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Trish McKinnon

Tell us a little about yourself

My name is Trish, and I’m 55.  I live in Canberra with my husband, near my two grown-up daughters.  I retired in August from the Department of Foreign Affairs, after a 31-year career which allowed me to live in eight foreign countries and enjoy lots of wonderful travel.

When and how did you first find out you had melanoma?

When I was pregnant with my second daughter, we were on posting in Mauritius.  A pink nodule appeared in the middle of my forehead, just under the hairline.  Eventually, after Caitlin was born, a local plastic surgeon removed it.  The pathology there showed it was a spitz naevus.  Just over 18 months later, we’d moved to my posting in New Delhi, and the nodule grew back again.  The doctor medi-vaced me to Bangkok, “where the histology is reliable”.  The pathology, again, said spitz naevus.  Within another year, we were back in Canberra and the nodule had grown back a little further down my forehead, and the end of the existing scar was a patchy brown colour.  Both sections were removed, and of course the diagnosis was melanoma.  I retrieved the slides from Bangkok, and of course again it was always melanoma.  My younger daughter was just about to have her third birthday.

Tell us about your treatment

In July 1994, the Canberra surgeon removed my entire forehead tissue down to the skull, and replaced it with a graft.  When I asked about improving the appearance later, he told me I wouldn’t have to worry about that, and to enjoy time with my loved ones.  My GP referred me to what was then the Sydney Melanoma Unit, the beginning of a long relationship!

I stayed well until September 2001, when I noticed what I thought was one of my (many) keloid scars had become very itchy.  This was removed and revealed to be a 17mm deep melanoma.  Back to Sydney, to start seeing Professor Thompson.  He did a very wide excision, and ordered a sentinel node biopsy, which was clear.

Again, I was lucky enough to stay well for some time.  I went off to a posting in South Africa, where a small primary was removed from my forearm, and shortly afterwards, another small primary was removed from my face.  I’d been having regular CT scans, and in August 2004 a 1cm tumour showed up in my right lung.  I flew back to Sydney, where the lower lobe of my right lung was removed, after which I returned to Pretoria.

To everyone’s surprise, not least mine, I stayed healthy for years.  In May 2012 a 1cm met was removed from under the left side of my jaw.

My immune system was clearly starting to falter, though, as a regular PET scan in August 2015 showed a met in my right kidney, which Professor Thompson whipped out. And then, in November last year, the PET showed tumours in both lungs, whereupon I moved from surgical to medical oncology at the Melanoma Institute in Sydney, with Dr Alex Menzies.  A CT scan one month later showed tumours in the liver and spleen as well.

I started Keytruda, along with entering a double-blind trial with epacadostat, in December.  I’ve had remarkably few side effects, other than an inflammatory response around my lungs, with numerous lymph nodes popping up, and some shadowing on one lung.  These aren’t affecting my health at all, though, and the tumours are shrinking, which is all I could hope for!

What challenges did you and your family and/or friends face after your diagnosis?

For me, I hardly remember what it’s like to live without cancer, and even the most recent diagnosis didn’t really knock me.  I felt like it offered an opportunity to take control, almost, rather than constantly reacting to attacks.  My daughters have had to deal with it their whole lives, really, but of course it’s more frightening now they’re adults and have an understanding of possible impacts.

My first marriage ended after I had my one-year check following the forehead surgery.  I was then seeing Professor Chris O’Brien at the Melanoma Unit, and we had a long talk about the importance of living well.  I realised then that I couldn’t stay in that marriage, as I was deeply unhappy.

My second husband and I met only a few months before my lung met.  I tried to break up with him then, but he refused to accept that, and we’re still here all these years later!

I believe this situation is more difficult for my loved ones than it is for me, as they feel so powerless.  I believe this because it’s how I saw things when my dad died of melanoma just after his 40th birthday; it was as if he accepted what would happen and was calm and at peace with it, while we weren’t able to share those feelings.

How has melanoma cancer affected your outlook on life?

I’ve always been a positive and optimistic person, but I’ve become even more so now.  I also had to let go of some people in my life because they took energy rather than gave it; I can’t cope with negativity.  I feel incredibly lucky because the experts thought I would be dead 20 years ago, and I just keep on keeping on.  I am very content in my everyday life, and very often find joy in the moment.  I feel grateful for so many things.

Do you have a motto or personal mantra?

I get knocked down, but I get up again (with apologies to Chumbawamba).

I’m happiest when…

I’m with people I love.  And I also love travelling, particularly in Africa.  Our plan for retirement was to travel at least three months of the year.  Because my first scans after beginning Keytruda showed one tumour had grown, we felt we were on hold a bit.  But since the subsequent scans showed everything had shrunk, we are making the most of retirement.  I’m spending a lot of time doing exercise (twice-daily walks, twice-weekly lap swimming, twice-weekly gym sessions, and weekly yoga), and we’re planning trips.  I’m off to Fiji soon with my daughters, then to Tasmania with my husband.  And we’re next planning Tokyo and the US later in the year, and tentatively planning (with crossed fingers) travel to the UK early next year, and Africa again later in winter.

Trish provided her personal story to MPA in June 2017.

 

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