Welcome to the club that no-one ever asks to join. If you’re reading this, the chances are that you, or someone close to you, has been diagnosed with Cancer.

This post started life as a response to a query from a newly diagnosed member of cancer chat who suggested I make it more generally available. I’ve expanded the original post a little to cover some of the more frequently answered questions people often have. There are a lot of commonly held myths out there, many of them based on a misunderstanding of how the NHS works. Few if any NHS staff go to work thinking “I’ll really mess up someone’s life today” but the overwhelming volume of patients and the limited resources available mean that this is all often the impact they unknowingly have.  Statistics ONLY work when applied to groups of hundreds or thousands of patients but us patients often try to use them the forecast our own chances of survival which can lead to despair.

Here's some of the myths …

1) Bad news and good news – “if someone insists on seeing me face to face, it must be bad news!”

Both good news and bad news ought to be delivered face to face. Never assume that face to face means bad news, or a telephone appointment means good news. I’ve twice had cancer scares. Both times a consultant insisted on giving me the news face to face. The first time it was a false alarm, the second time it was grim news. Both times I had lots of questions – the biggest one was “are you sure” followed by “what happens next?””

2) “If it was bad news, they’d have told me by now!”

Sadly, good news and bad news often travel at the same speed. As patients, we imagine the “system” (people, processes and IT systems) would prioritise bad news. It rarely does, instead NHS staff are simply overwhelmed with the volume of results and reports. As a patient, I’ve had consultants tell me more than once “this result arrived last week, but I’ve only just had chance to read it”. As an NHS IT professional, I’ve heard pathology colleagues in histopathology complain that results, which would normally take up to ten days to receive, have taken over six weeks simply because local capacity has been overwhelmed by demand.

If you think you’ve been waiting longer than you are comfortable with – chase it up!

3) “chasing NHS staff will make things worse, they might put me to the back of the queue!”

NEVER hesitate to chase things up (within reason). Human errors happen, vital messages don’t get passed on, letters fail to be posted (or get lost in the post). IT systems go wrong. Other people’s appointments get cancelled for various reasons, leaving a free appointment you could take up if only someone knew you were available.

Don’t underestimate the impact NHS admin staff can have on your experience. Medical secretaries and appointment clerks have far more influence than you might imagine. A phone call along the lines of “I wonder if you can help me? I’m worried sick about my appointment being so far away, I’d me more than happy to come in at short notice if there are any cancellations” might pay off. At one time, I was on first name terms with my oncologist’s medical secretary and the CT department’s appointment clerk. Why? Simply because I’ve worked as an NHS manager and know how keen people are to help and to avoid wasting valuable appointments. In job interviews, people always say they want to join the NHS because they “want to make a difference”, give them the chance to feel that they’ve helped someone today.

4) lies, damned lies and statistics. “I’ve been told that at this stage of my type of cancer the survival rate is as low as X%, so I can’t see the point in having the treatment with all those awful side effects”.
This is one of the reasons cancer care staff are so reluctant to quote statistics to desperate patients. In my case I was told that the 5 year survival rate was around 5%, which was sobering, but I asked some questions based on my experience of working with NHS statistics.
1) is that percentage based on all patients regardless of their age, general fitness, co-morbidities and medical history? The answer was a categorical yes.
2) which of these factors would have an impact on the outcome of any treatment? The answer was “all of them”. The older and less fit we are, the less likely our bodies will be able to recover from the side effects of treatment, if we’re already suffering from something like heart disease or COPD the higher the chances that adding cancer will make us worse, if our bodies have been weakened by something in our medical past that may have affected our general resistance to disease and our ability to recover.
3) can you give me a personalised estimate of how long I should expect to live? The answer was a categorical no.
It seems that whilst average statistics work well for large groups of patients, they are worse than useless when applied to individual patients. If you think about it, 50% of patients will live longer than average and 50% will die sooner than average because average is roughly the halfway point.
I rationalised my position as follows: at age 55 I was younger than the average cancer patient (cancer is primarily a condition of old age), I was physically fit and exercised frequently, I had no other life-shortening conditions and had fully recovered from conditions I had experienced in the past.
I argued with myself that a 5% survival rate equated to a one in twenty chance of survival but that many of those twenty would be older, less fit and more likely to suffer from other conditions than me. I concluded that I had at least a fighting chance of survival. Because of the fact that my cancer had grown around my aorta I had only two treatment options do nothing or chemo. I chose chemo.

5) “if I go private, I won’t be able to go back to the NHS when the money runs out!”
In an ideal World, the only advantage of private practice would be better hotel services on the ward and a slightly higher staff to patient ratio. Sadly, those days are long gone and even dyed in the wood socialists find themselves having to consider the private sector.  Your GP will be able to offer advice on what options are open to you. I’m luckily enough never having to go private but I do know that a GP referral to a private sector provider can reduce waiting times to access CT and MRI scans, endoscopies and diagnostic pathology tests to days, rather than weeks or months on the NHS. This should not affect your ability to access NHS cancer treatments once your results have been received by your GP. Private treatment as such is complicated and you should discuss that option with your GP or one of the cancer charities such as CRUK or MacMillan to avod going down a one way street.
Most NHS Cancer Centres now also offer private treatment with all profits being reinvested in local NHS cancer services. Just my view but this seems to be a bit like taking a long-haul holiday and paying into a carbon offset scheme such as tree planting. I hope I don’t have to make that choice in the future if/when my period of remission ends.

4) Some interesting facts for context.

in England alone:

1) the NHS delivers 1.56 MILLION appointments per day (Oct 2023)

2) 10,000 tests for cancer are carried out per day

3) of these, only 6% (600 per day) result in a cancer diagnosis

4) 85% of people diagnosed with cancer are alive after 5 years and just over 50% are alive after ten years (I find it hard to believe that I’m one of them as I was diagnosed at stage 4 in 2013).

All isn’t necessarily doom and gloom when we are diagnosed as having cancer. We definitely need to be realistic and not raise false hopes, but despair can lead to us making unfortunate uninformed choices.

I hope you found this post helpful and not too depressing! 

Best wishes
Dave