Posted tagged ‘carcionod cancer’

My Journey with Nets: Part Two

September 7, 2016

God Leads my Research

I often tell people that God works even through Google – that’s my experience.

For the first months of 2014 I spent time finding out as much as I could about Carcinoid Cancer which I learned forms part of the umbrella category of Neuroendocrine Cancer.

At the same time I joined a Facebook support group called Carcinoid Café which has a membership of around 2000 mainly drawn from the USA but including others from Britain, Europe, Australia and even two members from South Africa (I am one). This proved to be a mine of information and practical experience as did Dr Liu’s Zebras that I joined later.

Incidentally I learned that the term Zebra which is used by NET patients to describe themselves, comes from the training of Doctors. They are apparently advised when hearing the beat of hooves, to think ‘horses’ not ‘zebras’, I assume to avoid too much focus on exotic disease in their diagnoses. Hence the experience that many NETs, such as carcinoid tumours which are slow growing, go undiscovered with the patient’s symptoms being misdiagnosed as Irritable Bowel Syndrome or similar.

I also trawled through the official NET sites on the Web and watched a number of YouTube videos of presentations given by experts at various conferences.

It has been said that if you have lived with a relatively uncommon disease such as Neuroendocrine cancer for six months or more, you have PHD in the subject – my experience is you need to add research to this equation to really qualify; but certainly I have found myself engaging with Doctors on aspects of the disease where their own knowledge is sketchy to say the least.

The breakthrough came when God led me to read Ruth Gerdes’ story (see http://www.netpatientfoundation.org/2009/05/ruths-story-2)

In her story she made mention of a liver transplant surgeon Dr Jean Botha at Nebraska Medical Centre, who had performed major liver surgery on her to remove all the tumours on her liver. Incredibly, (although not difficult for God) I discovered that Jean Botha was a South African and was now heading up the Liver Transplant Unit at Donald Gordon Medical Centre in Johannesburg. (Some 98% of all liver transplants done in South Africa are done at his facility.) I was able to find an email address for him and emailed him that evening, and he replied I think within 10 minutes saying that he would be happy to see me.

So my wife and I travelled to Johannesburg to meet with Professor Botha who turned out to be everything that Ruth described – a man without arrogance and a leader in his field. He told me in no uncertain terms that given my situation, the “wait and see” approach was unacceptable and that if I did nothing,  the tumours would spread to other parts of my body, and that the chances were that I would be dead within 5 years. The good news however was that he could remove all the tumours from my liver through surgery in a two stage process, which he said was pretty radical but he was confident in their ability to accomplish this which should extend my lifespan by at least 10 years, instead of five.

Having listened to him, I had a sense of peace about things, and simply said that I trusted him implicitly and would be happy for him to proceed with the surgery. He responded with the utmost humility that he felt honoured to have my trust and assured me that he and his team would do everything possible to ensure that this trust was not misplaced.