Hi I am Nadia.
I am 24 years old. Since 2001 I had been feeling ill with upset stomach, weakness, and just a general feeling of being sick. The doctors told me I had IBS.
In 2003 I was diagnosed with NeuroEndocrine carcinoma. In Toronto they told me I had a tumour in my lung. My doctor was one of Canada’s leading doctors for thoracic care. He removed my left lung and the lymph nodes around it. He told me he got everything and that I will live a normal life and there was a 95% chance the cancer will never come back. I did dye injection CT scans every 3 months to make sure I was clear. Each time I was told there was no problem whatsoever.
I started complaining about pains in 2004 and 2005. The doctor told me it was probably just muscular. On July 1st 2006 I got married, and in September of 2006, I began getting worse. I had 4 infections in a matter of 2 weeks. My back was all swollen. I went to the emergency room, where there they told me, without thoroughly examining me, that I must have pulled a muscle. They told me to go see my family doctor. I had a CT scan scheduled for September. I told the doctor about my discomfort and showed him some swelling in my body. He then referred me for an MRI. And what happened next completely changed my life.
I was told I had multiple tumours along my vertebrae, my hip bones, and my pelvis bones. I was told it wasn’t good. I was referred to an oncologist. The oncologist felt it was best if I did treatment for comfort care which means: why do treatment now and suffer, when you can do treatment when you’re suffering to ease the pain?. I was told people only live 6 months to a year. I was distraught. I felt so lost and confused. I was 21 and thought I was going to die. I asked for treatment right away.
While I was waiting for the treatment, I did some research and found a hospital in Sweden that specializes only with NeuroEndocrine cancer. I called the doctor there and he agreed to see me and told me that he may have some treatment for me.
On November 24, 2006 I got on a plane, went to Sweden and met with my new doctor, Dr.G. I brought with me all the CT scans that I had had in the last 3 years. He reviewed them and did a biopsy on the spine to confirm. The news I heard next was shocking and unbelievable. I had had these tumours since 2003 when they removed my lung, and as each year went on, the tumours had progressed visibly.
I started treatment in Sweden. It is chemotherapy used for brain tumours, but the doctor had seen positive effects in patients with NeuroEndocrine cancer. So now all I had to do was go home and find an oncologist who would monitor me.
That in itself was very difficult to do because many doctors didn’t want to deal with me because I had gone overseas. Those specialists who agreed to see me wanted me to stop going overseas and take their trial drugs. Once I told them I would not be doing trials, only proven treatments, they disrespected me and told me it’s best to go to my original oncologist in Toronto. So that is exactly what I did. They offered to help me and have been doing so ever since. Even though they may not know as much about this disease as European doctors, and don’t have as many treatment options, they can see that this drug
I am taking is working. In March 2007 I had a routine eye exam and my optometrist told me I had spots in my eyes. She sent me to an eye oncologist, who confirmed the cancer had metastasized to my eyes, but the cancer had been there for about 2 years and the tumours had been already responding to the chemo treatment.
I went to Sweden again in April and September of 2007 and both times Dr.G confirmed the cancer is now stable and has not spread further. It doesn’t even seem like the tumours are fighting against the chemo, basically they are just there.
It’s now been 3 years since I have started treatment and my eye tumours are completely gone, my bone lesions are healing and I feel wonderful. There are a few areas of concern in my right lung, but they are very small and are not solid. It is probably not malignant but the doctors at PMH and Dr.G in Sweden will keep an eye on any changes.
Dr.G told me I should have a 5 HTP PET Scan, which is not available in Canada but which would help determine what these lesions are. So, in July 2009, my friend held a beautiful benefit concert for me in Toronto to help pay for my visit to Sweden. The cost to go to Sweden each visit including air fare, doctors visits, and hotel, is roughly $8000. I went to Sweden in September to see Dr G.
I didn’t have the scan because my doctors felt that since I was feeling well and the lesions on my lungs are very small (4mm) and the scan is expensive, I should only have the scan if and when I needed to sometime in the future.
Currently, my breathing has improved and my lung seems stronger. I am able to run, dance, sing and even swim laps. I am very blessed to have found the doctor that I currently see and most importantly, I am very blessed to be alive and feel well.
Nadia
December 2009