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NET Cancer Day   10 November 2023

Easily missed.Take a closer look at Neuroendocrine Cancer.

 #LetsTalkAboutNETs    #NETCancerDay

I was diagnosed via a CT scan for kidney stones.
PATIENT
Michael (Israel)

Michael Rosenberg, born in Bucharest, Romania on 26/12/1952. I emigrated to Israel in 1970 at 18 years of age, studied Computer Science. Lived in South Africa eight years and then in the USA for 31. In 1971, after divorcing I moved back to Israel. I love travel, Asian food, architecture, classic music and Renaissance art, Hundertwasser and Margaret MacDonald. I am father to two strong women 26, and 29 who live in Washington DC and Atlanta. After my cancer diagnosis in 2006 I served as the co-leader of the Carcinoid Awareness Group, Atlanta for nine years. Upon moving to Israel, I founded MENETS – Middle East Neuroendocrine Society with the help of Prof. Simona Glasberg, Head of the Neuroendocrine unit, Hadassah Eyn Kerem Jerusalem, Israel. From our initial meeting of 17 patients and caregivers we are now over 220 members. Every year we organize the Israeli NET Lives Congress in Hebrew and the World NET Lives Congress (virtual) where we bring together patients, caregivers, and NET specialists to learn how to live higher quality lives with NET cancer, a chronic disease. We also produced a widely distributed Nutrition and NET Cancer eBook being translated into several languages.

How were you diagnosed and how long did it take? 

I was diagnosed via a CT scan for kidney stones in 2006. After a failed excision of the tumor I was referred to MD Anderson Cancer Center where I was diagnosed with non-functional pancreatic NET. I had Whipple procedure and we discovered a very small lesion in the liver undetected via CT scan. Current tumor load is around 25%

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

  1. Traditional Chemo – 2006 – three months – ineffective
  2. Octreotide 2006 – 2011 – well tolerated
  3. Pazopanib 2007 – 2009 – well tolerated
  4. Everolimus – 2011 – 2021– well tolerated
  5. Lanreotide – 2011 – 2020 – well tolerated
  6. PRRT – 2021 – four cycles – severely affected the WBC. RBC, HBC, Platelets – require blood transfusions at about three weeks. Blood counts slowly improving.

What impact has the diagnosis had on your personal life?

Retired in 2010. Volunteered for the Atlanta Carcinoid Awareness support group and also started providing consumer advice for an Atlanta Consumer radio program.

I tolerated the treatments very well. The major effect was not the cancer but food digestion as a result of the extensive Whipple procedure.

I had been practising practical ZEN and CBT – Cognitive Behaviour Therapy since 1982 so “being in the moment” is natural for me. I did notice mild depression / quick anger over the years and treated it quite effectively.

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

I have become a lot less judgemental and take myself much less seriously.

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

There are heroes all around us on parallel journeys.

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

Most of my help came from my family and the people I have been coaching since 2007.

How are you now? 

16 years into this phase of life my body is not as strong as it could be. I am now on dialysis as a result of high irradiation with Radioactive Iodine during CT scans. I am less physically active but the mind runs as well as ever, still challenging myself and others. No rest for the weary.

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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