It’s always good to have choice. We spend our lives making decisions from regular, often routine day to day (what to wear, what’s for dinner, where to park, should I take a jacket, do I need another pair of shoes…) to bigger decisions that impact our futures selves and those around us: house, career, relationships, study, money. I’m sure you have all had to make these bigger, tougher decisions from time to time. So my question is this: Is choice as good as we’re led to believe? Millions around the world would say yes: the broken, defeated, war ravaged, hungered, powerless masses. So maybe it’s my white middle class privilege that has me questioning the overwhelming options I was given a few months ago.

Sometimes we want someone else to make the tough decisions for us.

Once my scans had been read and were found with No Evidence of Disease (NED) the PMac team had my histo sample reviewed by their path team. This took a week or so, but there was no change to the initial report. I was then handed over to a PMac Oncologist, who stepped me through my 3 options. She kindly, but clearly stated that it would be up to me which option I chose, she could not make the decision for me.

Option 1 – Surveillance

This ‘wait and watch’ or ‘active surveillance’ would involve a few years of 3 monthly (3/12) PET scans and brain MRI’s, which would stretch out to 4-6/12 for the next few years and so on until 5 years was up (for reference, 5 years is when you get your Willy Wonka Golden Ticket). 6/12 skin checks by a skin specialist would also be part of this (actually, skin checks are part of my life forever now).

Option 2 – Adjuvant Nivolumab

Nivolumab (Nivo) is the gold standard treatment for my melanoma (plus a bunch of other cancers) and has been a complete game changer for melanoma patients over the last 5 years. Nivo is an immunotherapy drug given once a month for a year. It basically “takes the brakes off” my immune system (gives it a boost). It comes with a gazillion side effects, some, all or none of which a patient may experience. Nivo would reduce my chance of recurrence by up to about 40% (my chance of recurrence is 50-50) BUT, there’s no evidence to show it works better if you have it as adjuvant therapy (so to reduce risk of recurrence) OR once there’s a melanoma tumour to treat. Hmmm…

Option 3 – Nivo + Clinical Trial

The idea that most people have of clinical trials is that it’s a “get out stakes” type of treatment – there’s nothing left to do, lets get you on a clinical trial. Whilst this is the case sometimes, it’s not quite true for everyone. I was being offered to partake in the mRNA vaccine (cancer vaccine) clinical trial. Being the altruistic person I am, I thought being part of research might be something I’d be interested in, all in the name of science, of course. The downside of the trial was going to involve frequent trips to Melbourne and more testing.

These three options were explained to me a couple of times by the same PMac Onc and she was super patient with my multiple questions during our second meeting. Each option came with positives and negatives and there seemed no clear answer in my opinion. She told me whatever I chose was positive, but I had to go in with a “no regrets” attitude AND I had to make my decision within 3/12 of the surgery (the one I had last week).

I really wanted someone to take the burden of the decision making off me. Some of this came in the form of my PMac surgeon. We had a lengthy phone call one day and he said:

• “Ditch the clinical trial, you’ve got too much going on at home”
• “You’re a good candidate for surveillance due to NED and TILs – regular scans mean we can catch it early and treat it early”

I was already keen for surveillance and this conversation helped steady my thought process – well it did for at least a day or two. During these few weeks, I went between wanting treatment and wanting no treatment, changing my mind back and forth every couple of days. Being such a decisive person, you can imagine how much I started annoying myself!

Rod and I sat down one night and listed the pros and cons of each option – I just needed to clear my head and organise my thoughts on paper. My main concern was side effects, I didn’t (and still don’t) want to lose my energy and enthusiasm due to treatment that I may not need yet, or ever! Inflammatory diseases, thyroid dysfunction, irreversible side effects – I was mourning the loss of my lifestyle; my plans of work and travel, being the self-proclaimed ‘fun’ parent and having capacity to do everything I wanted! As I said to Rod, “it’s not supposed to play out this way.”

The other major factor of course, Rod’s health. Whilst he is well, there’s no predicting the course of his disease or treatment: we can’t both be sick at the same time! This thought really hit me hard. Bloody hell, Hamish can’t have two actively sick parents at once! Jesus. I was starting to lean towards the Nivo.

We had a few days in Daylesford and I only talked about the decision-making process a couple of times, but I was not sleeping; the weight of the decision was really bringing me down. Whilst it was a decision I had to make about myself, the decision would impact those around me, mainly my family.

I had organised to see a local Oncologist because I don’t need to travel to Melbourne every month to have Nivo when I can walk 30m from my office to have it at work. The night before the appointment, I was sitting about 60% in favour of going ahead with the treatment, when Hamish piped in:

“What’s happening tomorrow?” he asked

“Oh we’re going to talk to an oncologist about whether or not to start treatment”, I said.

He looked me dead in the eye and said, “Have the treatment Mum, we don’t muck around with cancer.”

Oh that child is wise beyond his years! I looked over at Rod who gave me a shrug that said, yep, fair enough, and from that moment, I was onboard. Next Thursday I start treatment and this time next year I’ll be done and we’ll be heading overseas for a well-deserved stint of long service leave.

Here’s the link to the patient information sheet about Nivo if you’re interested https://www.eviq.org.au/medical-oncology/skin/melanoma-adjuvant/3635-melanoma-adjuvant-nivolumab-flat-dosing

And if you, God forbid, are ever in the need of an oncologist, I can recommend a gem. She said she likes to combine surveillance AND the Nivo, so it looks like I get both options after all! (all those sleepless nights…)

Addit: Just before uploading this I received a call from the PMac surgical team about last week’s WLE. All good, there were no residual melanoma cells left from the site (good work Dr Tom!). They won’t discharge me, but will liaise with my oncologist and will be my surgical team if/when I require more surgery in the future. All bases covered.

Pics of current sutures FYI – I changed the dressing this week. Yes it’s huge, yes, there’s a big dip in my leg, no I’m not worried about how it looks, yes a few more weeks until sutures are out and I’m back on the bike, yes I’m back at work, yes I was tired after just two days…

Oh, and my Grads bought me flowers – how thoughtful.