The results of the clinical trial I’m on for inflammatory breast cancer have been immense - Melanie O’Neill

Melanie O’Neill, Christie patient

Melanie O'Neill

Five and a half years ago, I began writing about my life with cancer.  With a following quickly growing in my local town, I began writing for my local paper’s website more and more regularly at www.warringtonguardian.co.uk

I was diagnosed with inflammatory breast cancer in May 2011 at Wigan hospital as I’d been previously misdiagnosed nine times elsewhere and my kids were only four and five then.

My symptoms were a red itchy patch of skin on my left breast, which was growing daily.  I had a constant dull ache there and I went up three bra cup sizes as it swelled rapidly. I knew something was wrong and over the last few months, having been told there was nothing wrong I started to google the symptoms myself.

One by one I was ticking off the ever increasing symptoms of inflammatory breast cancer, as they continued to get worse.  Thickening of the skin, inverted nipple, redness and swelling. It goes misdiagnosed and often found when it’s too late.  It does not show up on mammograms or ultrasound scans.

I was given a biopsy to get some answers, but that involved a three week wait. With all the symptoms being ticked off slowly but surely, the panic started to kick in.

When I went back to Wigan for the results they were inconclusive. So I was sent for an ultra sound and there the doctor diagnosed me with inflammatory breast cancer as it had now spread to my lymph nodes and the scan was able to show the spread.

My first emotion was relief. Someone was finally listening to me.  I wasn’t going mad. I wasn’t a hypochondriac. I had a name for what I had, but with only the knowledge of this “untreatable”, “when it’s found it’s too late” cancer that I had found from the internet.

Only days later I met Dr Gregory Wilson, who would then go on to be my oncologist for the foreseeable future.  He looked sincerely gutted when I told him how I had been let down previously. I started on chemotherapy just days later.

From the moment I met Dr Greg Wilson I knew he had compassion, something doctors aren’t trained in and very few see the importance of. After meeting my surgeon first, I was left wearing blood soaked bandages across my biopsied chest when I met my oncologist. When Greg pulled his chair up and took hold of both my hands, I felt cared for. I will never forget that moment and how precious that was to me when engulfed in fear and the increasingly suffocating, fretful emotions at that time.

Only a few weeks later I was at his clinic for my regular three-weekly check-ups where I was introduced to Julie Sexton, a complementary therapist for The Christie. Greg had arranged for her to set up a room in his clinic every Thursday, to help his patients in any way, to feel more relaxed.  And so I became friends with Julie who would massage my back or give reflexology whilst often drying my tears and putting the world to rights. It’s evident how much he cares for the wellbeing of his patients. I was also assigned a direct contact with Clare Gaskill my wonderful Macmillan nurse who is always there to help out when anything needs sorting.

Greg always had something else to offer whenever a chemo stopped working. In the midst of all this I took myself off to Brazil to see a spiritual healer, and a year later to a raw food institute to try and get better. I even took a second opinion from Dr Stephen Johnson from The Royal Marsden hospital in London. I always had faith in Dr Wilson but circumstance took me to London and instilled even more faith in him when Dr Johnson told me he would have made the exact same decisions as Dr Wilson.

Dr Wilson never stopped me from going or gave his opinion, and for that I will always be grateful along with, somehow, always having a plan for me. He even went above and beyond his call of duty when I asked him for his opinion on Kadcyla (chemotherapy) as I’d been asked by Roche, the manufacturers of many chemotherapies including Kadcyla, to do a presentation in Switzerland.  Even though he was away on holiday, he still helped me and my presentation awarding me a standing ovation.

Almost six years on from my initial diagnosis, I have now begun a clinical trial which has made an incredible improvement after just 1 dose.  It continues to work with minimal side effects for me, and I’m only on my third cycle. Oh I could write a book!  The clinical trial doctors, I have been assigned my own nurse, the ward… all amazing, including the results. Bonus!

With only a few months off here and there, I’ve been on chemotherapy almost continually for nearly six years, had two operations, light therapy, radiotherapy, and overall spent a ridiculous amount of money keeping well, taking supplements, homeopathy, massages etc. etc.  And then on top of all this

I was involved in a serious car accident where I suffered two brain bleeds and had to be taken by air ambulance to a brain trauma unit.

So I’ve had dealings with the psycho oncology team too. But the big man in the sky is not ready for me yet. Still holding on to hope. Still having faith that my cure is out there. I have every cell in my body believing in this clinical trial and so far…. it’s working. My kids don’t remember a time when I didn’t have cancer. I pray they’ll remember the day the doctors announce I’m in remission or ‘no evidence of disease’ as it’s known with inflammatory breast cancer. To be honest, I don’t care what it’s called as long as they can’t find it anymore.

To find out more about Clinical Trials at The Christie please visit www.christie.nhs.uk/professionals/research/clinical-trials or email Information.ClinicalTrials@christie.nhs.uk or speak to your consultant.