18th March 2014 – A day we’ll never forget
Sadly, life has just changed beyond all recognition again. The statistics below show the prognosis specifically for Pancreatic Cancer, so this is not a surprise. The possibility of surgery was the unexpected thing. The current situation was far more likely.
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Team Sue are all going to be out there, rain or shine 🙂
Yesterday, after new scans, my Mum and I were told her cancer is no longer operable. All other standard treatment options have largely been ruled out. An operation is currently the only hope of a cure for Pancreatic Cancer. 80% of people are already inoperable when diagnosed, with a prognosis of less than 12 months. She has done better than most, we’re already almost exactly 7 months post diagnosis and based on median statistics that’s a lot.
We will continue to campaign for signatures on Maggie’s epetition. If we can get 100k signatures before 8th April (UPDATE: WE DID IT) it will compel the government to discuss the appalling lack of progress with pancreatic cancer innovation and diagnosis in the last 40 years. Maggie is incredible and I tell her personal story HERE.
IT’S NOT ENOUGH
This cancer is notoriously resistant to chemo and radiation. Research into new treatments is desperately underfunded and has an uphill fight against other better publicised and supported diseases, despite it now being a leading cause of cancer related deaths..
There is also a heartbreaking irony with Pancreatic Cancer research. There are too few guinea pigs. Too few patients & doctors are well informed enough or proactive enough to find trials before they become too sick, or undertake debilitating treatments that make them unfit or ineligible. The irony continues with the fact that few drug treatments are more than tweaks to old regimes so the expected benefit is often only 2 – 6 extra months. Longer term follow up is therefore poor to non-existent. The difficulty accumulating the same number of “test subject hours” for PC versus something like breast cancer is another giant reason why PC prognosis has changed little in 40 years.
It’s likely Mum’s cancer had invisibly spread before or during her initial chemotherapy. Protocol states that chemo must be tried before more novel treatments, despite the poor chance that chemo will prevent metastasis. Virtually no-one is diagnosed early enough to catch this disease before it spreads, because there is no easy diagnostic test.
We are on the cusp of a number of breakthroughs in non-invasive diagnosis, genetic matching for treatment and immunology, but the average time between initial research and free availability of new treatments is 17 years.
There are some new treatments already in later stage trials, but time, money or strict eligibility criteria prevent Mum benefiting. No freely available treatments can change our current situation. If she does find novel treatments that might help, she, may have another fight on her hands, one she’s not sure she’s still strong enough to face.
Our family does not want anyone to deal with a day like yesterday. Let’s make that less likely for as many people as possible.
Postscript: Sue, our Mum, died almost exactly 2 months after this post, from complications relating to a bile duct stent blockage, made life threatening due to her weakened state from both the cancer and treatment. She will be forever missed.
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