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NET Cancer Day   10 November 2023

Easily missed.Take a closer look at Neuroendocrine Cancer.

 #LetsTalkAboutNETs    #NETCancerDay

After 20 years of constant issues with my digestive system… the diagnosis changed my life.
Michael (South Africa)

My name is Michael Meredith, I am 75, married and live in the Western Cape in a beautiful village called Riebeeck Kasteel, which is about 80km from Cape Town.

How were you diagnosed and how long did it take?

After 20 years of constant issues with my digestive system, and three major surgeries that were no help at all, an event on August 27th 2021 changed my life forever. My wife is a doctor and at her practice they had just rented a room to a Shiatsu Massage Therapist, and my wife decided to treat me to a general massage with the new therapist. I had the massage on Friday afternoon and by Saturday I was in dire straits. I looked like I had suddenly developed mumps, I had a raging headache, and I was vomiting. My wife had me for a full blood count done; all came back clear including no cancer markers.

My wife sent me to have the lymph nodes checked and the upper abdomen, got the bad news back that night that the lymph’s were clear but they had found a 50mm diameter growth in the upper left lung.

Went for a second scan to check the full body and they found another 48mm growth on the right adrenal gland.

Then I got on the cancer train, biopsy, PET scan, pulmonologist, oncologist finally to be told that I have stage 4, neuroendocrine cancer with the primary tumour in the lung and the secondary on the adrenal gland. And I also have severe carcinoid syndrome.

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

I was told I could only be given palliative care as neuroendocrine cancer is not curable, the treatment would reduce the symptoms and possibly slow down the growth.

After 4 months of chemotherapy that had severe side effects, I felt far worse than I had ever felt from my cancer. All this time I had not seen a doctor and ended up feeling that as the treatment was palliative that they did not consider it worth the effort.

I decided to change my approach, and find an oncologist that I felt would care more. And in this process I made the following important changes for me:

  • I decided that this was MY cancer, it did not belong to the oncologist, pulmonologist, endocrinologist, it belonged to me alone and from that day forward I would decide what happened to it and who treated it.
  • I also decided the lung tumour was going to be with me for a long time so that I must make friends with it, and I also decided to give the tumour a name.
  • I called her NARIKO which in Japanese translates to gentle child.

I was only the third patient that my oncologist had come across with NETs and she decided to present my case to a panel that meets regularly to discuss all sorts of difficult cases. A surgeon with no NETS knowledge asked a simple question. How do we know that the tumour on the adrenal gland is metastasized from the lung, it has never been biopsied so this is all supposition.

My oncologist discussed this with me and I agreed to let them do an adrenalectomy and at the same time remove the tumour, and after extensive preparation, the operation was performed.

The results were dramatic, the biopsy revealed that the adrenal tumour was not a NET and this meant that my diagnosis could be downgraded to stage 1 lung cancer and consequently I was a candidate for surgery, albeit difficult because of the carcinoid syndrome.

How are you now?

As I am writing this now in 2022, I am eight weeks down the line from having a lobectomy of the upper lobe of the left lung. The biopsy of the lung, and lymph nodes have shown that the neuroendocrine cancer has not spread to other parts of the lung and I am now considered to be in remission.

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

I want thank the four heroes who have supported me to this incredible conclusion:

  • Dr Juliana – my wife and doctor, who as a doctor helped me through the process of chemo and recovery, and as a wife was always there in the middle of the night when I woke her and said “I don’t feel good”
  • Dr Benita – My oncologist who laughed with me when things were good, cried with me when things were bad, and went that extra step when she recognized the need to call for more assistance.
  • Karolina – My friend, physiotherapist, and Reiki therapist that helped before and after both procedures and still continues to motivate me everyday
  • And finally, Paola – The case worker at the medical insurance company that moved every mountain to make sure I was able to pay for the care I required, and also danced around her desk when my clean results came in.

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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