KAY Curtin’s melanoma story began when her youngest child was just six months old.
Kay, her husband Liam, their daughters Tara and Niamh and new baby son Bill were living in London when Kay attended an ante-natal check-up with her baby and mentioned to her GP that a mole on her back had been itching.
It was 2004, and Kay was 33. She was blissfully ignorant of the 14-year journey she was about to embark on.
“It had been bothering me for a couple of months,” Kay says over coffee in Cork city. “But I kept thinking it was just my bra strap; my husband had looked at it for me, and it didn’t look like anything.”
After attending a skin lesion clinic in London, Kay had the mole removed and went back two weeks later to have her stitches out. She was so confident that everything was normal that she attended the clinic alone with her baby in a buggy. There, she was told she had melanoma.
“I said to the doctor, ‘Are you telling me I have cancer?’ and he said ‘Yes’. It took a while to take in: people describe it as being punched in the stomach or hit by a train and it really is that dramatic. I went to pieces.”
Melanoma is the most fatal form of skin cancer, claiming about 160 lives in Ireland each year, according to the Irish Cancer Society. Melanoma affects the body’s melanocytes, pigment-carrying cells most often found in the skin.
Over-exposure to the sun’s harmful UV rays is one of the single biggest risk-factors for melanoma, and the Irish Cancer Society’s annual SunSmart campaign attempts to raise awareness of the dangers and promote sensible attitudes to sun exposure.
But many Irish people are still not aware of the extent of the danger melanoma poses, Kay believes. Melanoma is not just skin deep.
“Anything over 1mm is not good news,” Kay says. “Once it gets down into the fat layer, the lymph system, the blood vessels pick it up and can carry it anywhere in your body.
“There’s a lot of misunderstanding about melanoma; people just assumed that I’d just had a mole taken off and that it was no big deal, but I understood very clearly what the potential outcomes could be.”
Kay was initially told that her melanoma had been 4mm deep, although this would later be revised downwards to 2.7mm. Support and accurate information was few and far between, Kay found.
“At that stage there wasn’t even Google, it was Ask Jeeves, so I asked Jeeves and spent the weekend distraught,” she says.
Following a further surgery, Kay was put on a two-year clinical trial of an adjuvant, a medicine designed to boost the immune system and stop her cancer reappearing. She had been told there was a 35% chance of it recurring, but she hoped to improve her odds with the new medicine.
But in the meantime, the ordeal had taken its toll, and Kay and Liam moved their young family back to Ireland, building a house just across the Tipperary border from Mitchelstown, close to where Kay herself grew up. Their kids settled in well in school in Mitchelstown, and Kay flew to London monthly for her clinical trial injections. Until, on one visit, they abruptly stopped: Kay was told the medicine had been found to be ineffective. It was yet another blow, but by no means the final one.
Years passed, and Kay attended Cork University Hospital annually for mole-mapping and scans, but eventually, she was discharged; all seemed to be in order, and she was in excellent health, having taken up running.
But in 2015, disaster struck. In hindsight, Kay knew there were warning signs: An apparent running injury to her hip refused to clear up, there were chest infections and weight loss.
“I ended up in the Mercy Hospital one Tuesday evening in incredible abdominal pain,” Kay recalls. “But still I didn’t put two and two together, even when they were asking me about my history of melanoma.”
A scan revealed that Kay had numerous tumours in her internal organs. The melanoma had returned with a vengeance.
“I knew the news was serious when they asked for my husband to be with me,” she says. “When I got into the room, I said, ‘Where is it?’ They told me they couldn’t do anything for me because it was quite extensive. There were many, many tumours.”
The melanoma had returned with a vengeance, a liver biopsy revealed; Kay was told she had Stage 4 Melanoma. Then she was told there was hope: a new drug known as a BRAF inhibitor was suitable for people with a certain gene mutation, and Kay was eligible. She responded very well to the treatment and her tumours shrank.
“The tablets started to work immediately,” Kay says. “I’ve been on them three and a half years now, and they’re still working. I’m in a small group of people who are very lucky. A lot of people respond well to it initially, but it can come back with a vengeance.”
It’s an amazing breakthrough, but it’s not all plain sailing; Kay has experienced side effects, and the expensive drug has only recently been approved for payment by the HSE. Until then, Kay was granted the drug by its manufacturer, Novartis, on compassionate grounds.
It’s not a cure and Kay will have to continue to take her medication, under supervision by her care team at CUH, indefinitely.
“It’s not curative. I can’t stop taking this. I could get a bad scan at any stage and it’s brain metastases that are the big problem. The majority of melanoma patients will develop brain tumours which is not a pleasant thought. I could still get side effects. You never know.”
In the meantime, Kay has become an active advocate for melanoma patients through her work with Melanoma Support Ireland and the Europe-wide Melanoma Patient Network.
“I really like the scientific side of it,” Kays says. “I love going to conferences and hearing new information. On a European level, I’ve met a lot of melanoma patient advocates.
“People are very frustrated about the misunderstandings about the disease and later stage patients can need a lot of both emotional and practical support.”
It was through her European connections that Kay met the President of the Antwerp Skydiving Club, a fellow Stage 4 Melanoma sufferer. Now, she’s set to take a dive herself: she’s signed up for a 12,000ft skydive over Antwerp Harbour in aid of the charity Breakthrough Cancer Research, on August 10.
After all Kay has been through, jumping out of an airplane at 12,000ft is nothing compared to her battle with melanoma.
“I’m anxious and apprehensive, but a friend of mine said: ‘Kay, if you get afraid, just remind yourself of what it was like to sit in the waiting room waiting for the oncologist to call your name for your scan results.’ There’s nothing scarier than that.”
Kay’s charity fundraising page: https://give.everydayhero.com/ie/jump-for-melanoma-research
For more on Breakthrough Cancer Research See Facebook: https://www.facebook.com/BreakthroughCancerResearch | Twitter: @BreakthroCancer | Website: http://www.breakthroughcancerresearch.ie
Also see ‘Melanoma Support Ireland’ group (https://melanomasupportireland.com/)
Or see the Irish Cancer Society website at www.cancer.ie
SYMPTOMS OF MELANOMA
The main signs may include one or more of the following:
A mole that suddenly gets bigger or you find a new one on your skin.
The mole has developed a ragged or uneven outline.
The mole has a mixture of different shades of brown, black or other colours through it.
The mole is bigger than the blunt end of a pencil.
The mole looks red or inflamed around the edges.
The mole is bleeding, oozing or crusting.
The mole starts to feel different, for example, slightly itchy or painful.
If you have any of the above signs, get them checked out by your doctor as soon as possible. He or she will examine you and decide what to do.
Melanoma has a very good chance of being cured if diagnosed and treated early.
Remember when checking a mole, look for the ABCDE:
A = asymmetrical shape ( one half unlike the other)
B = irregular border
C = is for changes in colour
D = is for diameter (size)
E = is for evolving (a change over time)
This information is from www.cancer.ie