My Story Begins with a Routine Checkup

My name is Lisa Nancarrow, I am 34 years old and I have been told by several Dr's that I am dying.  When I was 18 I went for my yearly physical where my Dr. found a mass in my stomach. After a few tests and an open biopsy I was diagnosed with neurofibromitosis, a genetic disorder where tumours grow at the end of the nerves. Typically the tumours grow just under the skin, unfortunately my tumour grew in my stomach. At that time Dr's decided not to operate as the tumour was not affecting my everyday life. They said if it did grow the tumour could be debulked.

In 2007 I started to have severe abdominal pains, in the beginning I was diagnosed with a kidney infection.  Then I began to loose weight. Finally the Dr's discover that the tumour had grown by a couple of millimeters. It was discovered that the tumour encased major organs and was attached to the nerves in my legs so surgery was no longer an option.

It was now almost the end of 2007 and I had lost close to 30 pounds and was basically on a liquid diet. The Dr's were not sure how to treat the tumour, so the next step was to refer me to an oncologist in Toronto even though the tumour is not cancerous. The trip was a waste of time as the Dr. had no advice for us.

Back to square one in Ottawa, I was referred to another cancer specialist which took another 3 months. He had seen my file and apparently had some advice. So with my fingers crossed I went to see him. To my dismay he said that after he re-reviewed my file, his only suggestion was palliative care. For the first time I burst in tears in the Dr's office, I basically told him to shove it and when he went out of the room to get some paperwork I left.

So the only option I had was to find my own solution. So back to the first Dr. at the General who was still looking into my file. After some consultations with other Dr's he discovered a experimental program at the Mayo Clinic in Rochester Minnesota which deals specifically with my disease. After a year and a half of no answers it appears we were finally heading somewhere. He sent my file to the clinic and they were willing to meet with me.

My Mum and I flew to Minnesota, met with the Dr and I went through a battery of tests. Fortunately I was in good enough health to be accepted into the program. We are now 4 months into treatment and I have been to the Mayo Clinic 5 times. It has been very difficult, I take daily chemo pills and my body feels like it does not belong to me, but in the end it will all be worth it.

A big thanks to everyone for all your support, I promise to keep you up to date as often as I can.

Take care,

Lisa