I have recently been diagnosed with this cancer, and would be interested to know if anyone else has the same diagnosis.

I believe that this cancer is rare, and checking the internet has not been too fruitful.

Basically, all it says is that there are only between 19-25 cases recorded in English litreature, studies have been done on 3 people.

Does any one have any further information?

If not, I have a blog that has recorded all my feelings, treatments etc. on a daily basis since diagnosis.

Web site below.

http://www.confessionsofacancerpatient.blogspot.com