My name is Mark Lewis. I am living in the USA but was born in Scotland. I am 42 years old. I work as a gastrointestinal medical oncologist and roughly 1 in 4 of the patients in my practice are affected by neuroendocrine tumors. In my spare time, I enjoy hiking in the mountains with my family (my wife is a pediatrician and we have two children), watching sports (football & Formula 1), and reading.

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?
I diagnosed myself at the age of 30. I was just starting my training as an oncologist when I developed abdominal pain. Initially, I suspected appendicitis but it was actually high calcium, a condition that had also affected my father.

There are very few heritable conditions that cause high calcium in consecutive generations but one of them is a tumor syndrome, multiple endocrine neoplasia type I (MEN 1). Once I suspected that MEN 1 ran in my family, I confirmed it with genetic testing and then found growths in my pituitary gland, parathyroids, and pancreas.

What treatment have you had and how did it affect you then and now?
My first surgery removed most of my overactive parathyroid glands (of the original four, I have one-half left) which almost immediately corrected my blood calcium but I had already developed osteoporosis and it took years for my bone density to normalize. My second surgery removed the head of my pancreas before the dominant tumor there could spread to my liver.

What impact has the diagnosis had on your personal life?
Given the nature of my mutation, which is transmitted in a pattern called autosomal dominance, my children had a 50/50 chance of inheriting my genetic defect from me, which is what happened with my son. As such, I view MEN 1 from three perspectives: physician, patient, and parent. Each domain affects the other. I don’t know if I am a better doctor because of these personal experiences but they have been a source of hard-won empathy.

What lessons have you learned along the way (if any)?
I’ve learned to persist when I know something is wrong with my body. When I was first arriving at my self-diagnosis I was told I was a hypochondriac. If I had accepted that, I would have wasted more years before arriving at the correct diagnosis and treatments.

Who’s been your hero?  Perhaps it was you!
My father. He went to his grave not knowing what was wrong with him but he had a fantastic perspective: “The question ‘why me?’ is just too myopic to be asked in situations such as mine, although one knows it often is. Much more realistic is the question ‘why not me?’ Why should I be exempt from the floods and famines, accidents and disasters, that bedevil my brothers and sisters? By what extravagant mercy have I so far survived that to which so many others tragically succumb?”

Did you get any help from a patient organization during your journey?
I have benefited enormously from interacting with American Multiple Endocrine Neoplasia Support (https://amensupport.org/), an organization of patients, advocates, and families affected by MEN syndromes.

How are you now?
I am very fortunate to feel well enough to work and take care of NET patients, who teach me just as much, if not more, as I teach them!

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