This week we put up another pancreatic cancer patient experience on the Pancreatic Cancer Action website. Each experience of pancreatic cancer, all written by the patients themselves, reflects the emotions, the physical and sometimes mental pain and also some of the triumphs, of patients dealing with a very difficult diagnosis and further punishing treatments. And the feedback we get from the public is excellent – no leaflet or website information page, no matter how good, can really tell it how it is and I know patients (including myself) really value these stories.
So when Jan approached us to tell her story, we were delighted she wanted to share. Jan’s story though has caused controversy because Jan has been diagnosed in time for surgery yet she cannot decide whether to go through with the operation. I have never had direct experience of this attitude before and to be honest it was one that shocked me.
My own reaction when I was diagnosed was one of relief that I could have an operation to remove my tumour. Ignorance about the disease at the time meant I didn’t actually realise how fortunate I was – that I am one of only 10% of patients to be diagnosed in time. A quick glance around the Internet (including on Pancreatic Cancer Action’s information pages) will soon tell you that currently surgery is the only potential for a cure and you would be daft not to take up the option. Pancreatic cancer statistics reveal very low survival for the disease yet if patients are diagnosed in time for surgery, their chances of living beyond five years increases ten-fold.
So it is not surprising that Jan’s story has sparked angry comments on the Pancreatic Cancer Action Facebook page. Bereaved relatives cannot understand the actions of the (and I quote) “Selfish Lady” Other comments have been very supportive and encouraging, coming from patients who have undergone successful surgery and are here to tell the tale many years later.
So, is she being brave or is she stupidly throwing away a potential lifeline?
Jan’s story is complicated by the fact that she had a terrible experience with a surgical procedure in 2009 and this, in my opinion, is making her fearful and is possibly clouding her judgement about her decision whether to have surgery for pancreatic cancer. Personally, I would implore her to have the surgery. Yes it’s a major operation and there are risks, plus afterwards she is likely to have to have further treatment in the form of chemotherapy. Jan though is young and fit and she is being treated in one of the UK’s pancreatic cancer specialist centres and is in good hands. This however, is not my decision; it’s Jan’s. I wish her well and I’m sure she will make the right choice – for her.
Click on the link to read Jan’s Pancreatic Cancer Patient Experience and do tell us what you think.