Second opinion advice : Has anyone used... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Second opinion advice

alice111 profile image

Has anyone used the services of Harley Street Concierge for a 2nd opinion? My husband is not being offered any treatment although he is fit and well at the moment ..and Macmillan said that they heard good things about them I was also thinking of having a precision oncology test performed which is able to identify the most effective treatment ( Oncofocus) ..I just wondered if anyone had private testing in our situation when the NHS is offering nothing. We have seen the Oncologist once since he was diagnosed , we go back tomorrow and that will be a 15 weeks with no treatment or appointments much for NICE Guidelines on cancer .. We also want to move to a specialist NHS Cancer Centre as we have no confidence in the Oncologist or the chaotic way the clinic is run. Appointments cancelled 4 times, once when we were sitting in the waiting room , biopsies that took 4 weeks to arrange's just been one disaster after another. Most of all the Oncologist doesn't care less ...the EFRG test failed twice and he didn't want to do it again as it would be a waste of time ..he only agreed because I insisted . They have had 2 differing results for the PDL1 test one which was high and the other low! They are going with the low result unfortunately , excluding my husband from immunotherapy. Thanks for any help, advice , anything.

8 Replies

Hi there

What a horrible situation to be in and sounds like you've really had a hard time. I'm sorry I don't have any advice as far as Harley street but i think a second opinion is a very good idea.

Wishing you the best of luck and don't give up.


Hello alice111

I wish I could be of some help in some way. Im sure there will be someone on here able to give you some advice. It must be very frustrating all this for you both.

I hope you get through this tangled web as soon as possible.

Wishing you the best

Hoggy x

Hi alice111, can you not ask your GP to refer you elsewhere at all on the NHS? That's what I did. Had similar experience as you with local hospital and asked for a referral to the Royal Marsden. I know that the Marsden do private care as well as NHS, if you have insurance. Good luck x

alice111 profile image
alice111 in reply to Tapdancer

Hi Tapdancer,

Our Gp is happy to refer us but, to be honest , we can't spend more wasted weeks waiting for an appointment. If we have a private opinion it will hopefully be quick x

Thank you very much for your reply. We would really like to make an appointment..

Where are you based? I'm guessing UK as you mention Harley Street. You can ask for a second opinion and choose to go somewhere else. If you're around London, there's Royal Marsden who have a good reputation for lung cancer services. Sanjay Popat is on the team there and has a good reputation.

NicF4 profile image

Hi Alice, we do not have a direct relationship with Harley street, There are a number of alternatives for a second opinion. Firstly you do not have to pay private costs for a second opinion, everyone is entitled to a second opinion on the NHS. Just visited your GP and they will sort it out for you. You can request for the second opinion to be with a certain clinician or you can leave it to the Gp to find you someone. PALS (patient liason advisory service) all hospitals have a department can also be a good way to discuss getting a second opinion. If you do wish to seek a private second opinion there are a number of private clinics in the London area.

Good afternoon Alice, my Joel was refereed the Sarah cannon unit at Harley Street that normally specialise in trials. However they can provide a blood test which will check to see if hubby has any defected genes and if they can be treated. They are definitely worth looking in to however they are a private unit and you will need a specific referral from the hospital or you can choose to have the test privately which is quite costly but worth it.

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