I’m a 43 year old woman who loves gardening, being outdoors, fishing and spending time with my family and friends. My 3 kids are aged 10, 14 and 18. I was previously active, bubbly, always laughing, very busy and did a lot of disability advocacy. After 2 years of being so ill that I was mostly bedridden and constantly fobbed off by medical staff as “just thin and anxious”. After viewing a news story on neuroendocrine cancer and following up the symptoms with my GP, I was finally diagnosed with small intestine neuroendocrine cancer. This is my story.
I woke up one day in August 2021 and just felt really off. Symptoms progressed and I became mostly bedridden for almost 2 years before I was taken seriously and diagnosed in May 2023. My main symptoms were extreme fatigue, wheezing and shortness of breath, a rash on my chest and neck, my heart rate didn’t feel “right” and I would have episodes of low blood pressure, tremors, collapse and palpitations/tachycardia. I also had no appetite and I lost 15% of my body weight quite rapidly at the beginning. I did not have any bowel symptoms besides occasional IBS pain which I’ve had my whole life so didn’t think it was connected. I spent almost 2 years going to doctors, hospitals and private specialists. I had 8-10 ambulance trips to emergency departments and the general consensus was “it’s just anxiety”. Doctors kept telling me, for almost 2 years, that it was all in my head, when it was actually cancer! I was even put in the short stay psych unit after a trip to emergency after I had collapsed at home and threatened with admission to the psych ward. My blood pressure was 90/45, I had extreme tremors and I could not bear weight on my legs by this point. I was constantly ridiculed and told there was nothing wrong. One specialist even said, “you have post viral fatigue, go home, have a cuppa in your garden and be thankful you don’t have cancer”. That was around the halfway point, and I lost hope after that appointment, I became extremely depressed, isolated and just really had no hope I would ever recover. I knew that something was seriously wrong with me. I slipped slowly out of my own life. I didn’t see anyone for 2 years, besides immediate family. I could barely sit up or shower, could not drive or look after my children, I could not get them to school or leave the house besides going to appointments. Friends became more distant as my illness dragged on, some friends just disappeared, it was extremely isolating and heart-breaking. A couple of good friends checked in with me frequently, sending pics of themselves, scenery, memes and funny pics of their kids and pets so I still felt connected to them and the outside world. I am so thankful these two stuck around.
One Dr did a Chromogranin A blood test in Sept 2021 which was high, however this was not followed up until May 2023 despite me constantly questioning Doctors about what this blood result meant (“certain foods/stress can make it high”). I was finally diagnosed with neuroendocrine cancer in May 2023 after one specialist ordered a follow up Chromogranin A test which was higher again. I then had a DOTATATE PET scan and they found an NET in my small intestine. The oncologist, surgeon and other hospital staff were astounded that the initial Chromogranin A test wasn’t followed up sooner. I had a small bowel resection via open laparotomy in August 2023, lost more weight and am still struggling with extreme fatigue. I also developed a surgical site infection which was almost as painful as the surgery itself. I think 2 years of my body being in such a weakened state is making my recovery more difficult. I wish that someone had taken my symptoms seriously much earlier. I had a feeling it would be neuroendocrine cancer after seeing Michael Usher interview Dr David Chan speaking about NETs on TV and most of the symptoms seemed to fit, I literally felt my stomach sink with realisation.
My tumour was grade 1 and stage 1 and I will be monitored annually for 5 years in case of recurrence. I feel like I am “one of the lucky ones” because it hadn’t metastasized, but any cancer is still extremely scary and what I have been through for the last 2 years is extremely harrowing and hard to deal with.
My youngest daughter is 10 and she can’t remember a time when I was well, it is heart-breaking how much time we have lost. I am hoping in the next few months that I can recover and get my normal life and strength back. I have a lot of plans for the future and am working with an amazing psychologist to help me deal with the trauma of being so ill and undiagnosed for such a long time. I am looking forward to getting my happy, funny self back!
When I was finally diagnosed and I let everyone know that I had neuroendocrine cancer, my husband, kids, and family were there every step of the way even though they are exhausted themselves. A lot of other people were supportive at first and said they’d be there with me every step too, but then I didn’t hear from them again. I think people don’t know what to say or how to support someone with cancer and I was just too exhausted and overwhelmed to ask for help. My mental health was getting worse, and I felt incredibly angry at the medical community for fobbing my symptoms off for so long.
During this difficult time between my diagnosis and surgery, I didn’t know who to turn to for support. I eventually found the NeuroEndocrine Cancer Australia Instagram page then contacted the NET nurse. She gave me so much support and information, wasn’t rushed like medical appointments and the resources that she emailed me were also full of useful information that I could share with my family. I feel better equipped to advocate for myself now. I don’t feel so alone anymore. After my surgery the NECA NET Nurse gave me information on what to expect, diet, movement, questions to ask in appointments etc, all of which was lacking from the hospital. This NET nurse service is absolutely priceless. Thank you immensely NeuroEndocrine Cancer Australia and the free NET Nurse for providing a safe and informative space. I am planning on sharing my story to raise awareness and raising some vital funds so they can continue to support me and others who have had or are living with neuroendocrine cancer.
You know your own body better than anyone, keep pushing for doctors to listen and find someone that can advocate for you if you are too exhausted.
Watch Denae’s story feature on Channel 7’s The Latest with Micheal Usher for NET Cancer Day (1o Nov, 2023). Click HERE to watch.
