23th February 2019 - Exploring further options

Once I got rid of the side effects of the first round of chemotherapy, which luckily were limited to the first couple of days, I devoted my energy to learn more about my cancer and to think about the best strategy to tackle it.

Options like immunotherapy, which are making huge inroads as far as other cancers are concerned, are still at an early stage of development for pancreatic cancer.

However, targeted chemotherapy drugs can be used for people that have specific DNA mutations in their cancer. It was in this context that my oncologist suggested that it may make sense to do a genetic profiling of my tumour by sending my biopsy sample to an American company to undertake a full analysis of my specific cancer. A long shot, and at £3000 not particularly cheap either, but in the context of my willingness to leave no stones unturned, I decided to go for it.

I also wanted to learn more about the surgery option and, with the help of a friend who first pointed it out to me, I started reading about the European Pancreas Center at Heidelberg University Hospital. Heidelberg’s centre specialises in pancreatic cancer and the doctors there perform more than 800 operations every year.

Crucially, they apparently undertake surgery on patients whose tumour has spread to the liver, as long as the number of metastases is small. That was not my case – I had more than 20 metastases in my liver – but I did have some hope that chemotherapy could kill most of them.

In short, my review of the material I found on the Internet suggested that the threshold I had to pass in order for surgery to be deemed viable was somewhat lower in Heidelberg than what had been described to me by my oncologist, and even by the surgeon, in London.

Indeed, I found a number of examples of patients who, having been denied surgery in the UK, ended up travelling to Heidelberg and undergoing seemingly successful operations.

I also found out that according to a 2017 study commissioned by the ABPI, which reported on the state of cancer care in Europe during the period 1995 to 2014, UK cancer survival rates lag significantly behind the European average in 9 out of 10 cancers. For example, the UK apparently has the worst survival outcomes across Europe for ovarian cancer, the second worst survival rates for lung cancer and for pancreatic cancer.

In particular, according to the study only 3 per cent of pancreatic cancer patients survive more than five years (ahead only of Iceland – 2.56 per cent), while the European average is 5.84 per cent.

Still in 2017, The Guardian published an article, which as well as summarising the key results of the abovementioned study, it also contained an interview to Emlyn Samuel, senior policy manager at Cancer Research UK at the time, who noted:

“While we have seen really big improvements in our survival in areas like breast cancer, prostate cancer and testicular cancer, there are some other cancers like lung, pancreatic, brain and oesophageal cancers where we really haven’t made as much progress as we would like”.

The article further noted the following:

‘The report shows that the UK is slower at adopting innovative cancer medicines than other countries and that is a concern, and something we want to see movement on,’ he said.”

See more here

Despite taking the views of my oncologist in high regard, after reading all of this, I decided to get in touch with the Heidelberg people to see whether I could widen my options and improve my chances of survival.

This was quite straightforward: all I had to do was to submit the required information and scans online and, within a matter of a few days, a case manager was assigned to me, who shortly after would deliver the views of the medical team and allow me to ask questions about them. All of this was done free of charge.