Season 2 Episode 14
Neuro Endocrine Tumors, NETS
In this episode we will discuss NETS, with Lyn Wilson, a firefighter currently living in the UK.
Neuroendocrine Tumours (NETs). Rare cancer that used to be labelled a Carcinoid (“cancer-like”). In years gone by they thought this was 'like a cancer, but wasn’t.' It’s very slow growing and doesn’t show up on normal blood tests etc. So the Tumours ‘hide’ and are often not found for many years. It can take many years for the cancer to move into stage 4. NETs don’t normally respond to chemo or radiotherapy. And they are often treated with nuclear therapy.
In this episode we will discuss NETS, with Lyn Wilson, a firefighter currently living in the UK.
People are misdiagnosed on a regular basis and often spend many years trying to get an eventual diagnosis. Her diagnosis took more than 5 years. She was told she had gastritis, acid reflux, depression, sensitivity to veg.... she was given antidepressants, peppermint tablets, told to eat yogurt, avoid veg, all sorts.
What does it mean to you?
What does it mean to you ... the Nurse Practitioner who shrugged her shoulders when I begged for help? The consultant who prescribed me anti depressants ... the consultant who advised me to drink mint tea, eat yogurt and stay away from vegetables ...?
What does it mean to you, the technician who laughed as he did my scan, again, ... 'that'll do' he said. But was it clear enough?
What does it mean to you... the login GP, the newly posted GP, the 'nearly ready to retire' GP, when faced with a tearful female who is complaining, yet again, of having a sore stomach?
''... she's been told it's mild gastritis and acid reflux for Gods sake, what more can I do!'
What does it mean to you, the person responsible for booking the Octreotide scan, sitting and waiting for three weeks before being asked ...'what's going on?'
What does it mean to you, the person who told them I was away on the honeymoon I cancelled because the consultant advised strongly against the long haul flight?
What does it mean to you, the person who failed to pass in my correct mobile number?
What does it mean to you?
It means nothing.
You sleep at night.
You aren't in pain.
You aren't worrying.
You aren't surrounded by loved ones desperate for some news on the situation.
You aren't worried about your future.
What does it mean to me?
It means 55 months have passed.
It means I face an uncertain future.
It means my cancer has probably spread.
It means my tumour (the one they've found so far) is now almost 2cm.
It means my hopes are fading fast.
It means I may never see my daughter graduate, walk down the aisle or have my first grandchild.
It means I probably won't get to do that PhD I want to.
It means I may never see Sri Lanka (my honeymoon destination)
I may never make my anniversaries (I got married less than 4 weeks ago).
Will I see my 50th birthday?
Will I ever be pain free?
Or will my remaining time be filled with injections, scans, tests and appointments?
So, next time you see a patient, next time someone sits in front of you, begging for help, next time you fill in that referral form, pass on medical information, complete a scan .... next time, remember it may not mean much to you, but it is my life and to me, this is everything. It is all I have.
Lyn - January 2017