I was told at a young age I had NF, nothing more. As I got older around 18, lumps started to appear on my body. I went to my doctor he told me he thinks they were NF lumps, he checked to see if I had large brown spots he counted 6 and said they were cafe-o-laite spots which indicated NF1. He also told me not much is known about them here in Canada.. As years went by more lumps appear a new doctor informed me that NF could turn to cancer that if any changes to let him know. I had some lumps that were painful removed non cancerious they were. Five years ago they was a big change in my bowels I went to my doctor he said it was nothing, one year later it got worst, and I had lots of pain. I went back to the doctor he told me to go to physotherpy for the pain and the blood was just ployps disconnecting from my colon. That was the last time I saw him. Three years ago 2012. I went to the hospital for another matter, after a quick blood test and an xray, a doctor on duty told me I had to have a blood transfusion, and moe tests this time ct scan. That is when they discover a very large tumor in my small intestine. I had emergency surgery and they found 4 smaller ones. The surgeon removed them all. I went to the surgeon office for a follow up and he informed me that the tumors were cause by NF tumors turned to cancer. I have found out since then that there are lots of NF tumors on different organs through out my body. I have learned by almost dying that if your doctor tells you nothing to worry about push him/her to exam you mor closely or find a doctor who will. I have a new family doctor that knows my history with my former doctor and she is more attentive to my complaints.
Hi Charles. I'm in Canada too. Waving from Vancouver BC. #peacelovecure