Cancer diagnosis relief
Feeling euphoric after being diagnosed with lung cancer is probably not your average person’s reaction, but Deborah Burnside is hardly your average person.
Actor, author, business owner, sportsperson and event coordinator, Deborah can now tentatively add lung cancer survivor to the list.
“I’m in my first year post surgery — the lymph nodes taken were clear — but I’m on a regular review for five years before I can be officially declared cancer free,” she says.
Deborah found out after a CT scan in October last year she had a 1cm nodule in her lung. After “pestering” her specialist, she was told it was cancer
“Really I knew as soon as I had the PET scan though.”
With the attention to detail of a published author, Deborah had been sending her symptoms in writing to physicians since 2015.
“I had all the classic lung cancer symptoms — breathlessness, night sweats, a cough and chest pain — at the time everybody had a post winter cough, the night sweats were dismissed as simply my age and the breathlessness was intermittent.”
Deborah didn’t let it rest and says she felt deep down something was very wrong.
“I’m a get on with it sort of person — it was easy for these things to be brushed off — I wasn’t convinced though.”
She says the diagnosis was a huge relief to find out she was right.
“I’d suffered a lot of severe symptoms from endometriosis for a long time in the past and been incorrectly diagnosed on that issue, so had gone through quite a bit to get to the stage of finally having the tumour in my lung confirmed.”
Deborah says her diagnosis was an easier pill to swallow for her than her family.
“Because I’d been living with a nagging suspicion for so long, I was fine — it took a little longer for the rest of the family to catch up and process that it was cancer — I let all my immediate family know all together.”
■ Information and key facts about NET cancers in NZ
Neuroendocrine tumours are tumours that grow inside the cells that generate hormones. There are multiple places neuroendocrine tumours can grow including the glands, pancreas, lungs, intestines and stomach. Not all neuroendocrine tumours are cancerous, but some are. Cancerous tumours may spread cells throughout the rest of the body. Benign tumours don’t
The diagnosis of a neuroendocrine tumour, or NETS, was the best type of one of the worst kinds of cancer in New Zealand to have.
“I was an excellent surgical candidate and had a right middle lobectomy at Mercy in Auckland. I am very grateful for health insurance as it was heading to Christmas and public surgical units were closing for the holiday period and the young doctors were striking.”
Because of the kind of tumour it was — primary and encapsulated — move. The most common NET symptoms are abdominal pain, flushing, diarrhoea, wheezing, heart palpitations, skin rashes and heart burn. As the symptoms mimic other more common conditions NETs are often misdiagnosed. The diagnosis is only made once they have spread (metastasised) to other organs. From onset of symptoms to correct diagnosis is five to seven years at which time the cancers have usually metastasised.
Deborah has not had chemotherapy or radiation.
“If the tumour had been larger or my lung function worse, things could have been very different for me. That’s why the Lung Cancer Foundation of NZ is currently presenting to government about declaring lung cancer a national health emergency.”
Deborah’s decision to be part is part of the INCA (International Neuroendocrine Cancer Alliance), with members from 26 different countries working together on an annual global awareness campaign, is personal.
“Because I know, right now, out in our community there is somebody just like me who is going to die because their disease will not be diagnosed early enough. I had every clinical symptom of lung cancer and each of them was brushed off and ignored. Additionally for NETS sufferers many of the treatments are not funded. It was only recently that I even found out about the NETS support in NZ through the Unicorn Foundation.”
Friday, November 10 is World NETs Awareness Day — collection buckets and promotional cups of coffee will be available at Dropshot Kaffee, Angkor Wat and Cafe´ and Larder No.5.
“If any other cafes would like to participate all they have to do is get in touch or donations can be made directly to the Unicorn Foundation www.unicornfoundation.org.nz/. Ultimately we know when our own bodies aren’t right, so don’t give up, keep searching for answers. It’s probably not going to be cancer, but better to know earlier rather than later if it is.”
Deborah Burnside delivers coffee cups to Dropshot Kaffee owner Karen Kriese-Wise, for the upcoming NETs Awareness campaign.