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
