1st July - CT Scan and follow-up appointment

I headed with Jacki to St James’s for my CT scan.  The results of this will determine what stage the cancer is at.  Stage 1 would mean it was contained to the testicle, anything else would mean it had spread to some varying degree, e.g. Stage 2 would mean it had spread to my abdomen and so on.

I followed the CT scan and subsequent blood tests with my initial meeting with the St James’s specialist nurse and junior Oncology consultant.  I explained everything I knew regarding my diagnosis to date and become increasingly frustrated by the nurse’s reluctance to discuss any potential next steps.  To be honest, I simply did not like the manner in which she addressed me and Jacki, nor the junior doctor either who she frequently spoke over.  He was much softer spoken and I could tell he was trying to be more open and honest with me, but the nurse kept interrupting him.  Highly unprofessional I thought. 

Her attitude to me felt very patronising and didn’t display much of a caring manner at all.  For example, when I mentioned that I knew I had 95% Embryonal Carcinoma she blunty said “you don’t need to worry about that, you just need to know it’s a non-Seminoma type”.  Of course I need to worry that it’s 95% EC!  I had done enough reading to understand there are various types of non-Seminoma type diagnosis, it’s not simply a broad brush ‘one size fits all’ approach to the treatment.  I knew it was aggressive and spread quickly, so I wanted to understand the potential consequences better, including the likelihood of chemotherapy, even though I was reassured that EC is very receptive to chemo – which is obviously a good thing!

On top of this I was given a further breakdown of the pathology report which showed there were signs of ‘vascular invasion’, which in simple terms means the cancer had started to try and escape from the testicle – another key sign I knew from my research which pointed more to the likelihood of needing upfront chemo.

I left St James’s feeling angry and frustrated that I had not been able to engage in a more constructive conversation to understand the likely next steps, even if the full picture wasn’t known at this stage due to waiting on the CT scan results.  It was only when Jacki and I pushed to say that we needed to consider future plans; how soon would chemo likely start?  How many cycles may be needed?  Mentioning that we’d need to ensure childcare for Lyla was in place, I needed to give work a more informative update – logistical issues like this that the nurse didn’t seem to appreciate until we explicitly outlined them.

I did leave hospital that day with an appointment for a further follow-up the next Wednesday by which time I knew the various consultants would have reviewed my case in order to determine the suggested treatment.  I was already preparing myself mentally for chemo, I just hoped the number of cycles would be limited (more about that in a bit).

So, another week will go by without knowing what the full diagnosis is, although I understood I was edging ever more towards needing chemo.