Posted tagged ‘carcinoids’

My Journey with NETs: Part Three

September 9, 2016

Liver Surgery

After an MRI scan and careful health examination to ensure I was well enough, in September 2014 I booked into Donald Gordon Medical Centre, a private training hospital in Johannesburg, for the first of two liver operations by Professor Jean Botha and his team. The plan was to first remove the few tumours on the left lobe, which would ultimately become the remnant after the entire right liver lobe (plus gall bladder) was removed in a second operation.

Prof Botha had explained to me the importance of ensuring that there was sufficient liver left to maintain liver function, and to achieve this, I would have to undergo a portal vein embolization after the first op which would effectively block the blood supply to the right lobe and divert it to the left lobe. This would stimulate growth of the left lobe and an MRI would be done after around six weeks to confirm that the left lobe was large enough to allow for the removal of the right lobe, which carried the bulk of the tumours. The PVE would be done by a leading Interventional Radiologist Dr.Charles Sanyika.

Mike Morphord, the anaethetist  visited me early on the morning of the first op, and explained the risks of the operation, as well as from the epidural he would be inserting to control pain. He confirmed that he would be ‘covering’ me with Octreotide throughout the operation to avoid ‘carcinoid crisis’ always a risk with surgery to remove carcinoid tumours.

He described them as caged bears which start roaring when disturbed. In carcinoid crisis, the carcinoids flood the system with an overwhelming amount of hormones which can be life-threatening. At the same time he would be monitoring every heartbeat through a line inserted in my wrist – he mentioned that a recent patient in a similar operation had experienced carcinoid crisis and that was able to bring her safely through this. (As it happened I did have a moment in the op when my whole body flushed and my blood pressure went haywire; fortunately Mike controlled the situation.)

I was wheeled down to theatre and the tumours were successfully removed from the left liver lobe – those familiar with major liver surgery will know of the long horizontal chevron-shaped cut across the abdomen. Afterwards I went to ICU which at Donald Gordon Medical Centre, works on the ‘closed’ ICU model. Unlike an “open” ICU where the physician responsible for the patient admits the patient to the ICU and keeps the formal responsibility for the patient and his treatment; a “closed” format means that the responsibility for the patient and his treatment is transferred to a specialist in caring for critically ill patients. Of course other Doctors, including the Doctor caring for the patient until the ICU transfer, are consulted as needed.

On the third day I was taken back into surgery for the portal vein embolization procedure. From ICU I was transferred to High Care and later discharged.

My recovery was good, and after six weeks I returned to Donald Gordon in November 2014 for the second operation. Prior to this, I had an MRI to determine the amount of growth that had occurred in the left liver lobe – this amounted to slightly more than 15% and Prof. Botha felt that I could go ahead with the second operation.

Mike Morphord was again the anaethetist and he warned me that this was radical surgery, and there was an outside chance that my liver function would not prove adequate for survival. However on a more positive note, he said that although my liver function would initially struggle to get going, in their experience patients in 90% of cases made a good recovery.

Once again I was given an epidural for pain, and in an operation lasting some five and a half hours; they removed  65% of my liver with the gallbladder,  using the same horizontal cut used in my first operation.

Recovery this time around was not so smooth. I the first day or so my liver struggled to get going; then I contracted a gram negative bacillus infection requiring strong doses of antibiotics, then I had to have fluid drained from below my lung, From ICU I spent some days in High Care before being placed in an isolation ward from which I was discharged after seven days.

In both spells in Donald Gordon Medical Centre, I was truly thankful for the dedication and professionalism of the Doctors and nursing staff, and their genuine care for me at all times. They deserve much praise for the unassuming manner in which they go about their work in often very challenging circumstances.

The team of surgeons under Professor Botha spend many hours in theatre doing liver transplants and performing other forms of liver surgery, despite which they gave me every attention during my stay, and were always concerned for my wellbeing and recovery .

For both of the operations, we were fortunate to have the opportunity of staying with our niece in Johannesburg who very kindly gave up her bed for us and I was able to slowly recover in a relaxed setting.

After the second operation, problems were swollen legs and feet, due to low Albumin levels (protein manufactured by the liver), and cellulitis on my legs. It was only after about 4 weeks just before Christmas, that I felt strong enough to be driven home to Durban some 560kms away.

Recovery too several months but slowly I began to feel better and  the Albumin levels increased to close to the normal range.

During my time in hospital, I was very conscious of God moving in all circumstances – I had made it my mission not to see myself as a victim but rather to be an encourager for the Doctors, nurses and other patients that I came across. On one occasion God led me to engage in conversation with a young man who had been struggling with a bad infection for some months – the reason for his admission. His wife and children apparently travelled a round trip of 400kms every day to visit him. He shared with me that some years previously he had a brief affair, and now felt that God was punishing him for this. I was able I hope to reassure him of God’s love for him and the possibility of forgiveness and transformation.

Finally, I have to pay tribute to the many people who have prayed for me (and continue to do so) through my illness – these include members of my own Church, the Home Group I lead, and various others in different places including the UK and New Zealand. I feel that I am carried through all the experiences I have undergone on a cloud of prayer, which has given me great peace and been a source of spiritual growth.







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

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.