Need advice & recommendations please

[alice111]

My husband had surgery for adenocarcinoma 5 1/2 years ago and was considered to be cured of his disease. In June he had what we thought would be his final scan only to be told that he had a leison on his liver and spots on his lungs. We have waited 12 weeks to see an Oncologist as the Clinic kept cancelling appointments , biopsy's were delayed ( not enough qualified staff apparently) , test results not back etc etc ...we even had an appointment cancelled whilst we sat in the clinic. On Tuesday we eventually saw the unpleasant Oncologist ..( not just my opinion ) He stated that he thinks the cancer is "new" so not related to the original tumour. He said the tests showed my husband is not eligible for targeted treatments as he does not have the mutations and that, due to his poor kidney function he can't have chemotherapy either. So, after all these weeks of anguish we have been left with no treatment plan and no idea what the future holds. One test apparently failed so a new liver biopsy has been organised but the oncologist feels this will make no difference. We told him we want a second opinion and have asked our Gp to arrange this, probably at the Royal Marsden. Can anyone recommend a good Oncologist , at the Marsden or anywhere else in the Berkshire/ London area? Finally, has anyone co -paid for a drug that the NHS won't fund? i have read the NHS policy and it seems to be an option..I am think particularly of Keytruda .

Thank you for any advice you can give x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear alice111

So sorry to hear of your Husband's recent findings on his liver and lung, and so disappointing to hear of the painful journey of waiting and cancellations of appointments. This must be very frustrating and adds to the stress of everything.

You are very entitled to a second opinion, or is there a possibility you could see someone privately?

The Keytruda will only be of benefit if the cancer cells show they are PD-L1 positive.

The other thing to perhaps consider is a clinical trial, I have placed two links below on current trials in the UK.

cancerresearchuk.org/about-...

and

ukctg.nihr.ac.uk/

Does you Husband have a lung cancer specialist nurse to whom you could discuss this with?

If you wish to discuss anything you can call our free nurse led helpline number on 0800 358 7200

Kindest regards

The Roy Castle Support Team

[alice111 in reply to RoyCastleHelpline]

Thank you for your reply. We would be happy to pay for a 2nd opinion..The other thing I am looking at is this test : (Oncofocus® cancer test works by firstly sequencing the DNA and RNA of a patient’s tumour which has been extracted from the routine histology sample used for diagnosis.) I wonder if anyone has any experience of this company Oncologica ? Could this help my husband to targeted therapy or at least confirm to our satisfaction that it's not appropriate. We have no faith in our clinic, which is not a specialist Cancer centre, and have managed my husband's case so poorly. We don't seem to have many options so I'm very anxious to be proactive and try not to be totally dependant on the NHS.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to alice111]

Dear alice111

If you are looking for a private Oncologist, The Royal Marsden Hospital private care is one of Europe's largest cancer centres. , I have placed a link here and the telephone number is :020 7811 8111

royalmarsden.nhs.uk/private...

They also have an NHS lung cancer unit at The Royal Marsden Hospital

royalmarsden.nhs.uk/our-con...

Oncofocus charge a fee of £1500, (some private insurance companies may pay for this but assess it on a case by case basis)

Hope you have some more answers soon and having trust in the doctor will make a huge difference in this already difficult road for you both.

All the best

The Roy Castle Support Team

[miasam]

My husbands oncologist is lovely really helpful and careing and she will do everything she can to help her name is sarah lock at the wittington hospital london archway .and our macmilain nurse pat booth is brilliant too my husband is stage 4 lung cancer with now brain mets .i cannot praise them enough hipe you get the help you need

[Tapdancer]

Hi Alice, in a similar situation to you with my mum. We are not at all happy with our local hospital oncologist or Macmillan nurses with lots of messed up and cancelled appointments and generally not good care. I contacted the Marsden in Sutton as we are based in Surrey and they told me to get the GP to refer my mum to them and they would be happy to see her and transfer her care there. The head of the lung unit at the Marsden in Sutton is Dr Mary O'Brien. Good luck!

[JanetteR57 in reply to Tapdancer]

Dr Sanjay Popat is a medical oncologist there who I've met at various conferences/committees. They are a specialist centre so it would be very different from a district general hospital and well renowned for lung cancer care.

[Bow-19]

Another good website for information is the American Inspire website. It is worth joining that too and putting a post on as people from all around the world respond to posts. Wishing your husband the best possible treatment X

[Wilfapoo]

Hi Alice111

My husband sees Dr Sanjay Popat at the Royal Marsden. He is excellent and I cannot recommend him enough! We had a similar experience with our local hospital and have been seeing Dr Popat since May. He is very positive, easy to talk to and we have a lovely nurse too. Because the royal marsden is a specialist cancer hospital they are very advanced in all the latest treatment options available. X

[alice111]

Thank you all for your help and advice. My husband had another Liver Biopsy today and goes next week for a GFR test on his kidneys. Once these test results are available I will make an appointment at The Royal Marsden and see Dr Popat if he is available. I think we will need to see him privately as we have waited so long that we dare not risk another delay. x Best wishes to you all