Sharon, Australia
Sharon from Australia shares her experience with neuroendocrine cancer.
How were you diagnosed and how long did it take?
Amongst other vague symptoms I was experiencing stomach cramps during the night making sleep difficult. However, I usually appeared fine during the day, I was 37 with a 3-year-old son, so I pushed on for a while.
Then I decided to see my GP. Although I gave him very little to go off, he took me seriously and pushed for a diagnosis. After ruling out what he could, he then referred me to a gastroenterologist for a colonoscopy. During the procedure biopsies were taken.
I was then referred for imaging, further blood tests, as well as 5-HIAA test. I then met with a surgeon and a right hemicolectomy surgery was discussed. Everything moved quickly. I went from having a colonoscopy at the beginning of September 2015 to having the right hemicolectomy at the end of September 2015.
Neuroendocrine cancer (G2) was found in the terminal ileum which was excised during the resection. The primary tumour was completely excised.
I was lucky to continue to receive great medical care from all involved. My surgeon discussed my case with a NET specialist oncologist. I also saw her straight away to organise any follow up needed.
I continued with regular blood tests (CGA), PET scans, with the oncologists and colonoscopies with the surgeon.
What treatment have you had and how did it affect you then and now?
Thanks to a proactive GP my initial treatment and follow up monitoring have been all I have had to contend with. I know if left longer my outcome could have been quite different.
What impact has the diagnosis had on your personal life?
While I try to have the confidence to discuss my experience with confidence, how people respond can vary. So, it is something that I have worked on to feel more confident about. I understand people’s experiences are all different, but I like to communicate that if I’m ok to discuss it then it’s ok for you to hear it. It also raises awareness. After all, I may be someone that they can talk to if they or someone they know ever experience something similar.
What lessons have you learnt along the way (if any)?
I learnt to listen to my gut, literally! That trusting yourself, gaining knowledge from the right places and advocating for yourself is important. Surrounding yourself with the right people is also important, whether it be your medical team, or the people in your everyday life, people that will be in your corner and vice versa are the people you want and need to be around.
Who’s been your hero? Perhaps it was you!
I have found inspiration in many people. It wasn’t until after treatment that I decided to participate in an actual organised running event. I started with a 5km event and loved the running community vibe. No two people are the same, but most are willing to share the joy of the experience. I’ve even completed trail ultra running events.
Recently I’ve even completed a multi-day stage running event at the Larapinta Trail, Alice Springs. When I was in hospital for surgery my son was 3 years old. My goal was to get home to him and continue to be his mum. At Larapinta when putting one foot in front of the other climbing rocky ridgelines I kept thinking of him – to show him that we can do hard stuff!
Did you get any help from a patient organization during your journey?
NeuroEndocrine Cancer Australia – invaluable! I think they should be known about right from the very start. The sooner the better as it can be such an overwhelming experience.
How are you now?
Today, I just had my 10-year visit with my oncologist. I have continued monitoring and am happy to report that I am still “No Evidence of Disease”.
The plan is now to continue with yearly blood tests (CGA), and now the PET scan (gallium dotate) will be 3 yearly. I will also continue with regular colonoscopies.
This story was published with the consent of Sharon. It is published on the International Neuroendocrine Cancer Alliance (INCA) website: https://incalliance.org/stories/sharon-australia/