Following my second liver operation, I continued with a Sandostatin injection every 28 days, and regular meetings with my Oncologist. I returned to Donald Gordon in May 2015 for an MRI and a follow-up discussion with Professor Botha.
The MRI showed that the liver had grown in size and was completely free of tumours; on the basis of this Prof. Botha was initially of the view that we could continue with an MRI every year.
However, we debated the option of having a Gallium 68 PET/CT scan which it seemed was available at a Government Hospital in Johannesburg. This Gallium-68 (Ga-68) DOTATATE PET/CT scan is a high-resolution full body scan, able to detect tumours not seen on MRI, PET, CT, or Octreoscans. Because the Gallium agent binds very strongly to the somatostatin receptors 2 and 5 of the neuroendocrine tumour cells, it can more effectively detect very small tumours and metastases. This was important for me in view of the risks of further spreading of tumours to other parts on my body.
We agreed that this was the right route to follow and Prof Botha said that he would provide the necessary motivation for the scan and would book the scan for me, hopefully before the end of 2015. My Medical Aid initially declined to fund the scan, but did refer the matter to the South African Consortium of Oncologists and on their recommendation ultimately agreed to give the necessary approval. We then discovered that the machine at this hospital had broken down and would not be repaired until funds became available in their next financial year 2016. So, it became a waiting game.
Prompted I believe by God, I continued my research and discovered to my amazement that the scan was also available at the Steve Biko Academic Hospital in Pretoria (associated with the Department of Nuclear Medicine at the University of Pretoria).
We managed to arrange the scan for the 2nd March 2016 and I set up an appointment to meet with Prof Both on the 9th March to discuss the results.
Towards the end of 2015, as a result of the muscle weakness in my abdomen associated with the radical surgery I had undergone in 2014, I developed an incisional hernia on my right side, and after consulting with my own Doctor, and my oncologist, I decided to leave this until my meeting with Prof. Botha, in case other surgery might be indicated from the results of the Gallium 68 scan.
We travelled to Johannesburg in early March and had the Gallium Scan as arranged at Steve Biko Hospital – it was an interesting experience and logistically quite a challenge to drive from Johannesburg in the early morning rush hour traffic and find our way to the Hospital in Pretoria to arrive by 9am. But we achieved this and spent most of the day there leaving around 4pm. The scan went well and I experienced little if any discomfort.
The results of the scan which I discussed with Prof Botha showed the presence of new tumours in the left lung, left adrenal gland, multiple lymph glands, and C2 vertebra. On the positive side, I am seen to be an ideal candidate for Peptide Receptor Radionuclide Therapy (PRRT). Professor Botha said that although it might be possible to surgically remove some of these tumours, he felt that the better route was PRRT treatment. This is also available at Steve Biko Academic Hospital in Pretoria.
Peptide receptor radionuclide therapy (PRRT) is a molecular therapy used to treat NETs (neuroendocrine tumours). In PRRT, a cell-targeting protein (or peptide) called octreotide is combined with a small amount of radioactive material, or radionuclide, creating a special type of radiopharmaceutical called a radiopeptide which in my case will be Lutetium 177 (Lu-177).
When injected into the patient’s bloodstream, this radiopeptide travels to and binds to neuroendocrine tumour cells, delivering a high dose of radiation to the cancer. Unlike chemotherapy which tends to impact on good cells as well, PRRT is very targeted with minimal damage to good cells, and little compromise to the immune system.
I showed Prof Botha the incisional hernia I had developed and he agreed to repair it on the 29th March 2016.
So, we returned to Durban in preparation for the return to Johannesburg for the hernia repair.
My experience with Neuroendocrine Cancer 