Connect with us

European Alliance for Personalised Medicine

EAPM: Long time, no see… The journey through a diagnosis

SHARE:

Published

on

We use your sign-up to provide content in ways you've consented to and to improve our understanding of you. You can unsubscribe at any time.

Here at the European Alliance for Personalised Medicine (EAPM) we often flag up the issues of a lack of early diagnosis and equitable treatment opportunities for many patients across the EU. These are patients suffering from any number of different diseases. Obviously, those dealing with various cancers form one of the biggest groups falling into this category, and this is not just when it comes to rare cancers - which is an area in which you might reasonably expect more difficulties. Not enough early diagnosis (often through a lack of screening programmes and guidelines) and a lack of access to the best treatments available in a timely and affordable fashion are issues that have long been with us. But the situation just got markedly worse due to the COVID-19 pandemic, writes EAPM Executive Director Denis Horgan.

Here, we talk to a 58-year-old man who has been diagnosed with tongue and jaw cancer and who is about to undergo treatment. The diagnosis, and then the waiting for a treatment start date, made for a long haul. Denis Horgan is the interviewer. Let’s call our patient ‘Peter X’.

DH: Peter, it’s been reported across various countries that the novel coronavirus situation has had a negative impact on other equally important diseases. Can you shed some light on that, please?

PX: OK, well, many countries have seen a drop-off in people actually making it to very important appointments due to the constraints currently being placed on much of society and, as tends to happen, priorities for citizens change what can look like illogically. Many people seem to think that they shouldn’t be taking up the time of any healthcare workers. They need treatment too, but they “don’t want to be any trouble”.

Meanwhile, some areas have actually suspended chemotherapy treatment altogether on at least a temporary basis for the same reasons, leaving patients with no choice anyway. That’s not the case where I am, as it turns out.

The simple fact is that untreated cancer patients run just as high a risk of dying as vulnerable people catching the Covid-19 virus. It goes beyond cancer to other afflictions, of course, but it’s a good example.

DH: To the nitty gritty… In your case, how long did diagnosis take?

PX: A lot longer than I would have thought if you’d asked me at the start but, exact details aside, my story is, apparently, not so unusual.

It began with my suffering from an earache at the same time as a slightly wobbly tooth. Same side of the face, so every expert down the pub said that they were probably connected and, for once in such circumstances, they were probably right!

So, after trying some earwax remover from the pharmacist - didn’t work - I eventually went to the hospital to have my ears syringed. Two for the price of one! They definitely needed it but it made no difference to the pain.

Next up was a trip to the dentist and we decided, what the hell, and took the tooth out. After a while, and reluctantly prescribed antibiotics from the dentist, it became clear that the cavity left by the tooth wasn’t healing properly. Also, the pain in the ear was still there, so the next stop was the ‘ear, nose and throat’ department of the hospital.

At that point I was told to undergo a couple of scans, one radioactive, and was a few days later referred to a hospital in another city for a biopsy, on the basis that if it turned out to be cancer I would have to be treated there anyway. This was a three-hour trip.

DH: What was the overall time period at this point?

PX: Several weeks, all spent taking various painkillers, which I usually avoid.

DH: So what happened next?

PH: Well, somewhat despondently, and with a friend in tow, I trooped off to a hotel in the city in question and underwent a tongue and jaw biopsy at the relevant hospital. I won’t go into the details, but I do not recommend a tongue biopsy - it was painful and uncomfortable. Not nice at all.

Advertisement

Then, after what was effectively a minor operation, I was advised not to talk for some time while my tongue healed, which many found amusing, of course. Always look on the bright side…

Then, I had to wait for three weeks for the results. Eventually I got the call and went back, on the coach for three-plus hours and to the hotel, to the city hospital. To be told, as I expected by then, that it was cancer.

The talk at that time was of an operation to remove part of my tongue and replace it with a pectoral muscle and to do the same with part of my jaw, replacing that from a rather different part of my anatomy.

But first I would have to have an all-over scan - CAT? - but they couldn’t fit me in for one month. So here am I knowing I have cancer, they know i have cancer, all my friends know I have cancer, and now I have to wait for a month to see where else it may or may not be before they decide on the final treatment.

DH: I can only imagine your frustration.

PX: Yes, and by this time I was on even stronger drugs which interfered with my sleep and also caused constipation. Happy days, not.

Finally, I went back to the hospital for the scan and it was three more weeks until I was called back for the results. At that point, one of the consultants (I’d seen several by then) told me I had to visit various other specialists prior to a final, final, final decision on how to move forward and, given how far away I lived, it made sense to arrange all these quick consultations for one day. That turned out to be possible - but only by waiting another three weeks.

In the meantime, the cancer was certainly not going away, was it? Quite the opposite. And I was getting beyond frustration into anger territory at this point. And almost some tears on a few occasions.

Anyway…Eventually these appointments take place and I stay in a hotel for three nights and finally see the surgeon who, to my disbelief after all this time mucking about, tells me that it’s too late to operate and that I have to skip that bit and go straight to chemo and radiotherapy.

I had all on not to blow my top there and then. There I sit with an advancing cancer that everyone knows about having been shoved from pillar to post to be told it’s now too late for Plan A and we have to jump to Plan B.

DH: Alright. What next?

PX: Cue yet another consultation, then another wait and round-trip and a measurement for a ‘mask’ to keep my head still during radiotherapy. Followed by a start date two weeks down the line. By which point I would have had to move to the city - at huge expense - and live for two months in a hotel in a place where I know no-one while undergoing a horrible combination of chemo and radio.

And that’s where we are. Treatment starts tomorrow, Denis. I’m lonely and frightened, and under great financial stress, trying not to think about the fact that if this had all been done months ago, it would have been done-and-dusted for better or for worse, and I would be back at home right now rather than living out of a suitcase in a hotel in a strange city.

Of course, this would all have been bad enough, anyway. But the Covid-19 outbreak certainly had an impact on staff availability. On the big plus side, at least I’m lucky that they haven’t stopped chemo where I am.

This is literally a matter of life or death for me, as it is for the worst affected Covid patients, although in a different context, of course.

DH: So how do you feel about all this?

PX: Obviously frustrated, a little angry, frightened because it’s going to be dreadful in every respect, and knowing that - according to my consultant - some days I may feel so ill that they’ll keep me in hospital overnight.

Meantime, I’ve already lost loads of weight, am on liquid-based food supplements, as it hurts to eat most solids, and I can’t have a drink for the next two months if ever again!

Thinking positively, now we’re finally on track, I might come out of it cancer free. One can but hope. I’m trying to be positive.

What I will say finally is that, while all of this very serious COVID-19 situation is ongoing, please do not suddenly think that other seriously ill patients can be pushed to one side.

DH: Thank you, Peter.

Very sadly, our interviewee passed away from cancer in July 2020 – we would have so liked him to be able to attend our next conference, EAPM’s 9th EU Presidency conference, under the auspices of the Portuguese EU Presidency. The conference, which takes place on 8 March from 9-16h, is entitled ‘Forward together with innovation: The why, what and how of tackling the implementation gap for health care in the EU Portugese Presidency’. Please find the link to register here and the agenda here.

Share this article:

EU Reporter publishes articles from a variety of outside sources which express a wide range of viewpoints. The positions taken in these articles are not necessarily those of EU Reporter.

Trending