Image: Yvonne with her sons and husband on a skiing trip. Credit: Yvonne Diaz
I first went to my GP because I’d been coughing quite a lot. I assumed it was caused by seasonal allergies, and even when I really started with the coughing, it took me a couple of months before I did call the doctor.
By then, I was finding it hard to speak and I had pressure in my chest. My GP sent me for an x-ray to be safe. I am so lucky she did, because it turns out I had lung cancer.
After the diagnosis, I had a biopsy to see what type of lung cancer it was, but while I waited for the results, I became so ill that I couldn’t even get out of bed. When the results arrived, my consultant called to tell me it was ‘good news’: I had an ALK gene mutation, which meant I was highly treatable. I started treatment three days later, and within a fortnight I was well enough to join my family for dinner again. Now I’m able to do much of what I did prior to my diagnosis.
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“Being matched to the right treatment is crucial”
The treatment I’m on, a targeted therapy called brigatinib, is easy to take, has only minor side effects for me and, most importantly, it’s working.
But had I not received biomarker testing, my cancer story could have been quite different.
Many lung cancer patients like me get diagnosed at stage 4 when we are very unwell and the cancer is advanced. This makes being matched to the right treatment crucial. It also gives us the most precious gift of all – time. For me, that’s all about more time and memories with my family and friends.
My diagnosis inspired me to become more involved in advocating for patients, particularly in research activism and funding. My background is corporate communications and I’ve used these skills to drive action.
Image: Yvonne with her sons. Credit: Yvonne Diaz.
“Misperceptions can delay diagnosis”
Too often there is delayed diagnosis with lung cancer. I know people who have horrific diagnosis stories - they presented at the doctor for a year and were treated for chest or throat infections.
One of the reasons for this is that I don’t think the public, or even many GPs, realise that people who don’t smoke can get lung cancer. The truth is that it doesn't matter how you wound up with lung cancer. You deserve the best treatment, care and empathy. But the problem is that diagnosis can come very late because of misperceptions of who is at risk.
“Everyone has a right to effective treatments”
Then there is the need for biomarker testing. When I first joined ALK-positive cancer support groups, I heard stories from people who were put on the wrong treatments and became more unwell – all because they didn't know they had a targetable biomarker.
In 2022, I became involved with a couple of charities to help advocate for biomarker testing to become the standard of care in diagnosis assessments.
The following year, I co-founded the charity Oncogene Cancer Research, which I now chair. We work to improve outcomes in lung cancer globally, establishing relationships and collaborations with organisations such as The Institute of Cancer Research, decision makers and various patient groups.
Everyone has a right to effective treatments - though when it comes to targeted or precision drugs, cost can be an issue. But the wrong treatments also cost money. And precision medicines are cost-effective because we know they are more likely to work.
“We’re still not where we need to be”
People with an ALK mutation tend to be quite young at diagnosis - often they may be in their family planning years or at the peak of their career, so it’s important to get people treated and back to their normal lives.
We are lucky to be offered these targeted treatments but we’re still not where we need to be.
For someone like me with a positive ALK mutation there are options – and my oncologist was right when he said I was ‘lucky’, meaning that ALK-positive patients have the best survival rates, but that translates into just under seven years - and I’m sorry, that’s not enough.
I was 53 when I was diagnosed and my grandmother lived to 94. I expected to live a long life. When you meet someone who was diagnosed in their 20s, you can’t imagine being told that seven years is good enough.
Image: Yvonne with Jan Clark, co-founder of Oncogene Cancer Research, during a visit to the ICR. Credit: Yvonne Diaz.
“What happens next is a big question mark”
I might have a good couple of years with the targeted treatment I’m taking, but what happens next is a big question mark. It’s hard to live every day with the knowledge that if you're lucky, you might have something that is treatable when the cancer becomes resistant to the drug you’re taking.
Targeted treatments for ALK-positive patients inhibit the cancer at a cellular level, but not 100% perfectly.
There are what are called ‘areas of persistence’ - little cells which are not inhibited – essentially, they are causing trouble.
They're out there trying to find another way to continue to thrive and will eventually cause another mutation. This is why these drugs only work for so long, because resistance is built. When your cancer progresses, if you're lucky there might be a treatment for that extra mutation - and this is what the ICR is working on.
If you're lucky enough to have another known biomarker or mutation, you can still get further treatment, but there's no guarantee and many people don't have that opportunity.
The truth is too many people are not getting anywhere near their seven years. For those that do, we still want more time. That’s the hope and the role of research.
It is only by addressing all types of cancer, that we can hope to defeat this disease. Your support for our work into hard-to-treat cancers will help us continue to make more discoveries, find more cures, and save more lives.
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