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NET Cancer Day   10 November 2023

Easily missed.Take a closer look at Neuroendocrine Cancer.

 #LetsTalkAboutNETs    #NETCancerDay

The timeline from experiencing initial NET symptoms to diagnosis was approximately 18 months
PATIENT
Duncan (South Africa)

My name is Duncan Macduff and I am 45 years old. I am fortunate to live in the beautiful city of Cape Town, South Africa. I have been married to my wife Teri for 10 years and we have two daughters, Riley who is 8 and Frankie who is 7.

I am at my happiest when in nature and some of my hobbies include flyfishing, bee keeping, bird watching, hiking, mountain biking and conservation. I particularly enjoy taking camera trap pictures of the elusive Cape leopard found in our surrounding mountains.

How were you diagnosed and how long did it take? What form of NETs were you diagnosed with? And had the NET spread to other parts of your body?

In February 2021 I was diagnosed with pancreatic NETS (grade 2) metastic to the liver. The timeline from experiencing initial symptoms to diagnosis was approximately 18 months.

Initially after a trip to ER I was diagnosed with a gastric attack and a follow up gastroscopy identified presence of H. Pylori which was treated with antibiotics. During lockdown I made radical changes to my diet and saw a functional medical practitioner to treat what was thought to be IBS.

After 12 months of limited progress, ongoing diarrhoea and weight loss I was referred for a second opinion. A CT scan picked up a lesion of the head of the pancreas and multiple lesions scattered throughout the liver.

What treatment have you had and how did it affect you then and now?

When I was diagnosed surgery was quickly ruled out as an option and I underwent four rounds of chemo and PRRT. Overall, the treatment was well tolerated and the usual side effects were not too bad. The fear of the unknown was a big factor in the early days!

After the first round of PRRT the uptake was significant and I spent 5 nights in hospital until radioactive levels were sufficiently low enough to be discharged. The Chemo / PRRT treatment was very successful and achieved tumour reduction of c. 40%.

Since the PRRT I have been having monthly оctreotidе injections, which helps manage symptoms. Most of the tumours are stable however the largest tumour in the liver is growing. Surgery was back on the table again but discounted. I have a trans arterial embolization procedure planned for October to cut the blood supply to the largest tumour in the liver.

What impact has the diagnosis had on your personal life ?

The diagnosis was very unexpected and traumatic. The news came as a big shock as I have always been a fit and healthy individual. One of the biggest challenges is confronting and interrogating death and mortality. I have experienced end of life anxiety, particularly with the possibility of leaving behind a wife and two young daughters.

I am now working on a part time basis and have had to make a number of changes to everyday life. I am much more aware of the importance of balancing various needs of self, family, friends and work commitments.

The trauma of a cancer diagnosis cannot be underestimated but it has also been the catalyst to a deep personal transformation and awakening process. I have received a huge amount of support so now I would like to work with compassion and clarity to give back and assist other NET patients, particularly those with more challenging life circumstances than my own.

What lessons have you learnt along the way (if any)?

I am learning every day! Learning what it means to surrender control, ask for help and receive help. I have more self-compassion and have reframed what it means to heal. Having gone through a thresholding process I am now more at peace with the new direction my life has taken. Staying curious and always asking questions are helpful tools for navigating life with NETs. I am more self-aware and conscious about how I choose to show up on a daily basis. Mediation and cold water immersions also help keep me honest!

Who’s been your hero? Perhaps it was you!

My wife Teri is an incredible human being and she has closely supported me on every step of the journey. The trauma of the initial diagnosis hit us both hard, especially having our young children to think about and manage through the process. I am so grateful on a daily basis for everything Teri does for our family. She is a rock and an inspiration! Being a mom is hard enough and when you throw in the complexity of a husband with NETs it takes a very special person to live every day with courage, compassion and grace!

Did you get any help from a patient organization during your journey?

I discovered Linda Greeff and NETSAS in July 2021 and really appreciate having NETSAS as an intimate support group that shares knowledge and understands the complexity of NETs. Volunteering with NETSAS has been a very rewarding experience. I believe acts of service and helping others is a key enabler for healing.

How are you now? 

I always say I feel like a bit of a contradiction… I am feeling good, have reasonable energy levels and am in a healthy head and heart space. When I have a scan however, the results paint a different picture… I have learned to accept this is my path and staying focused in the present and making meaning keeps me grounded.

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NETs are more common than brain, ovarian, and cervical cancer and incidence is on the rise.

We need the help of our global community to raise awareness and improve diagnostic times and the quality of life for NET patients around the world.

On November 10, help us spread the word

Know the symptoms. Push for diagnosis. #LetsTalkAboutNETs