Is there anyone out there who has a malignant pilar tumour of the scalp, or knows someone that has. Noone at my hospital seems to know anything, and I have to show them the scarce bits I have found on the internet myself. My consultant said I would have lots of follow ups, but not with him. I've had 2 follow ups, both by very young women doctors, who were probably perfectly able to do follow ups, but couldn't answer a single question about the tumour or what was found when it was removed. Neither of them would comment at all about my prognosis (unknown whether or not | would make the 5years survival) - which is obviously a dark cloud hanging over my head and creeping into my nightmares.
thank you, if anyone has read this! My friends and family are bored with my head now (it's been 6 months since it all started - leaving me a maximum of 4 years left?) so I keep quiet and carry on. Luckily I mostly feel physically fantastically well and have more energy now than I ever had when I was young. I go to 6 ballet classes a week xxx
