John Rowe

John Rowe was diagnosed with Cholangiocarcinoma Cancer of the Bile Duct after visiting his GP for heartburn pain. He knew something was wrong, but would never have guessed it would change his life forever.

John shares his story with us.

“It was September 2012. I visited my GP for something to alleviate the gnawing pain of heartburn. It was evident something was wrong and he sent me for an ultrasound which began a journey I did not want to be on.

I was diagnosed with Cholangiocarcinoma. Cancer of the bile duct. A 12cm tumour was growing around my bile duct and into my liver. As with all cancer families, our lives were put on hold. Everything we did revolved around tests and procedures, visits to hospital and the unknown future.

I was very ill. My liver was saturated with bile. An external biliary drain was inserted into my bile duct and for six weeks bile drained continually into a bag which I had to empty several times a day. I lost weight, my poo turned a pale clay colour and I felt nauseous all the time. The tumour had impacted 80% of my liver. It was too risky to attempt removal by surgery so the decision was made to perform a portal vein embolisation to try and force the 20% of my liver which was free, to grow. The procedure failed. My liver did not grow. I was one of the minority where the tumour, rather than my liver, absorbed the nutrients from the embolisation. It grew to 18cm. The news was devastating.

My medical team did not give up on me, they assessed my suitability for SIRTEX TACE (Trans arterial chemo embolisation). A procedure used to restrict a tumour’s blood supply and stall growth on inoperable liver tumours. I was warned there was only a 50% chance of success, dependent on whether the tumour would be receptive to the treatment. The aim was to potentially shrink the tumour and extend my life. During a long three hours, the radiologist mapped tumour feeding blood vessels and three weeks later millions of radioactive microspheres were injected via a catheter directly into the tumour. I was advised necrosis of the tumour could make me feel unwell, an indication the treatment had been effective. The sicker, the better, a positive indication my body was eliminating dead tumour tissue.

I waited, hoping to feel sick. For a couple of days I remained disappointingly well, until gradually I began to feel feverish. Within the week, I felt so unwell I had to make an early morning trip into emergency. After more tests and scans, I received the amazing news that the tumour had shrunk by 11% and was likely to shrink even more. I couldn’t believe it. Necrosis of the liver continued and although still slightly nauseous, I started to gain weight and my skin began to regain a healthy colour. I was able to return to work. After a routine scan several months later, to everyone’s amazement, the tumour had completely gone.

I still have a stent in my bile duct which needs maintenance every 3 or 4 months and my liver will never be perfect. There are no promises that the cancer will not return, but I don’t take any medication, I am alive, and I am healthy.”

If you are experiencing any symptoms of that are not normal for you, contact your local GP.

If you would like more information on bile duct cancer, please click here.

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