My doctor said I had six months left to live
MY HEALTH EXPERIENCE: SHIRLEY McENTEE:I WAS away on holiday in 2004 when my shoulder started to get very itchy. All I could see was what looked like a little black dot.
I was constantly scratching, but I did not take much notice of it. A few weeks later, I went to the doctor with tonsillitis and happened to mention my itchy shoulder.
Two weeks later, I found myself in surgery having the “dot” taken off my shoulder. I thought that was the end of it until, a week later, my GP rang to say I had a malignant melanoma and would have to go back in for a deeper incision.
Even at this stage, I did not realise the severity of the situation. I genuinely thought that, when it came to skin cancer, you could just get it cut out and it would be fine. My friends and family thought the same.
I had the second surgery and was then sent to a skin specialist in Cork for a central node biopsy to ensure none of my nodes were affected. Everything seemed fine.
During one of my three-monthly check-ups, a lump was found in my neck and the decision was taken to remove my lymph nodes because of my history. After that, I went back to work as a paramedic with the HSE in Limerick and had a check-up every six months and a yearly scan.
I never got around to booking my scan in 2008 and the following year, I kept getting recurrent chest infections. I was constantly on antibiotics and felt really rotten. A chest X-ray showed up a lesion in the lower left lobe of my lung and a biopsy revealed that my skin cancer had spread to my lung.
I did not have lung cancer, I had metastatic malignant melanoma which had spread to my lung.
I was sent to Prof Rajnish Gupta, consultant oncologist at Limerick Regional Hospital, who said I needed a lobectomy as soon as possible. This operation took place in St James’s Hospital in Dublin and was, without a doubt, the worst thing I ever went through.
The surgery took nearly 10 hours. I had been given an epidural for the pain but it had not worked. When I woke up, I felt like I had been run over. It was almost too painful for me to even breathe, but I managed to tell them that I was in pain, that the pain relief was not working.
They put me on a morphine pump and I was totally out of it for the next couple of days, but thankfully free from pain.
In the new year, Prof Gupta put me on an Interferon drug in the hope that it would keep my cancer at bay. It was a horrible, nasty drug with awful side effects. From the end of January to September, I was sick every single day with nausea, headaches and dizziness. To make things even worse, lumps of my hair fell out and I looked like a mangy dog.
As I had bills to pay, I had to get back to work and the only position open to me at the time was to go back on the road in the ambulance.
I was constantly sick and sore, sometimes I was sicker than the patients in my ambulance. Then, I got a bad pain under my ribs in my right side which I initially put down to a side effect of the drugs. The cancer had spread to my adrenal glands and ovaries and I had to have them all taken out to try to stop the cancer from spreading. The Interferon had not worked.
The day before New Year’s Eve 2010, my neck started to get sore and swollen. I had to go back in for a CT scan on New Year’s Day. This time, the cancer had come back in my neck and other ovary, and surgery was no longer an option. I really felt p***ed off at this stage. Radiation brought down the lump in my neck a good bit but another scan showed the cancer was still there.
It was at this point that Prof Gupta mentioned a new drug for malignant melanoma called Ipilimumab. He couldn’t say if the drug would work for me but it was the only option left.
I asked Prof Gupta to tell me what my outlook was if the drug did not work. He said that given the stage I was at, he thought I might possibly have about six months left to live.
I was stunned. I thought he was going to say a year or two: it absolutely knocked me. Six months seemed such a short time.
I started on the Ipilimumab and went back doing a bit of office work for two of my bosses – I was no longer able for the road. Apart from a sick stomach, a constant itch and bad headaches, the drug was an absolute dream.
On May 30th, 2011, I had to go in for a scan. It was four weeks since my last round of medication and I had been feeling a lot better but I was very nervous. Once again, my brother Trevor – who was amazing through my whole illness and came to every single appointment despite being married with two young children himself – came with me while our parents waited at home anxiously for the news.
Prof Gupta’s registrar called us in and told us we should go out and buy the biggest bottle of champagne we could find. He told us the cancer was completely gone, it was as if it had just melted away. There was no trace of cancer anywhere in my body.
I found it very hard to take this news in. My cancer had been wiped out in only a few months. I had my funeral planned out on my iPad, down to the music and who I wanted to carry my coffin. The news had been so bad and all of a sudden, it was so good.
That was last May and, a year later, I am still cancer free. I have to go back every three months for check-ups and my lungs are still really weak but I’m trying my best to build myself up to get back to being fully active again and back on the road full-time.
Every pain or ache is a worry, because this cancer spreads so fast and it can come back anywhere but, with a bit of luck, it will never come back.
The HSE gets a hard time in the media but I can honestly say that through my whole treatment, I had no complaints. I was very fortunate to have such a fantastic consultant and team looking after me.
MALIGNANT MELANOMA: THE FACTS
While the majority of skin cancers are treatable, metastatic melanoma is one of the deadliest forms. Some 1,200 people in Ireland were diagnosed with malignant melanoma in 2008.
Deaths from malignant melanoma increased from 16 a year in 1995-1960, to 113 a year in 2004-2007.
Compared with many other forms of the disease, malignant melanoma strikes those who are relatively young and an average 22 years of life is lost from each melanoma death.
Although Yervoy (Ipilimumab) is the first significant treatment advance for this condition in more than 30 years, Irish patients are currently being denied the therapy. The drug received European marketing authorisation in July 2011, but has been under review for reimbursement by the HSE since then.
In January 2012, the National Cancer Control Programme (NCCP) recommended to the HSE that funding should be made available to provide Yervoy to eligible Irish patients, but this has not yet happened.
Irish clinicians say this delay is having devastating consequences for Irish patients with advanced melanoma and at least 16 patients have been left with no alternative treatment options.
Over the course of a 20-month expanded access programme funded by manufacturers Bristol-Myers Squibb, 93 Irish patients were treated with Yervoy.
In conversation with MICHELLE Mc DONAGH