20 Nov

Markers are extremely telling for cancer suffers. In my case, the “markers” I’m referring to are the levels of CA 19.9. This is a numerical indicator of your cancer level. In healthy people it can be as high as 35 without a problem; in cancer suffers it can get up into the thousands.

There are a couple of issues that sort of go together with measuring markers: dealing with fear and what I call the “Hospital Syndrome”. The closer I get to the hospital, the worse I feel. It’s a physical feeling of being unwell – but there’s also an unsettling psychological awareness that raises its head, starting a few days before my bi-weekly chemo treatment. Fear and anxiety are serious, complicated issues. I’ll write about them in more detail later.

How important is the marker and who should be up to date with the marker level?  It’s easy to see whether CA 19.9 has gone up or down. The numbers are on the print-out you get after a blood test – 3 pages of “too much information” of different physical functions. Columns of chemical names or initials with queer sounding quantities, and too many numbers.  But CA 19.9. is there too, together with another cancer measurement: CEA. Knowledge and understanding are so important – so just spend a couple of minutes and find out where you stand. Ask your oncology nurse or doctor to help you read the print-out. 

So how do we understand the results? If the number is down are we doing OK? And if it’s gone up, are we to go into panic mode? There’s certainly no excitement waiting for your latest result – it simply adds to your anxiety and stress levels. The ABC of getting through this is to always try to reduce those levels. Nothing should phase you.

Let’s look at this more carefully. Firstly, medical opinion is split as to value of a numeric test. Objectively, do we know whether lab conditions were the same as the previous test, and whether a blood sample taken in the same conditions? Then, how are you feeling – both physically and mentally? If you’re feeling better, then believe it all the way.  And CA 19.9 is only one form of measurement. You can’t have a CT or MRI as regularly (or cheaply) as a blood test. Get the marker result into some proportion – it’s not the last word.

Who should be privy to the marker results? On this question, I make no compromises. It’s between me and my oncologist – and of course my immediate family. I’ve never shared this information with others nor told them when I’m having blood or any other tests. Questions in this area – even from the most well-meaning friends in the world – can add to your stress levels.

I well remember one of the marker tests a couple of months into my treatment. We agonized for days before over “what if” situations – CA 19.9 up or down? The day of the blood test dawned. The hospital can even give you a beeper so as you’Il know immediately when the results come out. The beeper beeps. A run down to the secretariat. Short of breath, with all the justification in the world, and surely we don’t have to wait in line? Except everyone else before us was an oncology patient too, each deep into his darkened world. Our wait ended with the news that the printer was on the blink. No problem – just ask at the nurses’ station. The nurses’ station had no nurses – too busy. Stress levels ratchet up another notch. The first nurse arrives – she doesn’t have the password to start the computer. Nor the second.  Stress levels ratchet up another notch. Then finally, a nurse clicks the computer into action. We take three calls on our mobile from anxious family members. Stress levels ratchet up another two notches. The screen scrolls up and I see my marker – with the result.  

 Today, I’ve taught myself to keep the marker measurements at the back of my mind – and share the numbers with no-one other than my immediate family. It works for me.



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