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NET Cancer Day   10 November 2024

Easily missed.Take a closer look at neuroendocrine cancer

 #LetsTalkAboutNETs    #NETCancerDay

A shoulder injury that would not go away led to X-ray and eventually to paraganglioma diagnosis.
PATIENT
Jack (New Zealand)

I’m Jack van der Salm from New Zealand, currently 66 years old, and with my wife Jo-Ann, we own a dairy farm at Sheffield, about 40 km west of Christchurch. We’ve been married for 44 years now, have 6 children and currently 17 grandchildren.

Being a farmer, there’s not a lot of spare time, but I’m happiest outdoors, have loved tramping in the mountains and bush, and have always been a keen follower of sports, especially Kiwi sportspeople.

How were you diagnosed and how long did it take?

I had an early shoulder injury, from playing squash back in the day, that wouldn’t go away, and then wouldn’t respond to chiropractic treatment. It was late 2006, and after  months of little to no response, an X-ray revealed a mass, which led to hospital specialists and a keyhole biopsy that morphed into a full blown thoracotomy, and about 40 hours in ICU. Due to the relative rarity of this type of cancer at that time  oncologists got involved and eventually I was given a diagnosis of a mediastinal paraganglioma. This was May 2007. This paraganglioma has now metastasized throughout my body, mainly in the bones and some in my organs.

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

From overseas advice, chemo was not an option, as it didn’t work for paragangliomas. Treatment then involved radiation, targeting the tumor as much as possible, but resulting in some scarring of my right lung. This reduced my lung capacity by about 30%, so consequently I don’t have the same stamina that I had in the past, despite my age also having some input. There has been continued monitoring of my condition via CT scans, MRIs, PET-CT scans, along with the regular blood tests and consults with oncologists and endocrinologists. From May 2022-Jan 2023, I had 4 cycles of Lutate PRRT, which hopefully will eventually sort out the small metastatic tumors and stop the large tumor.

What impact has the diagnosis had on your personal life?

At the time of diagnosis we were devastated. It felt like our whole world was tipped upside down. But we decided to fight this head on and just get on with it. As we found out a little while later, I had inherited a mutated gene SDHB. Geneticists got in on the ride, and through their testing, 4 of my children have the gene, one of which has had 3 paragangliomas removed, and so far, 6 of my grandchildren. Within the family, we talk openly and honestly about it, so there is some impact there. For me personally, the paraganglioma has caused extensive destruction of T4 and T5 vertebrates. So as a result, I’m unable to do a lot of physical activities that normally I would with having 6 children. I really did enjoy my squash at the time, but that’s stopped. My quality of life is still excellent, so I figured the limited physical activity was a small price to pay. I could have been wheelchair bound.

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

Quite a few really. At the time, I did a lot of reading and research on my type of cancer. What I found was that some ‘cures’ worked for some people, and not for others, despite the best of intentions from friends and people we knew in the community (they were so helpful and supportive). There is no hard and fast rule. I learnt that having a positive mental state made such a difference to me, and all my immediate family and friends around me. I learnt that there are many forms of cancer, affecting a lot of people, some worse than others, to the point where you just don’t know who is compromised and who isn’t. Almost everyone has a story to tell, so you can’t ‘judge’ anyone. My biggest learning is that there is always ‘someone worse off than me’, especially when you see the little kids in hospital, newborn babies with issues, etc. My own youngest sister died at 47 from cancer, leaving 4 kids for her husband to bring up. I really had nothing to complain about.

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

As above, I’m inspired and humbled by mostly young people that have endured cancer of any description, diseases, disabilities, etc, and they just get on with life. They, mostly, just accept their ‘lot’, and make the most of what they are dealt with.

Patient organization, etc?

I do feel a little guilty for not supporting the cancer society (in my case) more. Prior to my PRRT treatment in 2022, I hadn’t heard of the NET family. Maybe being near Dunedin earlier on, and latterly near Christchurch, had something to do with it.

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

At present, I’m still good. Great in fact. My present quality of life is great considering the potential alternatives. Other than T4 and T5 being ‘suspect’, I try to be sensible with what I do, am currently considering retiring from the farm, and then enjoying life more with my wife. We’ll have plenty of time to watch the grandies grow up and develop into fine young men and women.

 

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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