NETs: Kate’s story

Posted on 23 November, 2017

Every story has a beginning and, at 27 years old, I have only scratched the surface of my own.

This time last year I was living in London, climbing that ever-extending career ladder, travelling to exotic European locations every other weekend and forming life-long friendships with remarkable people. The city of London had swept me off my feet but, just before it could totally steal my heart, someone beat it to the punch.

Just a month after arriving in the UK, my best friend dragged me along to a ‘bring a friend day’ dinner. My friend and I arrived at a tiny apartment bursting at the seams with eligible men. When arranging the dinner, my friend made sure to tell the host I have some pretty intense allergies to gluten and eggs – so I was surprised to find that lasagne was on the menu! I couldn’t eat anything, and the poor chef spent the rest of the evening trying to feed me as much salad as possible. As it turns out, that icebreaker was effective because three weeks later I realised I was head over heels in love with that man. Over the course of the next year, Jack and I hit all our happy relationship milestones and I knew that this incredibly kind, supportive and generous person was the one for me. Whoever said you can’t make friends over salad?

Any teacher will tell you in the first two years working in a new environment you are bound to get every virus known to man, and I was no exception. After losing ten kilograms in just a few weeks, I booked into see the GP. A check up and some tests came back negative, and I was sent on my way with the advice to start carb-loading to maintain my weight. For months I went toe-to-toe with my six-foot tall Kiwi rugby player housemate at the dinner table, as well as scaling back my cardio at the gym and instead focussing on building strength. This new regime seemed to work for a little while and then just like that, another five kilograms disappeared.

When I looked in the mirror I felt repulsed. My ever-shrinking body clearly showed each of my ribs, my hip bones jolted out like they were stretching the skin, my cheeks hollowed and I had no boobs or bum. I no longer looked like myself, and I hated it. All through this time I consistently went to doctors and hassled them to run more tests. Each time I was sent away without answers.

After over a year of living abroad, Jack and I decided it was time for a visit to the homeland. One week before flying home, I went back to the doctor again, who this time stated: ‘There is nothing wrong with you physically, this is a matter of anxiety now and you do not need to see me about it’.

That advice very nearly cost me my life.

When I arrived in my home town of Canberra and saw my Mum’s reaction to seeing me, I knew it was worse than I thought. For a week or so I grappled with whether to go to the doctor while I was home. Then I dropped another two kilograms literally overnight and knew I couldn’t put it off any longer.

After a brief examination, my GP warned me something was seriously wrong. Four days after first presenting at my local GP practice, I was called back into clinic – only to realise I had walked into a never-ending nightmare. I was diagnosed with a very rare, extremely aggressive form of liver cancer known as Hepatocellular Carcinoma (HCC). There was a high risk that my liver could rupture at any moment, I would need major surgery immediately. I remember crying and saying, “I don’t want to die.”

Unbeknownst to me, overnight the images taken from my MRI had circulated the globe and landed on the desks of leading specialists all around the world. It was unanimously agreed, with a 97% probability that this initial surgery would give me three to six months maximum and my only real hope after this would be a liver transplant. Before I left the practice on that awful day, my doctor grabbed my hands, looked me right in the eye and, with great compassion, told me “always remember you are not a statistic”.

With a click of fingers, I became a patient instead of a person. I felt robbed of my identity. Yesterday, an active 26-year-old woman, a valued teacher, a cherished daughter and sister, adored friend and loved partner. Today, a scientific anomaly, an experiment and a ‘once in a career’ case.  My life became dictated by hospital visits, endless testing and medical appointments. On multiple occasions, my specialist team tried to speak with me about my prognosis but I refused to acknowledge it. I became totally focussed on getting through the first surgery and convinced myself that if I survived it, all would be well.

During this time, the doctors pulled aside my mum and told her to start preparing for the worst. I can only imagine how petrifying and gut wrenching that moment must have been. When I look back, her strength of character and unwavering faith in my strength to beat the odds is astounding.

As the news began to cascade through our friendship groups, my support army grew, with countless messages streaming in from friends new and old. My social netball team filmed themselves doing a choreographed dance to ‘Hit Me With Your Best Shot’ in the middle of a London street. Our home away from home quickly became a florist with regular bunches of flowers arriving with precious notes full of well wishes and optimism. The London crew rallied together and made a video from all our favourite places and proceeded to wear their self-designed TEAM KATE t-shirts all over the city. My best friends showed up with boxes full of things to get me through the long hospital stay, and more importantly, they were there. Always. At a time of intense panic, unbelievable stress and utter devastation, it was these gestures that filled me with the conviction that I could get through the oncoming challenges.

On February 25th 2017, two of our country’s top surgeons removed a 1.3kg tumour from my tiny torso.

I have an upside-down T shaped scar that stretches from my sternum to my belly button and then horizontally across the width of my abdomen. The next few weeks were a blur. Jack didn’t leave my side for four days and nights, insisting on sleeping in the ICU armchair next to my bed until I was out of critical condition. Once I was on the ward, my family took it in shifts to sit with me from 7am before I woke up to 10pm when the nursing staff kicked them out. The care I received at Canberra Hospital during this time was outstanding. So many doctors and nurses went well above the call of duty to help me and we should be so proud as a community to have such exceptional and dedicated professionals in our public health care system.

The biopsy results on my tumour took longer than usual to come back because something unexpected happened: by some miracle, my original diagnosis was wrong.. It was the only time I have ever heard my surgeon’s voice sound vulnerable. He said, “you could blow me over with a feather right, now but I just got the call and you do not have HCC”. He told me I had another kind of cancer called Neuroendocrine Tumours or NETs. This was still a serious diagnosis and I continued to face a long battle, but it gave us the most valuable gift of all: time. Unlike previously there were now options for treatment.

Neuroendocrine tumours or NETs is the umbrella term for a group of often slow-growing cancers. It is more common than thyroid, brain, cervical and ovarian cancers and the number of people affected could be similar to those suffering from myeloma, testicular cancer and Hodgkin lymphoma.

So, why has no-one ever heard of it?

A key aspect of NETs is that it is not tied to any particular part of the human anatomy. Neuroendocrine tumours can arise from a cell type naturally present throughout the body. As the tumours grow, they excrete excess hormones that mimic common illnesses including IBS, diarrhea, changes to stool or bladder habits, stomach cramps and bloating, asthma, a persistent cough or hoarseness, facial flushing, a skin rash, menopause, weight loss or gain, anaemia, fatigue, tachycardia (fast heart beat), pain, nausea and, ironically, anxiety. If you have been suffering with any combination of these vague symptoms for years I beg you to go and speak with your doctor about neuroendocrine cancer because, “if you don’t suspect it, you can’t detect it”. If caught in its initial stages, surgery may be curative. This rarely happens and for me, like many others, there is currently no cure and no chance of remission. Yes, there are treatment options and even medicines that can keep us stable and living with cancer for years if effective. Even so, I live in consent fear that one day my own body will betray me to the point of no return. The average patient takes four to seven years to be diagnosed with the disease and it is estimated seven in every 100,000 Australian’s are living with NETs. Currently over 10,000 Australians are living with NET Cancer with the prevalence as a gastro intestinal cancer second only to colorectal cancer. Here is the scariest thing: NETs is a ‘silent cancer’. Awareness of the range of confusing signs and symptoms is lacking in the medical profession and the general public are completely unaware of it.

 We need to band together as a community and start talking – shouting even – about this disease, because the earlier you are diagnosed, the better the chance you have to make a full recovery.

I have experienced a roller-coaster of emotions since being diagnosed with NETs. The recovery from the surgery was painful, time-consuming and exhausting. We have since discovered that the cancer has also damaged my heart and I know that, at some point in the future, I may face open-heart surgery.

We moved to Melbourne so I could get the very best available treatment through the Peter MacCallum Cancer Centre with its world leading oncologists in the field of Neuroendocrine Cancer. I was also connected with the Unicorn Foundation, who have provided me with vital emotional support and invaluable information. This Foundation places patient wellbeing at the centre of their research and I cannot speak highly enough or be more grateful to these people who strive every day for a cure to this disease that sadly and unnecessarily takes the lives of many.

Over the past months, I have gradually gained back my strength and, with a lot of hard work, have clawed back my physical health to a place I am very proud of. I receive a hefty sized injection every three weeks and the treatment can make me feel ill. From the moment I was first diagnosed in that clinic in Canberra, we have been on a journey trying to gain as much knowledge as possible to arm ourselves with an arsenal to fight cancer. Jack and I lay together in bed at night, reading research on the latest breakthroughs in cancer treatments and any alternative approaches that may give us even the slightest advantage in this war.

Together, we have made sacrifice after sacrifice and are in a constant battle weighing up our wants as a young couple versus my health needs. When I think of how much Jack’s life has had to change, how much harder it has become because I am the person he loves, I feel a mixture of extreme guilt and eternal gratitude. Without hesitation, he gave up an exciting life and a successful career in London. He too has missed out on countless events because he was busy caring for me. His steadfast positivity and optimism in the face of adversity is something to be reckoned with. If there is anything in this world that makes me think I can do the impossible and beat an incurable cancer it is the extraordinary, honest love I have for Jack.

We have been waiting months for a PET scan to tell us if my current treatment plan is effective at holding the cancer at bay. I have been improving out of sight, gaining weight and energy and returning to my happy, bubbly and dorky self.

I had convinced myself and my support network that, without a shadow of a doubt, the results were going to show some miraculous recovery. I walked into to the Peter MacCallum Cancer Centre to receive my results, with total confidence and unwavering surety, only to hear the very opposite. My cancer has grown. It has progressed and, therefore, I need a more aggressive and radical treatment plan and will shortly be starting a specialised targeted radiation therapy, called Peptide Receptor Radionuclide Therapy (PRRT). This therapy is considered the gold standard for some NET cancers but I have learned that not everyone has access to it and it is not funded for all Australians. My high hopes inevitably led me to fall hard and far. I was shocked and devastated. When we arrived home from the hospital I had a full-blown tantrum, throwing things and then sitting on the shower floor sobbing hysterically, only drawing breath long enough to yell about how unfair this all was.

When I finally calmed down and stopped acting like a two-year-old, I realised something – something that I can only now see due to the perspective that the experience of cancer so graciously gives you. This next treatment could be a game changer: PRRT is not curative, but for a lot of people it does have excellent outcomes and it may just give me the time we need to find that elusive cure. I have decided to face this next challenge head on, with the greatest optimism and expectation that it will work. Just as treatment begins late this year, Jack and I have decided to run a Triathlon together on December 3rd raising much needed funding for the Unicorn Foundation as they continue pursue a cure to Neuroendocrine Cancers.

I am just one story, one face in a crowd that is waiting hopefully for this breakthrough and to get there we need your help. Whether it is through donating, raising awareness or holding your own fundraising event you can help save lives. You can help save me. A wise friend once told me that united we are stronger then cancer. I truly believe that if we band together, we have every chance of winning this war.

For more information on NET Cancer or to donate to research and support services go to www.unicornfoundation.org.au. To contribute to ‘A Cure for Kate’ as Kate, Jack and their team of Unicorns compete in a triathlon to raise much needed awareness and funding for research into a cure to NETs, visit http://www.unicornfoundation.org.au/my-fundraising/65/the-unicorns