Scanxiety

Scanxiety is a well used word in cancer survivorship, but I have added a new one - adminnoyance. What can we do on each side of the doctor's desk, to minimise one and maybe even abolish the other?

Photo by Derek Lynn on Unsplash

Den has had his annual CT scan.

Things are easier now. It's been over 5 years since his original cancer and 2 years since his recurrence. The odds of another recurrence are lower now we've passed those milestones.

The word scanxiety entered the lexicon in 2011 as a doctor writing in Time magazine coined the term, describing scans as ‘revolving doors . . . emotional roulette wheels.’

I think this depicts things perfectly.

The anxiety relating to results on a cancer journey is one of the first experiences for patients and their carers. The very first test, when you are still in the ‘it won’t happen to me' camp; the subsequent tests where you have entered the ‘it is me, but how bad is it’ camp. And then, after treatment and good outcomes, the ‘it could be me again’ camp. Never again the ‘it won’t happen to me'. Because even though the odds are improved in his favour these days, you never forget. The odds are better, but the stakes are higher, as bad news at this stage could be that most feared, unwanted ending to the whole story.

So our collusion of silence is back. We are both getting on with normal life, but there is a private hell that goes on in our heads. We don't share it with each other, as we assume the other one is doing a better job of distracting themselves from it. We don't want to increase their anxiety. I picture a bad outcome to protect myself from the shock of it, if it comes. This is a poor coping mechanism, and I keep that at bay mostly these days. Den focusses on hoping for reassurance, to be able to forget about the cancer or another year. In our own ways, we prepare for the worst, hope for the best.

It’s only once a year now, but it’s a glimpse of the old darkness. It reminds us of uncertainty about the future; the fragility of survival. Den simply cracks on in his usual way: his blithe opinion that he is on ‘borrowed time’ helps him to make the most of every day and not dwell on fear. I find myself checking the literature to see if I can put a percentage on the risk of finding a problem. You can’t: Den’s journey has been so convoluted that there are no studies to show his exact scenario. I reassure myself that he looks well; there are no red flags. And that is much easier, now than it was in those early days when the bad news kept rolling in.

But there is no peace in cancer survivorship. Just relative peace. And, while we welcome the option of a scan, our relative peace will not return until he has his results.

We know now that the anxiety relates to many things. Of course, mortality is the main one. Concern about treatment options, how they would be tolerated, if there is a problem. But there are practical anxieties as well. And I would add another new word to the lexicon - adminnoyance. Because when you’re scanxious, you are more sensitive to delays and miscommunication.

This is my list of adminnoyances:-

1. When will the test be? Will we, as is often the case, pass the date it would be due, and have to chase it up, to find out that someone forgot to book it? This is what happened this time. It was arranged once we phoned, but should have happened anyway, as it was planned a year ago, after the last one.

2. Have we received and followed the instructions given on the appointment letter, about fasting, omitting certain medicines prior to the test. We have had instances of cancelled procedures due to not being given the correct prep instructions.

3. This one's worse for the patient -will the test itself be uncomfortable? Den has had so many CT’s that he doesn’t get anxious about them - even if it’s with contrast, and they struggle to get a needle into his elusive veins. He’s used to it. Scans can be stressful for many, though: the feeling of being a number, the claustrophobia for some, the difficulty with lying still on your back if you're in pain, or have a breathing problem. Having your test with a capable, compassionate member of staff helps enormously.

4. How, when and what the results will be when delivered. This is the big one.

How we will receive the results is more tricky than you might think. Take this time, for example. For the CT results, he was told that he would receive a letter if all was well, and a phone call if any further action was needed. That the letter should arrive within 4 weeks. So we know what to expect there. Other times, we have been told, 'we don't usually contact you if it’s OK so no news is good news'.

I’m afraid that I don’t buy into this point of view. What if the results simply go astray and are not actioned by anyone? I understand that focus necessarily goes to the patients with problems that require actions. But isn’t reassurance also a task for the medical team? Is it really so difficult, with a normal result that requires no action, to let the patient know? Can the hospital IT systems not cope with creating an automated text message stating that the result was normal? Would it be beyond the scope of the specialist nurse or the secretary to give us a quick call to say all is well?

I’m afraid that as both a doctor and a patient, I have come across situations where a patient has accepted the ‘no news is good news’ approach, only to find out later that something went wrong with the admin processes, and in fact the result did require action. This can lead to missed opportunities for treating a problem at an early stage. I don’t trust hospital admin so I will always favour the ‘some news is necessary’ approach. Even if we have to phone for it ourselves.

Often, there is a follow-up appointment made in clinic where results will be given. This is good as it allows for a plan to be explained at the same time as the news. But this will be arranged many weeks ahead, to ensure the results are back - accepting that delays happen. Last year, we had a full 8 weeks from tests to results day. At the 6-week mark, we phoned. We’d had enough of climbing the walls thinking, is it no news is good news? Is it bad news and they are waiting to tell us face to face in clinic? Could we get to clinic only to discover that the results are not there? This might sound like anxious overthinking, but we have had every one of these scenarios, so this level of scanxiety, or adminnoyance, is completely justified.

So the bottom line is, when patients have their tests, they NEED to be told their results ASAP whatever the outcome.

Reassurance, as soon as possible, allows them to resume their normal life. And advice and actions, in the event of an abnormal result, are better if given in a timely fashion.

Even reassurance calls can backfire if not done right. I remember, five years ago, as Den was about to begin radiation treatment, having had two cycles of chemo. The consultant told him, 'you will have your scan this week and then begin radiation treatment next Monday. I will phone you if the scan shows anything that changes the plan'.

He had the scan on the Wednesday and on the Friday, we had gone out on some errands - mobile phone in tow so we could be contacted. We got home after 5 to a message on the landline phone - one that the hospital had never used, previously always favouring the mobile. The message simply stated, ‘it’s Dr Beam [not real name], just to say I called.’ There was no further information, and no number to return the call. And after 5 on a Friday meant his secretary would not be available until Monday.

We spent an agonising weekend, worried that the cancer had advanced to such a stage that the radiation treatment was off the table. This was based on the previous information that the oncologist would ONLY phone if there was a problem.

Den duly presented to the cancer unit at 9 am on the Monday and was told the scan did not show any new problems and treatment would go ahead. The consultant had been phoning to reassure him.

I know what happened here. There are strict rules around confidentiality and leaving a specific message on an answerphone can be problematic, as the doctor does not know who will pick up the message. Inadvertent breaches of this nature can cause real trouble - a relative who does not know about the cancer, for example, discovering it like this.

But if Dr Beam had just thought about - or maybe documented in his notes to remind himself - what he had said to us previously, that he would only phone if there was a problem - he would have realised the distress a vague message could cause. If he had just tried the mobile number when he got no reply on the landline, we would not have had to go to hell and back that weekend.

And there is a new hazard - or saviour - in the mix now, that we didn’t have at the outset of Den's cancer experience: the healthcare record app - in the UK, known as the NHS app. It is now possible to see your results on here, sometimes before anyone calls you with them. This is not consistent yet. There are tales of patients who have discovered bad news on their NHS app at 10 pm on a Saturday night, when there is nobody to clarify things. Results on the app are often in medical jargon, and do not tell you what will be done about them. Digital results like this could help with timescales, and reduce staff workloads, but only if managed correctly and everyone is on the same page about how they will be received.

What can patients do to manage scanxiety?

1. Make sure you have marked on the calendar when a scan is meant to be, so that, if you don’t get an appointment, you can chase it up.

2. When preparing for a test, make sure you have checked the instructions on the appointment letter, about how long to fast for, whether to omit any of your medicines, and so on.

3. Before you leave after your test, make sure you have been told how, and when, you will get the results. Ask for a number for if you haven’t heard anything in that timescale.

4. Make sure the hospital are clear on which phone number you should be contacted on. Tell them if it’s OK to leave a message. Have a personalised answerphone message to allow them to double check it's you who will receive the information.

5. In between, try to keep busy: distraction does help. It doesn’t stop the nighttime waking and worrying, but you might sleep better if you’re busy.

And what can hospitals do to help with scanxiety?

1. Make sure the admin systems for booking routine followup scans are robust.

2. Ensure that the systems to advise patients what preparation to make for tests are clear and fail-safe, to avoid unnecessary cancellation of long-awaited tests.

3. Be quick. Please be quick - with your test result turnaround, and with contacting the patient with them. Of course, the cases that need to be dealt with urgently will always need to take priority and be placed on the ‘urgent report’ pile. But the less urgent ones still need to be actioned in a timely fashion. Too often, clinicians ( and I include myself in this ) simply resign themselves to a long wait for results. But maybe if we all escalate delays beyond, say, 4 weeks, to management, resources might be provided. I know that might be a utopic view but that is what we should be aiming for. Isn’t it? Do audits of how long results are taking to come through and put in actions to reduce excessively long ones.

4. Make sure there is a plan in place in advance for managing the results. And stick to it. Will the consultant see the patient in clinic? Will the nurse specialist phone the patient once the results are through? And tell the patient. Are you expecting the patient to phone to get the information from your secretary? Are you going to send the patient a letter? Or are you going to say’ no news is good news?’ Are you confident enough in the admin systems to rely on the latter? Whatever your plan for imparting the results, make sure the patient understands the possible outcomes and your actions. I'd say this is the single most important way to reduce scanxiety.

5. It’s now increasingly important, when arranging tests for patients, to explain what the result might show, and prepare the patient for what they might see on their healthcare app: ie , 'if it’s normal I will simply annotate,' normal no action', is that Ok for you and do you have access to the app?'. This would be a perfectly good way to do things. But also talking about, if it’s not normal. There are some predictable 'abnormals' with a clear outcome, and you can prepare people in advance for that.

6. In GP land, test results only get released onto the NHS app once they have been seen by a doctor and annotated. So the doctor can annotate. ‘normal, no action’ , or’ requires discussion’ or ‘requires further tests’, and so on. Then the patient is prompted to call for an appointment, or the receptionist phones the patient to make one, if this is needed. This could work in hospital, with the right IT and set up. But too often, the patient is left wondering and never achieves closure.

7. If you decide, because you’re lovely, to give us a quick call to impart good news - thank you so much - but please don’t leave a message that tells us nothing, on a Friday after 5! If we don’t answer, try the other number. And if we still don’t answer, don’t leave a message if you can’t leave full information. Make a note in your records of what you have said to the patient prior to the test - if you said, 'no news is good news', follow that rule.

There is no cure for scanxiety, but these measures, from both sides of the doctor's desk, can keep the symptoms of it to a minimum.

There is potentially a cure for adminnoyance. Efficient systems don't have to cost more.

But for now, we are happy that Den gets to have tests once a year that will - please God - provide the chance for reassurance or at least early intervention. While we wait for results, we are keeping busy, and trying to put it to the back of our minds. To do this, we have a calendar reminder on my phone for when to chase them. And in between, I will say, from time to time. ‘Can I have a look at your NHS app?’ just to check if anything has appeared on there. We are experts in living with uncertainty, and we keep hold of hope amidst the vague unease that, as yet undisclosed, results create.