John, age 46 when diagnosed, operable low functioning glucagonoma, a type of neuroendocrine cancer, of the tail of the pancreas

In January 2002 John, then aged 46, had a routine but thorough medical check up. He was feeling stressed but otherwise well and had no specific health worries. An abdominal ultrasound included in the check up package showed a shadow on his pancreas. An MRI a few days later confirmed the presence of a tumour and on 1st February 2002 John had a distal pancreatectomy and splenectomy. The tumour was successfully removed with clear margins, but the cancer had spread to three local lymph nodes. The initial pathology report confirmed it was adenocarcinoma and John prepared to face chemotherapy and radiotherapy.

However, three weeks later we learned that a meticulous pathologist had carried out some extra tests on the tumour and had now concluded that it was not adenocarcinoma but rather the rarer islet cell or neuroendocrine type of pancreatic cancer, and specifically a low functioning glucagonoma. At this time we were living as expats in Hong Kong, and there were no doctors there who specialised in this rare form of cancer. We found a specialist in London (Dr Martyn Caplin) and had a long telephone conversation with him. He suggested that we wait until May and then come to London for baseline scans and a consultation, but he was hopeful that John would need nothing more than monitoring for years to come.

Unfortunately the supposedly baseline scans showed that John's cancer had spread: there were several tumours in his liver and another in a para aortic lymph node. Further surgery was out of the question, so we discussed the other options. John has always had a very strong immune system so he chose to try immunotherapy using interferon first, even though the statistics show that this only works in 10-15% of cases. If it does work it can be continued for years and it has relatively mild side effects. Also John had never had any symptoms from his cancer so we reasoned that all we needed was for it to be prevented from growing or spreading.

John started treatment with once weekly, self administered injections of peg interferon plus monthly injections of sandostatin (which seems to increase the effectiveness of interferon) in July 2002. Initially he had a strong reaction to the interferon - high fever, tremors, joint pains and nausea for 12-24 hours after the injection - but these lessened over the next few weeks and he now only has mild after effects which he controls with paracetamol. The monthly injections are uncomfortable and have to be administered by a nurse. John has some digestive problems which may be caused by the sandostatin, or may result from his surgery. He controls these with enzymes and IBS tablets.

Regular MRI scans showed impressive tumour shrinkage and then stabilisation at a very low level in John's liver. A subsequent octreotide scan in October 2003 showed that John is effectively cancer free at present; the tiny lesions still visible on the last MRI do not appear to be active. He will continue this treatment with regular monitoring for the forseeable future.

By choice, John has changed his lifestyle. He has given up his high stress job and we have moved back to the UK where he is now taking time out to travel and do other things that he never had time for due to the frenetic pace of his work. He is looking and feeling well, enjoying life and looking forward to the future.

Update 29th January 2006

John’s three monthly scans plus annual octreoscan have continued to show that he remains completely free of cancer. His scans have now been reduced to 6 monthly. One hiccup occurred in the summer of 2005 when John suffered a mini-stroke. He recovered quickly and completely from this and a battery of tests indicated that there is no significant likelihood of any further strokes, and no heart problems which could have lead to the stroke. John was advised to stop taking the interferon at this time. He resumed taking it a month later and his subsequent scan showed that this had not led to any recurrence of his cancer. John now rarely has any noticeable side effects from the interferon, and the digestive problems have also lessened considerably so that he no longer takes enzymes or IBS tablets.

John is fit and well and living life to the full.

Update February 2007

John has now passed the 5 year mark.

Update August 2008

John came off all treatment for his cancer in November 07 and subsequent scans show him to be continuing in complete remission.