The Roy Castle Lung Cancer Foundation
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Go private for diagnosis only?

Hi All

I posted last week describing my mum's situation with stage 4 lung cancer (we think) with brain mets.

She's been taking steroids for nearly two weeks now, since the initial diagnosis, which has helped with some of the symptoms of the brain mets. I.e. double vision, and balance.

We want to get a 2nd biopsy done as soon as possible to find out what sort of cancer it is, e.g. is it actually lung cancer, and does it have the gene mutations for ALK or EGFR which would hopefully enable some targeted chemotherapy.

We've not been able to get a date set for this 2nd biopsy yet, they are only performed on Friday at the north staffs hospital so the very earliest it could be is Friday this week then we'll have to wait for the results of an analysis, before even any talk of treatment can begin. In the meantime, I'm worried that the cancer is growing and spreading, mum's getting increasingly confused to talk to.

Out of desperation really we're wondering if we can speed up the process a bit by paying to get the biopsy and analysis done privately, but then go back to the NHS for treatment. Has anyone here done this or know if it's possible?

Thanks

Rich

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Hi Rich

So sorry to hear about your Mum's diagnosis and the shock you must all be still feeling.

There are a few things to consider in requesting a second biopsy:

A Doctor will not perform this if your Mum is not keen for the biopsy. If your Mum is happy to proceed then your Specialist may refer your Mum privately for this to be done.

However it may be that you wish to consider a second opinion, either on the NHS or privately (Instructions on how to do this have been detailed on our previous reply)

Targeted therapy , depending on the gene mutation, is sometimes recommended as a second or third line of treatment, after a trial of chemotherapy. The information below is taken from our booklet on brain metastasis:

"In only about 10% of NSCLC cases, these tests may find changes in the

EGFR (epidermal growth factor receptor) gene. For these people, treatments using EGFR inhibitors such as afatinib, erlotinib and gefitinib (brand names Giotrif, Tarceva and Iressa ), and osimertinib (brand name Tagrisso ) where there is what’s known as T790M mutation, show effectiveness in treating brain metastases where enough of the drug is able to cross the blood brain barrier.

A lower percentage of patients (2-7%) test positive for the ALK (anaplastic lymphoma kinase) gene, and these cancer cells show some sensitivity to ALK inhibitor targeted therapy drugs. Currently approved drugs ceritinib and crizotinib (brand names Zykadia and Xalkori ) are shown to be effective in treating brain metastases."

Gene mutations can change, therefore the specialist may recommend a treatment plan first then re biopsy to ensure the targeted therapy matches the current gene mutation.

There can be a lot to consider in the treatment plan, do call your Mums lung cancer specialist nurse or GP to discuss. The care of those with cancer is much better now with many improvements in treatment options, especially for your Mum in reducing symptoms and promoting comfort for her.

I have placed some useful links below:

cancerresearchuk.org/about-...

There are also clinical trials your Mum may wish to think about, the link for these are:

cancerresearchuk.org/about-...

There is lots of useful information on the Macmillan web site:

macmillan.org.uk

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

All the very best

The Roy Castle Support Team

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