over 8cm at diagnosis).
Unfortunately
, dad built up resistance to the Erlotinib drug and treatment was stopped when tumour size increased. We then paid £1,250 to have another liquid biopsy from Cancer Screening Trust, who came to the house as travel would have been too tiring for dad, his fatigue was very bad. The results however didn’t open any doors for further treatment and dad by that time had enough of side effects and he said “enough is enough” but we were glad that we did it, dad and the family wanted to explore every avenue.
Ironically, at the same time, the Oncologist decided to go ahead with a standard tissue biopsy when at the outset, said dad wouldn’t be able to tolerate it, he tolerated it without any issues. I know some people have had good experiences with their Oncologist’s but ours most always started consultations with “ I’m limited on time “, yes the NHS is stretched and not sure if the outcome would have been different, possibly not but we wish we would have gone private from day1.
I wish you all the very best for your granddad and hope that a liquid biopsy gives him more options for a successful treatment, stay strong.
So very sorry to hear of the loss of your dad and the difficult road you had with his cancer. Grief can be quite isolating despite the loving support you have around you.
If you feel at any point that you want to talk to someone, the Loss Foundation specialise in providing free support for those who have lost loved ones to cancer: thelossfoundation.org/
You are welcome to contact us if you would like to chat on our ask the nurse helpline 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org
Thank you and for your nurses who took time to talk to me during dad’s treatment. I am looking at the loss foundation and will contact them when I’m able to. Keep up all your good work and I pray for a time when this cruel cancer can be eradicated.
I'm really sorry to read about your Father today. I know you left no stone unturned to support him and I hope that brings you some comfort in the weeks ahead.
Thank you for offering such informative advice at such a difficult time ♥️. I’ve emailed the nurse tonight so fingers crossed they will organise it via the nhs though I’m not hopeful.
Yes our experience hasn’t been great either with the consultant or nurses tbh.
I hope you feel proud of yourself for helping others x
I hope you have success getting this organised...the Roy Castle & Adaughter responses look really helpful for your specific questions.
I think its really unfortunate that your cancer nurse said "it will not have changed as he had a tissue biopsy last May / June" - as you're obviously aware, this is ill-informed - tissue biopsies and blood biopsies identify different things, and blood biopsies are really important to identify which cancers will respond to the many targeted therapies available now (and equally important, which won't).
Guardant360 is based in the US. Royal Marsden has licensed Guardant's technology for their clinical trial (that's why its called Marsden360), with the hope that in time we'll be able to get the test performed in the UK, and so shorten the time it takes to get results.
My husband was diagnosed 3 years ago and had a blood biopsy at that time alongside a tissue sample. This was before Royal Marsden's trial, so his blood was sent over to the US. It looked for any of the genetic mutations for which there are targeted therapies (like EGFR, ROS, ALK). He didn't have any. In contrast, his tissue biopsy showed he had a high PDL1 score so he was deemed suitable for immunotherapy.
In terms of getting this test privately without insurance, you could try the Sarah Cannon Research Institute, which is the Cancer Institute of HCA Healthcare in the UK, sarahcannon.com/service/per....
They are based in London and have a partnership with University College London. I've just seen that Roy Castle have suggested HCA could be an option for a private test as well. We got an opinion from an oncologist working at Sarah Cannon 3 years ago.
The Guardant360 website is really informative about the liquid biopsy they have developed (guardantcomplete.com/produc... and I seem to remember they have a sample report online.
Best of luck finding a way through this for your Grandad.
Wow thank you all for sharing all your knowledge it helps a lot. Yes, they are always the same they refuse the majority of things we ask for. I’ve emailed about the liquid biopsy again so fingers crossed we get a more helpful response this time.
Unfortunately grandad PDL1 is very low so the immunotherapy he was on they pulled and said he had to go onto palliative care. Hence why they are now declining any options as they are saying he doesn’t meet the criteria for anything as he isn’t being treated. The system is so frustrating. Xx
This sounds so awful for you all and understandably very frustrating. Have you thought of contacting the Patient Advice and Liaison Services NHS England, they offer confidential advice, support and information on health related matters: nhs.uk/nhs-services/hospita...
They are based in most hospitals in England and you could request a face to face appointment with them to discuss your frustration.
You may have tried this already but you could contact the oncologist secretary via the switchboard to explain the situation or perhaps the GP could request a more urgent appointment, I can appreciate this is difficult if they have no appointments available but you could say that you would take a cancellation at short notice.
It is very challenging having to wait when you have done everything that you can to help your Grandad, and assume you have kept the Professor informed of the situation.
Hopefully you will hear soon from someone , have some answers and work towards a good outcome.
We are here to support you in any way that we can and you are welcome to use our ask the nurse services, 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org
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