12th March 2020

Tony’s Story – Living with lung cancer and kidney mets

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Today is World Kidney Day [12th March] so we checked back in with Tony from our Follow my Lead campaign to see what life is like living with stage four lung cancer and kidney metastases.

“When I first found my cancer had spread to my kidneys I was devastated.

I was diagnosed with lung cancer in March 2015. At that point the prognosis was good. I had surgery to resect the upper lobe of my right lung. This was then followed by a three-month course of chemotherapy to mop up any rogue cells.

I finished chemo in September. Then in early October, I was passing blood in my urine. I was admitted into hospital where I was given intravenous antibiotics for an infection. I also had a CT scan which showed cysts on my kidneys.

The clinicians were not concerned but wanted to do an internal examination of my bladder to make sure there wasn’t anything sinister going on in there.

This was an interesting experience! There’s only one way to get a camera into your bladder and, let’s just say, the camera was no where near as small as I thought it was going to be!

The results came back all clear and the antibiotics seemed to do the trick, so I thought everything was ok.

However, just a few weeks later I was suffering with a persistent headache and readmitted to hospital. It was then that I received the devastating news that the cancer I thought had all gone had actually spread to my brain and the previously diagnosed kidney cysts were now cancerous.

I was shocked. I had convinced myself that once I had completed the course of chemotherapy, I would be cancer free, and now I was being told this was a terminal diagnosis and the only treatment available to me was palliative. It was utterly devastating.

Genetic testing

After receiving the news my lung cancer was now incurable, my oncologist arranged to have the primary tumour tested for a specific mutation called Epidermal Growth Factor Receptor (EGFR). The test came back positive so I could have a targeted therapy drug called afatanib.

I started taking afatanib in November 2015.  By January 2016, the brain tumour had reduced by 53% and kidney tumours by 47%. Over the next year, the kidney tumours shrunk so much that they were classed as scar tissue and not tumours.

As with the nature of targeted therapies, afatanib stopped working for me in February 2019 and the tumour in my right kidney had started to grow again. I then tested positive for the mutation T790 and started on another targeted therapy, osimeritinib, in April 2019. So far, this is keeping the tumours under control.

Moving on with mets

I’ve now been living with lung cancer and brain and kidney mets for over four years.

The kidney tumours shrunk so much that they were classed as scar tissue and not tumours.

Life is a new normal. The medication I take has some mild side effects including diarrhoea, upset stomach and skin rashes. I’ve had to make some adjustments as I learned to manage and live with these side effects, but now my diagnosis doesn’t really stop me doing anything or being able to enjoy my hobbies of gardening and keeping fit. It doesn’t stop me eating or drinking anything. The only impact is that its extremely difficult and expensive to get travel insurance now my cancer has spread.

That didn’t stop me walking my daughter down the aisle though. She got married in Italy in September 2018 and there was a slight part of me that feared I wouldn’t be here to give her away. But I did and it was a beautiful day.

Currently, life is good. Since taking part in the Follow my Lead campaign and seeing first-hand the impact the charity is having, I’ve joined its Roys Runners group and will be taking on the Great North Run in September. It could turn out to be a bit of stroll, but I’ll get round – one way or another! After all, I’ve faced bigger challenges.”