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.

You can run but you can never hide

“There are no great people in this world, only great challenges which ordinary people rise to meet.” ~William Frederick Halsey, Jr.

There are some events in life that take you on a journey you never expect. When that happens some of us drop off the planet, the rest shout out loud.

I took the first option, hence why it has been been two years since I posted on RoamingRave. Now it’s time to move to phase two and become a self-care ambassador.

I’ve been invited to help create a community where individuals encourage and empower each other to take care of themselves.

WHY ME, WHY NOW

To explain, as a major health issue beset a sibling, it then targeted me. I didn’t see it coming, nor the long road back to recovery.

Sadly my sister didn’t make it. She joins another sibling and our father to succumb to cancer in the past 10 years.

Because of my siblings’ cancer journey I constantly got checked but my diagnosis was very different to theirs. It’s called Neuroendocrine tumours, or NETs for short. This uncommon, some consider rare, cancer develops from hormone producing cells, the symptoms of which mimic lesser conditions like abdominal pain, allergies and fatigue.

Diagnosis is difficult. Carcinoid.org explains it typically takes five to seven years to receive the correct diagnosis because there are many different types of NETs. It doesn’t help that few GPs ever see a patient with NETs over their working lifetime.

In the USA in 2016 there were only 115,000 diagnosed with the condition, far fewer in Australia. And there is no cure.

Thankfully the tumours are often slow-growing, and surgery is an option. So I guess you could say I got lucky. Lucky mine were found, and lucky I was a candidate for surgery.

Like a lot of NET patients oncology wasn’t part of the discussion but when they opened me up from the breastbone to the pubic bone the surgeon found the tumour had spread to my lymph nodes.

That said, there is no “active treatment” for my stage 3b midgut NETs, only “wait and see”. Chemo doesn’t work well on NETs and reserved for those whose stage 4 tumours have spread to the liver, lung or bone. But there is targeted hormone treatment for sufferers of carcinoid syndrome.

So since my surgery in September 2016 I have sat and waited, worked hard on recovering physically, mentally and emotionally and researched the pants off this condition.

Seeking a second opinion, November 2017

Prognosis has improved and patients can live for many years with NETs as a chronic condition. So rest assured, because mine metastasised, I will be checked by an oncologist for at least 5-10 years to ensure there is no recurrence. My “new normal” post-surgery involves six monthly blood and urine tests and an annual nuclear scan.

It has been, and continues to be, a scary ride, made harder by the fact that I look fine. My external scars are covered up and out of sight but the scars on the inside are the ones you can’t hide.

Since being diagnosed I have found great comfort from wonderful NETs organisations such as http://www.unicornfoundation.org.au in Australia and http://www.carcinoid.org in the USA/Canada. Next blog I’ll share my Health Storylines challenge. I hope you will join me.

This post is dedicated to my sister Belinda, who passed away nine months ago. She showed amazing strength of character in the last six months of her life. Her concern for others was astonishing. It never mattered how sick she got, she always wanted to know how everyone else was.