Tell us a little about yourself
I’m 46, married with a beautiful 3 year old daughter and another beautiful 16yr old step daughter. I grew up in Manly NSW and like any normal kids spent a lot of time outside. When I was in my early 20’s I moved to the UK for a short 2 years of travel however stayed for 15 years! I built a wonderful career and life but it was missing something, I hadn’t met anyone special. I was planning a move to NY for a change of scenery and to take up another job for a while, it was always a dream to live in the big apple! Like London I love the hustle and bustle of big cities, the life the atmosphere, eclectic people. Unfortunately, my plans never happened because of melanoma!
When and how did you first find out you had melanoma?
My melanoma has been extremely sneaky over the years and very very clever at avoiding detection by specialists in both the UK and Australia! While I was living in London (2010) a small pink spot came up on my cheek, I had no moles so I went to a dermatologist as I thought it didn’t look right, I was told it was likely a cyst and to cut it out would mean I’d have a scar. I immediately said ‘no way’, so I left and didn’t do anything about the ‘cyst’. It actually started to disappear so I thought nothing of it. Almost a year later the cyst was no more than a small pink mark but a small pea size lump had come up under my skin next to my ear. Once again thinking nothing of it but I did get it looked at my a GP – once again told it was a blocked lymph node and not to worry. About 6 months later and by this time my move to NY was well in the planning the lump had grown. Before my move I thought it should be checked again ‘just to be sure’. This was all in the UK so I was away from my family. I was sent to a specialist who said immediately it’s a tumour but 98% chance it will be benign. 3 ‘inconclusive’ biopsies later and it was confirmed that it was in fact cancerous but not to worry it was a very low grade likely saliva gland cancer – the one everyone wants to get if they get cancer apparently. The tumour was successfully removed and it was only then it was confirmed it was a secondary melanoma – primary unknown! Another large surgery to remove further lymph nodes, a PET scan and I was given the ‘all clear’. As a stage 3 patient now I was asked to participate in a clinical trial which I agreed to. Unfortunately I failed at the first hurdle – a CT scan showed 3 liver spots. It was only 6 weeks since a clear PET. A follow up PET showed nothing so a biopsy was done as a ‘belts and braces check’ and that again was clear! All good – back on the road to recovery but I’d been put through the wringer mentally.
At this point I decided to go home to Australia and speak to Melanoma Institute Australia (MIA) – I wasn’t feeling safe where I was. Under their care I continued to have clear PET’s although my CT’s kept showing a few liver spots that never changed so was reported as angiomas. Shortly after I arrived back in Australia I decided to have a skin check and get that process underway. I asked the doctor to look at the small pink spot on my face that he said he’d never seen anything like it. He took a biopsy and sure enough it was amelanotic melanoma insitu. But how could insitu create a secondary… there is still a bit question mark whether this is the actual primary or the real one did spontaneously disappear. Something I will never know the answer to.
The best bit about this story is that just a few weeks after I arrived home I met my now husband. We had a whirlwind romance, married a year later and when I hit the 5 year clear mark of stage 3 we fell pregnant and had a little girl. As any new mum knows the first few months of being a mum is very tiring – and I was in my 40’s but so happy I got in just in time to have my daughter. Shortly after I started to have some symptoms of being unwell but everything could be attributed to have a new baby – tiredness – lack of sleep, a bit of nausea – hormones and lack of sleep, sore back and shoulder – carrying a newborn, lack of sleep. However, a routine scan when she was 4 months old changed my life again. Called straight in to see my wonderful oncologist at MIA and was told I had 4 very large tumours on my liver. You can imagine my surprise to hear it was the liver story again…. Nowhere else but they had certainly taken up residence very comfortably in my liver. A biopsy confirmed it and I was moved to the wonderful Prof Long. Seems my sneaky little pretend angioma’s on my liver had decided they would grow while I was pregnant and my immune system was under loan to my daughter. I’ll never know how they fly dormant and under the radar for so long but they certainly waited until my body was at its most vulnerable to take off.
Tell us about your treatment
I started ipilimumab/nivolumab almost straight away. I was petrified as I had heard about ipilimumab and was so scared of what it could do. I’d also heard of Keytruda and wondered why I wasn’t being offered this wonder drug – it soon made sense that nivo was the same kind of drug. I got through all four ipi/nivo doses, each one a tiny bit harder than the last but never really feeling much except tiredness and a small rash. The 4th one did kick off the stomach pains though but never bad enough to go to hospital. My bloods also showed steady improvement in my liver so I was very keen to be scanned. I’d also heard that vitiligo was the side effect they liked to see because it was a sign of it working – I checked my skin obsessively looking for any signs of lightening – I was pale anyway so it was silly but the day I was going in to have my scan my brother mentioned that he thought my freckles had faded…. I hadn’t told him about this side effect so I was excited that he thought that.
My wonderful nurse called me the day after with my scan results so I could relax over the weekend – I’d had the most amazing response to the treatment and 80% of the cancer had gone! I was over the moon, her words were ‘people that respond like this go on to keep responding and do very well’. I cried hugged everyone around me and cried some more. The 3 months of stress all came out. I finished my treatment a year ago and was given the ‘all clear’. I feel like by the time I finished I was ready to finish and start my life again. Two years was a long time but there is something about the longevity of it that has given me confidence in my health and my future.
What challenges did you and your family and/or friends face after your diagnosis?
I was a new mum, a step mum a daughter and sister and my diagnosis shocked everyone. It had been such wonderful news that a new baby was coming but to be followed by a stage 4 cancer diagnosis was so hard to get our head around. Thankfully my daughter who was only 4 months old was none the wiser and I’m hoping that all it will be to her is a story I tell her one day about the first 2 years of her life. My step daughter was devastated but the fact I remained so well during my treatment made it easier for her to not worry about me. The same for the rest of my family however they knew what the risks were so there was always anxiety. We were lucky to be able to hire a nanny to help with my daughter to allow me to sleep when I needed to and go to my treatment so outside the challenges of the appointments we weren’t faced with other challenges.
Tell us about your involvement with MPA
I always knew about MPA but initially I was very nervous to join. I tried to keep my life as normal as possible but over time I knew it wasn’t and I needed to connect with people that were going through the same thing. Given I was so well through my treatment the hardest struggles for me were in my head. MPA has given me that group that ‘get’s it’…
How has melanoma cancer affected your outlook on life?
From the beginning of my diagnosis 9 years ago it has changed my outlook, different things became important, I moved countries, focused on my family and was kinder to myself.
Do you have a motto or personal mantra?
I am titanium!
I’m happiest when…
I am around family and friends, I’m a real people person so that’s what makes me smile the most!