Wednesday, 29 June 2011

Lead up to the Diagnosis

Towards the end of 2010 I noticed a lump on the back of my neck. Nothing sore, just a lump. My family wanted me to get it seen ASAP, so I went to my GP who was convinced it was just something called a reactive lymph node. Happens quite frequently – seems if you get a small cut or infection nearby your lymph nodes can just swell up a bit. It had all the signs of being a reactive lymph node. The strategy was to wait and come back a few weeks later if it was not going down. The guy that cuts my hair also commented on the lump in my neck and said he often sees people with lots of lumps in their neck, and then they just go away. So all-in-all something more common than I thought and nothing to worry about.

I eventually went back to the GP, and there was nothing new to change his mind about his initial diagnosis. Just to be sure though, he recommended getting a fine needle biopsy of the site in a few weeks if it still was not going away. I arranged an appointment for this and the specialist looked carefully at my neck and said that it was just a reactive lymph node. I think there may even have been more than one lump by now but that was of no concern at all to him. He said he was unlikely to be able to get much from a small needle biopsy, but if I really wanted him to try he would give it one go. To me that was diagnosis confirmed, and so I left.

I then began my sabbatical and associated travel. My most recent trip was a 7 week excursion to the US and UK connecting up several visits and conferences. I left on April 14th with my son who stayed with me for the first two weeks. Between work commitments, we managed to see the Grand Canyon, catch a couple of days skiing in Salt Lake City and bike around San Francisco. I found it very uncomfortable wearing a ski helmet due to the pressure this put on one of my neck lumps, but otherwise no problems at all. Another lump, more visible below the hairline than the others, had begun to appear, and I decided it was time to be a bit more aggressive about getting something done about them when I got back to NZ.

During the middle part of my trip in the US, I began to feel a bit of nausea after eating, and part of my gut would ache a bit. The US is not known for its small meals and I just thought I was overeating and also eating at times my body wasn’t used to (due to the travel), so I tried harder than normal to eat as best I could.

I met up with my wife and daughter in London for 12 days towards the end of my trip. My son was now staying at home on his own for the first time in his life, which was great for everyone, and we shared delightful emails between us on his experiences running the house. I had a number of work commitments in London, but Patti and Xanthe really enjoyed touring the city together, and I would catch up with them in the evenings. My abdominal discomfort was present just about every day, although I was generally symptom free in the mornings.

On my way back to NZ, I was to spend a few days with a work colleague in Irvine whilst Patti went home to NZ. Xanthe stayed with me and greatly enjoyed playing with my colleague’s daughter. I felt incredibly lethargic during this visit but put that down to accumulation of work and jetlag. Whilst in Irvine I rang NZ to get an appointment with my GP. My gut discomfort was also present most of the day, particularly after eating. I played amateur doctor with my colleague and his wife and a gastric or duodenal ulcer appeared to be a possible explanation for my gut symptom.

I saw my GP on Friday June 6th and explained my symptoms. He expressed his disappointment that the lab had not done a fine needle biopsy and he reordered one of these. This time it would be done – I was not to leave until the lab did it. He also suggested I get an endoscopy done – basically a camera stuck down my throat to see what was going on.

My fine need biopsy was done on Wed June 8th. I remember well the doctor telling me that what she had extracted were not lymph cells, “so that is good news”. When asked what they were she said the only way to be sure was to have them removed. In hindsight I think she already knew.

I saw my GP again on Thursday June 9th. I had some good news. I had obtained approval to get the endoscopy done privately as it was something that had occurred to me whilst overseas and thus covered by my medical travel insurance. I would thus not have to wait too long for my endoscopy. His comment to me was “I am afraid I have some bad news”. On the computer screen was the report from the doctor who did the fine needle biopsy. The words that stood out to me were “metatastic melanoma”. I told Patti that afternoon.

I saw a Head and Neck surgeon on Friday June 10th who fitted me in, as a matter of urgency, to his already busy schedule. We had to get an urgent PET CT done to see whether the disease was localised to the neck, or had spread internally. As I have learnt, of particular interest in this disease, is the location of the primary site, and despite inspecting me carefully, no primary site could be found.

My endoscopy was performed on the morning of June 15th (done in the public health system, thanks to a cancellation from another patient) and a single polyp in my stomach (“likely melanoma”) was found. My PET CT was performed on the evening of Thursday June 16th (it was a 4 week wait for the scan in the public system, so I paid what was necessary to get it done faster). Whilst awaiting clearance to leave, a friend and medical specialist who had been waiting for me during the procedure, came and told me that I had Mets in both sides of my liver and some in my lungs. The worst had been confirmed.

On the morning of June 17th I saw the entire head and neck team at Auckland Hospital (21 people in the room with me at once). Removing the neck nodes was now not a priority – we must attack, with drugs, not surgery, what is inside me. The consensus seems to be that the primary site of the melanoma was in my stomach and it was developing inside me before it became visible on my neck.

On Monday June 20th, the Head and Neck surgeon whom I had first seen took out one of my neck nodes and I delivered it to labtests for something called BRAF testing. This is a genetic test, the results of which will determine the next stage of my treatment. As I write this the results of the BRAF test are not yet available. It took most of the week to get the sample to Australia (where the final testing is done) due to the ash cloud which had delayed some flights. My sample was still awaiting clearance through local customs last time I heard (Monday this week).

Last weekend, I broke the news to Zeke and Xanthe. Up to that point, very few people had known, as I had wanted to protect my kids for as long as possible. Noone wants to cause their own children pain, but this was unavoidable. I then sent out an email to a number of people informing them of what was wrong with me.


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