1800 654 301 Information and Patient Support

Belinda’s survival story – What a miracle!

Belinda's photo resizedI was diagnosed with stage IV lung cancer just over five and a half years ago.  The only indication I had that something was wrong was a pain in my back that I couldn’t get any relief from. I went to physiotherapists, chiropractors masseuses and doctors who didn’t know what to do with me.

One doctor even sent me for an ultrasound to check my ovaries.

One morning in particular I woke up in agony as per usual and I just couldn’t get out of bed. It just hurt too much to get up. A voice in my head told me to go to Epworth which is a private hospital here in Melbourne. A friend drove me in, which I remember was absolute torture.

They were really busy so I didn’t end up getting a scan until early the next morning. I was told I had something suspicious in my spine but I needed further scans to be done. I had a CT scan and soon after an oncologist came in to tell me that the suspicious spot on my spine was lung cancer. I also had tumours in my lung, spine, ribs and possibly my liver.

I wasn’t completely shocked that it was cancer as the pain was nothing I’d experienced before, but I was shocked that it was lung cancer. I’d never smoked.

I was kept in hospital for a couple of weeks where they took biopsies to check for mutations, gave me radiation for pain management and  medication to keep my pain level down to something manageable.

I got out of hospital with instructions to enjoy Christmas and come back in the new year as they would have the results from the biopsy then. It was strange to go home not knowing what treatment I’d be on. Christmas just wasn’t the same.

In the new year I found out I had an EGFR mutation. It was then that I started on a targeted therapy.

During this time, I went and got a second opinion as I just didn’t like the original oncologist’s bed side manner. I also got some eggs frozen even though the oncologist told me there was no point.

I went quite well on targeted therapy. The cancer stayed fairly stable for 2 and a half years. In that time, I didn’t feel totally great but was still well enough to go on a trip to USA with my lovely boyfriend Peter who proposed to me in New York. Peter not only became my fiancé, he was also my carer, advocate and friend. He’s been an amazing strength and he’s always got my back.  It’s not easy navigating the medical system when you’re unwell. It’s great to have a tiger on your side.

The cancer started to grow soon after. It had become resistant to the drug. I was put on another targeted therapy but it almost killed me. It made me really sick and I was in hospital for about 2 weeks.

It took a while to recover from this setback. It was then that I started on chemotherapy.  The first lot was too hard on my body and I couldn’t continue to take it. I only had one and a half cycles out of 8. My body took a while to recover again. In that time we decided to get married. The day we met the celebrant I was in hospital with really low blood counts, getting ready for a blood transfusion.

The wedding itself was lovely. We had it at home with our fur babies in the wedding and mainly family and a couple of friends. I wasn’t on any treatment at that time but it was the best I’d felt in quite a while.

I went back to the oncologist for more scan results, only to the learn that the cancer was still growing. I started on another type of chemotherapy but unfortunately the same thing happened again where my body couldn’t tolerate it. At this time I tried to get on a trial for a new targeted therapy but because of the location of the cancer, it was too dangerous to take a sample.

The next lot of scan results revealed that I had brain tumours. That totally floored both Peter and I. I had an MRI that afternoon and was in seeing a brain surgeon the next day. It turned out that I had three brain tumours that would need to be removed in two separate surgeries as they were on different sides of the head.

I went into hospital the following week for the two surgeries and went back a few weeks later for whole brain radiation. This was a really tough time for me and Peter. I was really unwell and couldn’t stay awake. Peter nursed me through this time which was quite stressful. We were really lucky that we had a little caravan and Peter would drive us, including our puppies, up to Mount Beauty where we could just relax and sleep. The mountain air did wonders.

Because of having the brain tumours removed, they now had a sample to test to see if I had the right mutation for the trial that had started. I had the matching mutation so started on a trial at the Olivia Newton John Cancer Centre.

I’ve been on the trial now for two years and found out about 3 months ago that I am in complete remission. I’m still finding it hard to get my head around it.

Not long after I started the trial, I was in less pain. A couple of new tumours seemed to have disappeared not long after starting on the trial drug. It has kept the cancer stable for quite a while and then the scans started showing that maybe the marks on my bones weren’t cancer anymore. It looked more like it had calcified or was scarring. After being told this a couple of times, Peter asked if I could have a pet scan and it came back clear. There was no sign of cancer.

After 5 and half years of treatment for lung cancer, the cancer has left the building. What a miracle! I know I can never say never when it comes to cancer returning but over the five years of treatment, I was never told there was no evidence of the cancer.  What a miracle!