Rachel Burnett, QLD

NETs has totally changed my life. I was a bit of a gym junkie before and now have had to cancel my membership due to pain and fatigue.

1. What impact has NETs had on your life?

NETs has totally changed my life. I was a bit of a gym junkie before and now have had to cancel my membership due to pain and fatigue. This has been the hardest thing to deal with. On the upside I now am looking at life from a different perspective. Im fully aware of every day and try to squeeze in as much as I can. Im consciously trying to spend quality time with my kids and grandkids. Sometimes family forget that Im sick and I often have to remind them. I guess its that cancer/chemo mentality, where your expected to look sick with no hair and eyebrows.

2. What has been most helpful to you in your NET experience?

Without a doubt NeuroEndocrine Cancer Australia! If it were not for you guys, I don’t know what I would have done!!! I cannot speak highly enough of everyone I have dealt with. You are an extraordinary group of caregivers, volunteers etc… Whenever I have been worried due to lack of knowledge by my treating team, Kate is always there with a reassuring phone call or email. Also I would like to give a special thank you to all the members on our Facebook Support Group. What a wonderful bunch we have. Always ready to offer advice despite their own circumstances. So, so grateful.

3. What advice would you give to a newly diagnosed patient?

Firstly I would advise them they are about to ride a merry-go-round. Where sometimes you can jump off for a while, but oftentimes you are on it for quite a while. Secondly I would definitely direct them to the NET specialist directory. This is definitely important. Thirdly, in the beginning keep online research to a minimum for your own sanity. And finally you need to be your own advocate! Ask questions. If you don’t understand ask again. If you feel something is wrong, question it! Get copies of all your reports.

Patient Stories

Dan, VIC

I know that I don’t have all the knowledge or tools in my kit to win the mental game by myself, so my family and I reach out to the amazing, experienced resources that are available at NeuroEndocrine Cancer Australia. It really helps to have someone that can validate how I am feeling or explain the processes and cycles that I will go through.

Karen, SA

My days and months have been spending time and money on and in medical appointments, tests and scans, rooms, clinics and medications and listening to profoundly specialised medical jargon, which is not always explained fully and sometimes assumed to be common knowledge,

Roxanne, ACT

The hardest thing has been actually finding out what was wrong with me. No-one could tell me for months and the toll it took on me and my family was devastating. The lack of knowledge of NETs amongst the medical fraternity amazed me. Still a long way to go.

Judy, SA

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.