Brian, ACT

Name: Brian

NET Type:

  • Unknown primary

My Husband died 5 days before his 70th birthday on 21 October 2023.

In 2017 Brian was diagnosed with prostate cancer and it was aggressive with a 9 out of 10 rating on the Gleason scale. He immediately had surgery, chemo, radiation and then hormone therapy. He coped well and never complained. However, the treatment caused side effects such as weight gain.

We always thought if cancer did come back there would be treatment options and any flare ups related to his prostate cancer. To our horror just a few years later Brian was diagnosed with another type of cancer – this time Neuroendocrine Cancer. We were absolutely destroyed as the diagnosis was very grim.

Brian was diagnosed in January 2023 and the cancer was mainly in his liver but also other sites like lungs. If he didn’t have treatment,  he was given a few months to live and with treatment maybe 1 – 2 years. He started chemo immediately.

With determination and always a positive spirit Brian started chemo three times a week with two weeks off and this lasted for six treatment cycles. In May/June 2023 he had a break in treatment, but a pet scan showed he needed more chemo. Sadly, it really did nothing and he didn’t finish the last cycle. From initial diagnosis to death it was a mere 9 months! I said when he died I needed to do something in his honour (other than donations) and I am willing to share his story. This is a horrible cancer and diagnosis just comes too late. Brian had really no clear symptoms and if he hadn’t complained about a sore arm I am not sure what would have happened. His GP ordered a CT scan in December 2022 and then January came, and reality hit us. I miss him every day and he had so much more to give.

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More patients diagnosed with Unknown primary

Judy, SA

  • Unknown primary
The results showed 15 tumours in my liver. Within days I had a biopsy, which confirmed it was a neuroendocrine tumour. I had never heard of this type of cancer prior to being diagnosed.

Shirley, QLD

  • Unknown primary
I had my usual check, but I had not been feeling great, no energy, reduced appetite and I had lost weight. My abdomen was constantly distended and I realised I was burping a lot, something I never did much before.

Kim, TAS

  • Unknown primary
The first thing I did was google NeuroEndocrine Cancer Australia and sign up to their newsletter. The NET nurse in Sydney emailed me in response asking if I wanted a phone call. I remember asking the NETs nurse – “how long have you got to talk with me?”. She talked with me for a long time. I was very scared and sad.

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