I was diagnosed in 2015 – I was in the shed with a friend, having a can of beer. He said to me, ‘Mate, you’d better get that thing looked at,' pointing to my arm. The coincidence of it was that only a couple of weeks earlier, another friend had told me she’d been diagnosed with a metastasised melanoma. I was referred to a metro health service and had surgery. Things went ok from there but there have been a few hiccups along the way. Eighteen months later I was just sitting on the couch with my wife, watching TV, when I felt a lump the size of a cricket ball under my armpit. A PET scan showed tumours in both lungs and one in my spine. I felt lucky here – my oncologist argued against more surgery in my MDM discussion. I went on immunotherapy and was told within a number of weeks that it was working.
Things slip through the cracks with coordination of care. And of course, you’re already in a bit of a state because of the diagnosis, so that extra stress didn’t help.
In contrast, my friend who got diagnosed before me had a really poor experience of care. She was also referred to a metro health service. She told me from day one she, ‘felt like a number, not a person.’ Her MDM elected to give surgery, radiotherapy and chemotherapy. She had terrible trouble with lymphedema. She said to me, ‘I feel like I might as well be dead.’ She went for a second opinion at the health service I was treated at. The oncologist there reviewed her treatment and said, ‘What have they done to you?’ She was put on immunotherapy and her response was almost immediate.
She and I were talking on the phone just the other day and she said, ‘The thing we have to remember is without our treatment, we’d be long gone.’ It’s something to be grateful for. But it’s not without difficulties for patients. I was set up with a local oncologist because I’m regional. After I didn’t hear from them for a couple of weeks, I phoned their clinic. ‘Oh, he’s on annual leave for six weeks.’ So, it was lucky I called. Things slip through the cracks with coordination of care. And of course, you’re already in a bit of a state because of the diagnosis, so that extra stress didn’t help.
He got himself a second opinion in NSW... If that oncologist hadn’t of had a personal relationship with that doctor, then my friend wouldn’t have made it.
Another friend of mine was diagnosed in 2014. He got chemo in Victoria on the border. He was never happy with the treatment, which didn’t work anyway and almost finished him off. The health service told him there was nothing else they could do and for him to get his affairs in order. He was a young bloke in his forties and he wasn’t happy with that. So, he got himself a second opinion in NSW. The oncologist said, ‘I know the doctor running an immunotherapy trial in Sydney. It’s closed but I’ll see if they can get you in.’ Well, that came down to the drug company. Luckily they said yes, and my friend’s still here. Immunotherapy has been a real gamechanger for melanoma, and I’d hope it wouldn’t be this way for patients anymore. If that oncologist hadn’t of had a personal relationship with that doctor, then my friend wouldn’t have made it.
I don’t have a written plan, but I’ll be asking for one. You don’t want it coming down to luck.
I’m still dealing with the side effect of itching. It has a really negative impact on quality of life. I’ve just come off immunotherapy as I’m 'two years’ clear', so to speak. The dermatologist wants to put me on a higher dose of steroids. But that’s got me wondering. Will it impact the good work the immunotherapy has done? Who do I ask? That’s the difficulty post treatment. I think there needs to be some sort of MDM that continues post treatment for patients, so dermatologists can discuss this sort of thing with oncologists. My oncologist looked a bit taken aback when I said, ‘If you’re taking me off immunotherapy, I want a really good post-treatment plan.’ Because otherwise, what if what it’s given me is undone? I don’t have a written plan, but I’ll be asking for one. You don’t want it coming down to luck.