Change won’t wait for some other time

To live is the rarest thing in the world. Most people exist, that is all.— Oscar Wilde

Many NETs patients are frustrated by living life in the slow lane when it comes to getting diagnosis/treatment

It’s been just over two years since discovering I was among 10,000 Australians diagnosed with Neuroendocrine Tumours (NETs).

On the eve of NET Cancer Day 2018 it is time to reflect on this complex and misunderstood chronic condition.

In the past year many high-profile people have been diagnosed and even passed away from this increasingly “common” cancer, including Aretha Franklin.

Yet NETs are still misrepresented in the media and among the medical fraternity, including an embarrassing segment by Dr Oz misstating Aretha died of the deadlier form of pancreatic cancer. Luckily ABC’s Detroit station WXYZ got the story right, but LACNETs explained it best.

It seems obvious that help is needed to raise awareness of the rising rate of NETs not only abroad but especially in Australia. Specifically the issue which needs to be taken up is to remove NETs off the “rare cancer” list so that it can be better funded and researched.

NETRF.org study

In an except from a US study, this statement particularly resonates:

Making the case for increased attention to NETs

“I think the most important thing this paper does is help us articulate the size and scale of the NET problem to help us position and articulate how important this is on a population level,” –co-author Dan Halperin, MD, MD Anderson Cancer Center, who is also a NETRF-funded researcher

Further there are few support programs in Australia for people diagnosed with NETs. After my surgery to remove the tumour(s) I was sent on my way with little understanding of what to expect next (other than six monthly blood and urine tests and an annual nuclear scan). Treatment was “active surveillance/watchful waiting”. Given we are conditioned to take the fight up to cancer with “chemo”, waiting for it to return seemed inhumane and negligent. If only treatment had been better clarified. How would NET patients know these tumours don’t respond well to chemo or radiation and that other “big gun approaches” like targeted therapy are used only as a last-line defence. 

This poor approach to patient education perhaps is due to the fact there are few NETs specialist hospitals worldwide. Australia has ONE centre of excellence for NETs, the Peter Mac in Melbourne, though Sydney’s Royal North Shore Hospital is recognised as a NETs specialist centre, due to the sheer volume of NETs patients it sees.

As a NETs patient if you aren’t seen by a NETs specialist hospital from the start (because you live in a different region, state or rural area), you are not advised of such centres existing.

It took six months post-surgery to discover there was a NETs-specialist hospital in my state. Even so I was not encouraged to transfer as “watchful waiting for non-functional NETs was all I needed”. Within a year I developed suspected Carcinoid Heart Disease, suggesting my NETs were functional. Sadly I wasn’t aware of European Guidelines which Australia follows that suggest all NETs patients should be seen by a NETs specialist team in a NETs specialist centre. Statistics show that the average oncologist rarely sees a NET patient in their working lifetime. Yet this cancer is on the rise (7 out of every 100,000 worldwide).

There is ONE organisation in Australia supporting this cancer: The Unicorn Foundation, which states there are 1800 new cases diagnosed each year. It says there are 10,000 known cases in Australia. That should send alarm bells ringing among a population of just 24 million given the USA reports just over 100,000 cases among its 325+ million residents. Why is NETs so prevalent here? 

As a Health Care Ambassador for Health Storylines, it is important to be part of the movement to raise awareness for this complex disease that gains little recognition or understanding among GPs and specialists. Unfortunately most NETs patients’ diagnosis can take many years because: If you don’t suspect it, you can’t detect it.

I hope support, research and awareness for this condition can be improved with every NET Cancer Day.

In the meantime, NETs patients must continue to be their own health advocate. In the words of Barack Obama: Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. You don’t need a dire diagnosis to act now. If you’d like to join me in living a healthier life, click on this link to get started.

PS: If you know anyone diagnosed with NETs who would like to tell their story and inspire others with the condition, please contact linda@selfcarecatalysts.com

The author has used Health Storylines since being diagnosed with neuroendocrine tumours in 2016. After more than a year documenting her health via the app, she has become a Self-Care Ambassador as part of a pilot to encourage others to track their health.