Tuesday 6 December 2016

'I didn't think I'd see 40, I'm looking forward to 50'

Despite six years of chemotherapy, radiation, and clinical trials, Elaine Kelly says she's living well, while living with cancer

Arlene Harris

Published 04/10/2016 | 02:30

Elaine Kelly, 40, was diagnosed with cancer in her neck and then her brain after already receiving treatment for breast cancer. Photo: Frank McGrath
Elaine Kelly, 40, was diagnosed with cancer in her neck and then her brain after already receiving treatment for breast cancer. Photo: Frank McGrath

Every year around 2,800 women in Ireland are diagnosed with breast cancer and while survival rates are high, around 30pc go on to develop secondary or metastatic cancer.

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This is the most advanced stage of breast cancer and at any one time there are between 1,500 and 2,000 women living with the incurable disease in this country. A report from the Irish Cancer Society (ICS) entitled A Story Half Told, revealed that 95pc of women believe that all breast cancer can be cured if caught early - sadly this is not always the case, but the ICS would like to raise awareness of the fact that, thanks to advances in medicine, many people are living with cancer for years.

Elaine Kelly discovered a lump in her breast in 2011, and while she wasted no time in seeking medical help, it was quickly discovered that she had an advanced cancer of which there was no cure.

"One evening I was getting changed when I noticed a large swelling on my right breast," says Elaine, who worked as a clinical psychologist. "It was red and inflamed with an unusual puckering of the skin. I initially assumed it was the result of a recent fall, but still felt a little uneasy about it so saw my GP.

"A breast cancer survivor herself, my doctor immediately referred me to a breast clinic. I was just 34 at the time, so not considered a high risk and the soonest appointment was six weeks away. But I decided to go privately - and had a mammogram and biopsy done a few days later.

"I knew deep down that something wasn't right and after the tests was told that I had a large tumour. It was inflammatory breast cancer (IBC) - an Invasive Ductal Carcinoma - stage IIIB."

This type of cancer spreads very quickly so it was imperative for Dubliner Elaine to begin treatment as soon as possible. Treatment was initially successful, however it wasn't long before cancer reared its ugly head for a second time.

"Often women who are diagnosed with IBC discover that it has already spread to other organs, but I was one of the lucky ones as it was only in my breast and lymph nodes," says Elaine.

"The treatment plan was a block of chemotherapy followed by a mastectomy, then another round of chemotherapy and finally a block of radiotherapy.

"The type of breast cancer I have is HER2 positive and ER positive, so I was also put on a wonderful drug called Herceptin for a year.

"To be told you have breast cancer at 34 was probably the most devastating thing that had ever happened to me. So many losses flashed through my mind - from the simplest to the most challenging.

"But I also found a new appreciation for life, and started to see the beauty in everything around me - to really appreciate waking up, standing on my two feet (wearily at times) but thanking God that I was alive," recalls Elaine.

While she got on with her treatment and her life, little did she know that the cancer had returned to another part of her body and this time, it was here to stay.

"Exactly a year later, I was told that a tiny pea-size lump I had found in my neck was cancerous as the breast cancer had spread to the lymph nodes in my neck," she recalls.

"I'd been experiencing pain in my right shoulder and being a tennis player, this was rather annoying so I reported it to my doctor as I had learned not to ignore any symptoms - but nearly didn't mention the lump in my neck for fear that I'd be seen as a drama queen.

"Luckily I did though as while the shoulder X-ray showed up clear, the lump was biopsied as being positive for cancer. And a further PET scan revealed that it had spread into the bone in my right shoulder and also my lower spine.

"Sitting with my brother and mum and hearing the words 'This is not curable - you are living with a life-shortening disease' followed by 'you will never have children' will always stay with me.

"Probably the hardest thing to do after hearing this news was to then share it with the rest of the family and close friends, and watch their devastation and fear become my reality."

Elaine cancelled the reconstructive breast surgery (following her mastectomy the previous year) and despite having returned to work after her initial cancer treatment, knew she wouldn't be able to carry on as a clinical psychologist while living with cancer.

"In reality it probably took me at least a year to adjust to the new diagnosis," she admits. "There were many highs and lows ahead. I had four different regimes of treatments over three years, and while some showed small changes, the biggest was that the pea in my neck had grown to the size of what felt like a golf ball.

"In February 2014 I was asked to take part in a clinical trial run by the Cancer Clinical Research Trust (CCRT) to measure the side effects of a targeted therapy drug called TDM1 (Kadcyla).

"I felt privileged to be suitable for this trial and within months that golf ball not only returned to its original pea size, but disappeared. By June 2015 you could practically have called me an NED - No Evidence of Disease."

Medication allowed Elaine to live her life as normal but while she was granted a new lease of life, tests last year revealed that she also had a tumour in her brain.

"In August 2015 I started to present with some dizzy spells in the middle of the night," she says. "Being on a clinical trial means that you have to report every symptom, so I knew I would have to have a CT scan of my brain - the results of which showed that I had a small lesion in my right frontal lobe.

"I was gutted. I met with a radiotherapy oncologist who specialises in what they call stereotactic radiotherapy, where they beam a ridiculously high dose of radiotherapy into the exact place where the tumour presents and blast it to bits.

"I had the most positive response one could expect. It doesn't get rid of the entire tumour but kills off approximately 95pc of it. Placing my faith in the doctors and God is one of the main reasons I am here today."

Despite all the treatment she has endured over the past six years, and having to live her life with cancer, Elaine celebrated her 40th birthday in June and is now looking ahead to her 50th.

"If anyone asks me about my health, I tell them that I am living well with cancer," she says. "I go to hospital every three weeks for my infusion of Kadcyla, have CT scans every three months, and MRI scans of my brain. I also have other appointments in between so living well with cancer keeps me busy.

"I recently turned 40 - an age I wasn't entirely sure that I would reach when I was initially diagnosed with secondary cancer. I bought a new dress and shoes and celebrated with family and friends by dancing until 2am.

"I have a few more parties planned before the year is out, and what excites me is looking forward to the future and what I might do for my 50th and beyond."

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