Tuesday 19 November 2019

'I was put on a cancer drug trial... and later discovered it actually made the cancer progress faster' - Irish woman (46)

Kay Curtin with Beano at her home in Burncourt, Cahir, County Tipperary.
Kay Curtin with Beano at her home in Burncourt, Cahir, County Tipperary.

I once heard a story about medical students studying cancer. Before they finish the module, they have one last class where they are told, 'Calm down, you don't have cancer', because by then they're convinced every bump or itch is a symptom of something terminal. I wonder if that's true.

When I was 33, the thought of cancer hadn't even occurred to me. Ignorance was bliss.

But when I brought my infant son to the GP I thought, why not ask him to take a look at my itchy mole - which wasn't serious enough to merit its own GP visit, you understand. He referred me to a lesion clinic.

This was in the UK in 2004, back then, you walked into a clinic with your GP's letter and you waited your turn. It was a busy clinic too, there was a big crowd waiting and my son was getting cranky. I remember thinking, will I bother? Just as my patience ran out, the crowd started moving so I stayed, and when my turn came, the dermatologist asked his questions.

Was I ever sun-burnt as a child? Sure was - there was no sun cream out on the farm in Tipperary in the 1970s.

Had I ever used sunbeds? Sure had - back around the turn of the millennium, you could rent sunbeds to give you that pre-wedding glow, and that's what I had done.

Was there a family history of melanoma? That was a scary one. Maybe ignorance wasn't bliss, and yes, as it happens, my first cousin had been diagnosed with melanoma recently and now this was going beyond scary.

But the dermatologist didn't seem overly alarmed, and he said I would have the mole removed via a normal procedure, and this was done in September 2004.

Two weeks later, I went to back to see the surgeon on a Friday. He said: "Melanoma. Stage 4."

He might have said more. There's another story about people being diagnosed with cancer: it's that patients absorb absolutely nothing after they hear the word 'cancer'. That one is true.

Over the weekend, I called a cancer support group and told them my diagnosis. I heard silence, followed by: "I'm so terribly sorry". I even made the mistake of looking up melanoma online. I know I shouldn't have - everyone knows you shouldn't - but I badly wanted to do something. To act.

By Monday, I was speaking with a more senior surgeon who agreed to see me privately. He explained that I didn't have stage 4, what I had was a mole that had been 4mm in size. I was reprieved! This wasn't the last time communication issues arose, but far from being angry, I was euphoric. I was alive! Another procedure would excise the wider area - and my mole had been regraded to 2.4mm, more excellent news.

Then I would be referred to an oncologist, though initially I didn't understand why. Wasn't the mole gone? It was, but my stage of melanoma had a 35pc chance of recurrence, so I went to the oncologist, and he asked me would I take part in a clinical trial.

I think the average person hears the words 'clinical trial' and thinks: you're not going to use me like a guinea pig! But clinical trials can bring out the best in us. When infants are diagnosed with diseases like leukaemia, the parents are often asked if they are willing to have their child included on a clinical trial. The rate of take-up is enormous, even in cases where parents know a trial won't save their child, or even help them, beyond the increase in medical monitoring they receive. But they still do it because they want to help prevent future parents going through what they are going through.

Short of laying down your own life - which any parent would do in a heartbeat if they could - it's hard to imagine a more altruistic act. It gives you genuine hope for the human race.

But I can't pretend I joined my trial out of altruism. I was desperate, I wanted to live, and if this was doing 'something' and the alternative was doing nothing, sign me up. My only concern was getting onto the right 'arm' of the clinical trial - in other words, the group who actually got the new treatment, as oppose to the control group who just got placebo.

I was lucky - I got the treatment. For two years at various junctures, I received injections, which weren't pleasant. They came with swelling and temperatures, and abruptly they stopped.

The treatment had 'proven ineffective', I was told. I still hoped that it had done something for me, and in the meantime, I was clear of cancer and getting my moles mapped in Cork University Hospital annually.

Ten years later, I hit some speed bumps. My hip locked up after a long run, the subsequent painkillers took away my appetite (or so I thought) and a chest infection over Christmas knocked me for six. This all led to hospital and a CT scan, immediately following which the doctor said it was too early to say anything, but could I and my husband meet him in the morning?

That's when I knew: he confirmed it the following day. Stage 4 cancer. No mistakes this time, and nothing that could be surgically done. Once again, I was referred to an oncologist, and there, I learned that there was some hope of treatment, provided I had a certain mutation of the disease.

I was lucky again - I did have the mutation, and that's why I'm still here today - because I receive a treatment, on compassionate grounds, that keeps me alive. Eight weeks after I left hospital, I climbed Croagh Patrick.

And I kept on researching, looking for anything and everything that could help me - and it was then I found out the truth about the trial I was on a decade ago. It turns out that trial was halted because the drug actually made the cancer progress faster. It made people worse.

That's why even now, after what happened on my own trial, I'm still a strong advocate for clinical trials. That's why I sit as a patient advisor on a Cancer Trials Ireland committee that oversees the design of new trials for patients with melanoma.

That's why on Friday, I will be one of 21 students (most of us patients too) who will start Ireland's first formal Patient Education Programme. Thanks to an organisation called IPPOSI (in partnership with UCD, TCD and HPRA), I will spend the next six months learning about clinical trials, regulatory affairs and 'health technology assessments' (which is how the State decides if it will pay for new treatments - like the one I'm get on compassionate grounds).

This programme will help me to educate patients, and work with doctors, researchers, companies and policy makers to help them understand patient needs from treatment to living beyond cancer.

I'm doing this because I'd like the time I have left to have purpose.

I'm doing this because ignorance is not bliss.

My name is Kay Curtin. I'm 46-years-old.

IPPOSI (Irish Platform for Patient Organisations, Science & Industry) helps Irish patients to become more involved in the development of new health policies, treatments and innovations. Ireland's first Patient Education Programme in Health Innovation, being piloted in 2017 in partnership with University College Dublin, Trinity College Dublin and the Health Products Regulatory Authority, starts on September 22. Find out more at www.ipposi.ie/patientsinvolved

Melanomas can appear anywhere on your body, but the back, legs, arms and face are the most common locations. A good way to tell the difference between a normal mole and a melanoma is to use the ABCD checklist, from the HSE:

  • A stands for asymmetrical - melanomas have two very different halves and are an irregular shape
  • B stands for (irregular) border - unlike a normal mole, melanomas have a notched or ragged border
  • C stands for (two or more) colours - melanomas will be a mix of two or more colours
  • D stands for (large) diameter - unlike most moles, melanomas are larger than 6mm (¼ inch) in diameter.

If you are concerned about one of your moles, see your GP as soon as possible.

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