19 March 2006

Suzanne’s story

Suzanne Long lives in the UK, but until now she has looked towards America for information and support.

In September Suzanne Long 2005 she travelled to a NET conference in Philadelphia, America where she was pleased to find she had ‘instant access’ to some of the country’s top doctors.

Suzanne writes about her own experience and reports on some of the US links.

In April 2004 I was diagnosed with a non-functioning NET thought to have originated in the pancreas.

This was after various mis-diagnoses including irritable bowel syndrome skin cysts, stress and pulled muscle, a pattern it seems common to so many of the 350 patient attendees at the conference.

This followed five years of intermittent abdominal pain and investigations culminating in a biopsy of the ‘cysts’ which proved to be metastases from the primary, which by then had also spread to my liver, lungs, bones and lymph glands.

Coming to terms with such a diagnosis was of course overwhelming, but I was fortunate to be scooped up and carried along by an expert oncology team at my local hospital in Oxford who stated me on a course of 12 fortnightly cycles of 5FU and Streptozocin.

By November 2004 the tumours were stable at worst or had shrunk by 50% at best. Over the course of 2005 these have remained relatively stable, although symptoms of pain associated with the nature of the hormones produced by the tumours and the metastases on the spine have at times been severe and unpredictable.

This period of stability has allowed me time to come to terms with the disease and to start to find ways of being pro-active in my treatment. Wading through websites, talking to specialist doctors and nurses and trying to track down other patients with similar problems has been hard.

However, the Philadelphia conference proved to be valuable and I now feel better armed, informed and whilst the whole subject remains extremely complex I am staring feel that I know where to go to get the information that I need. More important than that, I feel more positive about the future and remain confident that I am in the hands of top experts.

However, the conference continued to highlight that NET cancer is considered an orphan disease with only 20,000 patients registered as suffering from the disease in the US – only 1-2 cases diagnosed per 100,000 population each year and only 15% of that figure presenting with non-functioning NETs of the pancreas. Patient groups and doctors in the US are therefore working hard to raise awareness and encourage funding since it is believed that many cases go un diagnosed due to the ignorance of many doctors and the difficulty of diagnosis.

The conference was solely directed at patients, and offered an outstanding array of speakers from a cross section of specialist areas. Whilst all the speakers were based in the US it was clear that they worked closely with colleagues in Europe, most notably Rotterdam and Stockholm where pioneering trials had been followed in the US.

The most excitement in terms of new developments was centred around the following:

• better targeting using genetic information
• The better use of drugs (new chemo drugs, new ways and combinations)
• Identifying new cell targets- i.e. targeting the brains behind the cancer by targeting the receptor cells
• targeted surgery to reduce tumour burden
• New scanning techniques

In conclusion, all these developments pointed towards finding a cause and in the future identifying a cure. But in the meantime, statistics time and time again showed a much longer survival rate than had been seen only a few years ago.