Mary,

Could you provide contact information for this NICE survey? I would like to contribute given I was treated 10 years ago and think I could provide useful long-term feedback into this process. My experience of the treatment appears on the 'Personal Experiences' section of this website.

Thanks,

Philip

Very happy with the results, during the procedure and for the following 3 months my cords and nodules softened and shrunk, and in the 10 years since the treatment I have suffered no further progression despite the disease progressing rapidly immediately prior to RT.

My concern over the NICE process, is whether, even if RT is approved, there will not be any significant uptake of the treatment in the UK. NA was approved by NICE in 2004, but surgery seems still to be the primary form of treatment. If you look around the NHS website and local hospital websites NA is rarely mentioned, open surgery is still apparently the only treatment.

I recently moved house, and spoke to my new GP about treatment for DC, he was of the opinion that open surgery was the only treatment. His concern with NA and RT, was that the published studies I discussed with him, did not have a large enough sample of patients and no or limited control samples. Hence I think it will be very difficult to persuade the medical profession to change their views on other forms of treatment. I guess the only way is to continue to make sure that the alternatives are well publicised on websites like this one and patients who do their own research, vote with their feet and seek out the alternative treatments as appears to have happened in the USA in the last few years.

Edited 07/23/09 17:03

Wolfgang,

You mentioned a symposium. Has it been scheduled? where and for whom?

Regards,

Lori

Philip,

I live in London and have the same concerns as you. I have to say that the British medical profession is always very reluctant to adopt new ideas that have been developed in other countries. To be frank, they have been practicing N/A successfully in France for a couple of decades, so you would think British doctors would have been curious and paid attention.

As a side issue, a friend of mine, now deceased, was an American working here in London and he developed lung cancer. He had one lung removed and it left him with a scar all the way down his chest. When he went home to New York, the doctors there said they had not seen an operation like that in 20 years!

I will either travel to France or to a doctor in the US.

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I spoke to my new GP about treatment for DC, he was of the opinion that open surgery was the only treatment. His concern with NA and RT, was that the published studies I discussed with him, did not have a large enough sample of patients and no or limited control samples. Hence I think it will be very difficult to persuade the medical profession to change their views on other forms of treatment. I guess the only way is to continue to make sure that the alternatives are well publicised on websites like this one and patients who do their own research, vote with their feet and seek out the alternative treatments as appears to have happened in the USA in the last few years.

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