Simon Bolton, Mesothelioma UK Specialist Nurse and Annabelle Neilson, accredited asbestos disease specialist discuss the latest Mesothelioma Trials and Research

Simon Bolton, Mesothelioma UK Specialist Nurse and Annabelle Neilson, accredited asbestos disease specialist discuss the latest Mesothelioma Trials and Research

Annabelle and Simon are both mesothelioma specialists but from different angles; Simon the medical side and Annabelle the legal claims side. They have teamed up to look at and to answer some of the common questions posed by mesothelioma patients regarding the treatment options available to them, including clinical trials, research studies and privately funded treatment.

I have been diagnosed with mesothelioma, what does this mean?

Simon - Sadly we know that mesothelioma is an incurable condition. I prefer to use the word incurable rather than terminal as life expectancy can be measured in many months and sometimes a number of years in some cases.

If we are talking about NHS funded, proven treatments then chemotherapy is the only choice however the following questions explore other options.

Annabelle – In addition to dealing with the knowledge that you have been diagnosed with an incurable condition, most patients also turn to how they have been exposed to asbestos and what options may be available to them to provide them with financial support at this difficult time.

We would always recommend instructing a solicitor with expertise in asbestos disease claims as soon as you are able to explore what options may be available to you.

Should I have surgery?

Simon - If mesothelioma is diagnosed at an earlier stage with no spread to lymph nodes and other organs, then your local team should be considering a trial called MARS2. This trial is designed to test if surgical treatment for mesothelioma is any more beneficial than the current standard of care treatment, which is chemotherapy.

The trial randomises patients between chemotherapy alone and chemotherapy plus radical surgery (pleurectomy and decortication). Anyone being considered for MARS2 needs to be fit enough to tolerate chemotherapy and undergo a big operation so it’s important to be aware that not everyone will be suitable. There’s no evidence to support operating outside of a clinical trial. Recent National guidance does not recommend surgery for mesothelioma unless as part of a trial.

Annabelle – As Simon has explained, there is no recommendation to undergo surgery for mesothelioma unless as a part of a trial. It is important therefore that you have a full and frank discussion with your available cancer nurse specialist about your desire for surgical treatment; it is not a minor operation. 

Should you decide to pursue surgery as a privately funded treatment, then as is explained later, there are different options available to finance your treatment.

Are there any trials I can take part in? How do I find out what's available?

Simon - In addition to surgical trials, there’s a number of trials looking at other treatments such as radiotherapy dosage (SYSTEMS 2) or new drugs such as immunotherapy.

Trials can open and close quickly if only a small number of patients are needed to take part. It’s difficult for local teams to keep up to date with current trials therefore its vital that local teams make links with their regional Mesothelioma UK nurse who are experts on mesothelioma research.

Further information about available trials can be found here and here.

Annabelle – Clinical trials are an important part of understanding mesothelioma and looking at new and better treatments. Whether or not you take part in a trial is a big decision and you will need to weigh up the options available to you and discuss them with your treating consultant and nurse. The NHS refers to this website where patients give their experiences of taking part in clinical trials.

Will any of the treatments prolong my life?

Simon - It’s important to consider quality of life and therefore if the side effects of treatments outweigh the potential benefits, then active treatment should be avoided placing the focus on managing symptoms.

Ultimately treatments are aimed at extending life expectancy but not at any cost.

What if I want treatment that isn’t available on the NHS? Where can I get advice on this?

Simon - Your legal team should be able to give advice on compensation that might include an agreement to fund expensive treatments that are not yet NHS funded.

Most oncologists would prefer to use standard treatment (chemotherapy) in the first instance as this is already proven to be effective for some individuals. Recruiting into clinical trials next is important in developing future treatments.

When these avenues have been explored, accessing non NHS funded treatments is another option. We always acknowledge that some people will not want to take the chance of randomisation and therefore most doctors and nurses will be happy to talk about treatments that aren’t yet available on the NHS.

Annabelle – We do not recommend to our client’s that they undergo any particular type of treatment, after all we are legal, not medical experts. We would however always advise that they seek advice from their treating consultants about the best options available to them and this may include privately funded treatment. If a patient opts to undergo privately funded treatment there are a number of options available to them as to how this treatment might be funded.

In the event that they have access to private medical insurance then this may cover the costs of the treatment they are seeking, this could be surgical treatment, chemotherapy, immunotherapy etc. If they then go on to have a successful compensation claim, then often the insurance company require that their costs be recouped as a part of the claim and this is generally a term of the insurance policy.

Alternatively, where a successful claim for compensation is made then the costs of private treatment can be included as a part of the claim, assuming this treatment is recommended as appropriate for the individual.

In the event that you are unsure whether or not you wish to undergo privately funded treatment, such as immunotherapy, at the time of settlement of your claim, then provision can be made for this as a part of the settlement to ensure your options are left open.

If neither of the above are available to you, then you may wish to fund your own treatment. However, treatment can be costly it is therefore important to explore all options available to you. 

Who should I speak to about my treatment?

Simon - Everyone should have access to a local lung cancer nurse specialist who will be able to provide excellent support. The local lung cancer nurses should be aware who is the Mesothelioma UK Nurse Specialist in that region and can refer to the service for expert advice.

Mesothelioma UK has a Free National Helpline number (0800 169 2409). A nursing expert is available Monday-Friday 8.30-4.30 to offer advice and support.

Annabelle – It is important that you take expert advice about the treatment options available to you. Mesothelioma UK are an excellent source of knowledge and have an extensive website with information covering your options.

What happens if I don’t respond to my treatment?

Simon - Your oncologist should be able to talk about what options are available when one particular treatment either hasn’t worked or has stopped being effective.

The service was personal, professional and considered. I was treated so kindly and in the end I knew that not only had I found the right organisation but also the right person.

Boyes Turner client

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