The Forgotten C in the the Forgotten C

It’s hard to speak with one voice, when some of us need to shout so much more loudly to be heard.

Some cancers are more forgotten than others. Some cancers are more affected by the Covid crisis than others. There is a #CancerGap!

Thursday this week was #WorldCancerDay. I was invited to speak at the #CampaignerConnections event, co-organised by Cancer Research UK, Macmillan, Action Radiotherapy, and Pancreatic Cancer UK. I was one of five people who shared their reasons for going public with their cancer diagnoses, and giving their time to campaign.

World Cancer Day is when the cancer community and charities come together to ask everyone to do something small to contribute to the progress of eradicating cancer.

A lot of the discussion, not least my own rundown of the Pancreatic Cancer UK #NoTimeToWait campaign, looked at the impact of the Covid 19 crisis on cancer screening, diagnosis and treatment. With very real concerns about the long term impact that delays in all these areas, caused by the NHS’ current focus on Covid, will have on cancer deaths in the years to come. The theme was The Forgotten C — i.e that cancer is being overshadowed by Covid 19.

It was said by a few people that “now is not the time to talk to our individual causes, but to speak with one voice.”

Now, I’m not meant to say this. And, it’s very much my personal opinion and not that of Pancreatic Cancer UK.

I fundamentally disagree.

Pancreatic Cancer is significantly more adversely affected by the current crisis than other cancers. The ONLY chance of long term survival for a Pancreatic Cancer patient is a Whipple procedure. This highly specialist surgery requires at least 3 days in intensive care.

And… intensive care is at the absolute fulcrum of the storm. I know that other areas are being affected by staff shortages, etc. but workarounds are possible. I had my chemotherapy in the Bristol Dental School, for example. There is no work around for life-saving surgery… you can’t pop up an HDU ward in a carpark.

So, right now, in the middle of this crisis, Pancreatic Cancer patients are being faced with surgical postponements and cancellations that are, essentially, a death sentence.

It was also said that “so much progress has been made with cancer deaths halving in the last 40 years.”

Again, brutally, that is simply not true for us!

The survival rates from Pancreatic Cancer have hardly shifted in this timescale. And those survival rates are horrifically low. Only 7% surviving for 5 years beyond their diagnosis. Half of whom die within just 12 weeks. Only 1 in 10 people with my diagnosis have their disease found in time for surgery to be possible, and that’s when the NHS is functioning normally!

Recent research by the Less Survivable Cancers Taskforce found that fewer than 4% of the public could identify the symptoms of the deadliest cancers. This is where the deadly layering of issues starts…

• Symptoms are missed by patients: they’re often indistinct, embarrassing and dismissed as minor irritations.
• Concerns are dismissed: I saw my GP for 5 years with symptoms like fatigue and bloating, which after initial testing for the usual suspects were dismissed as ‘one of those things.’
• Diagnostic pathways are not matched to the pace of the disease: If a GP suspects pancreatic cancer (7% survival, half within 12 weeks) there’s a two-week urgent referral for scans. If a GP suspects breast or bowel cancer (upwards of 70% survival), there’s a two-week urgent referral for scans.
• Timelines from diagnosis to surgery are inconsistent: I was on the table within 14 days. That’s gold standard… and it saved my life. I was days away from being inoperable due to the tumour positioning near critical vascular structures. A delay when you have a tumour in the head of the pancreas is like a delay for someone who has just been stabbed in the guts and has a blade against their life-giving blood vessels. You just can’t see it.
• Follow-up care is inconsistent: There is no one agreed clinical pathway for pancreatic cancer patients. Some have routine scans, tumour marker tests, dietician support, nutritional blood tests, others do not. If I’d had my digestive system messed around with as part of a gastric bypass, all these things would be standard. Because my digestive system was entirely re-plumbed due to cancer, it is not.

Injustice layered on injustice.

Then there’s research. Pancreatic Cancer represents 5% of cancer deaths in the UK, but receives only 1% of the funding. Is this because there are too few of us to be profitable? Is this because most people with the disease are in their eighties and ‘going to die anyway’?

All of this makes it hard for me to agree that now is not the time to talk about our individual causes. Some of us need a louder voice.

Some of us have been forgotten, not just during Covid, but for decades!

This is my personal experience, and my personal opinion, shared to give a perspective on living with pancreatic cancer.