24th June - Initial Pathology Report

I knew my case and any further follow-ups would now be based at St James’s hospital in Leeds where the specialist cancer centre is based.  Having received an expected follow-up letter to attend a CT scan on 1^st July (nearly two weeks post-op), I rang one of the Macmillon nurses at Harrogate to check why I had not received an appointment letter with the consultant at Leeds (it turned out the letter for this appointment arrived the next day).

During this conversation I explained that I was doing as much research as I could online into the potential next steps as this is the way I chose to deal with things.  As a result of this the nurse said that they had the preliminary pathology results back from my ‘sample’ and did I want to know them.  Well, of course I couldn’t really say no at this point, even if I had really wanted to wait to hear any news.

The nurse proceeded to tell me that the tumour was indeed cancerous and it was of a non-Seminoma type comprised of 95% Embryonal Carcinoma (I’ll refer to it as EC from now).  Ok, so what on earth does that mean!?

I quickly started Googling ‘Embryonal Carcinoma’ and it didn’t take long to learn from medical research papers (I was careful to only read quality information) that this was not the variant of cancer you would wish to pick if you were playing a perverse game of lucky dip.  I started reading terms like ‘aggressive’ and ‘likely to spread before lump is even noticeable’.  Oh no, this does not sound good.  I was further confused by reading that this variant may not register on blood tumour markers.  Until this point I’d been reassured from my blood tests that the tumour markers (measures in the blood that can show signs of the stage of the cancer) were all in the ‘normal’ range.  But does that count for nothing now given the variant I’d been diagnosed with?

I did more and more online research around the variant, I just couldn’t help myself, it’s the way I’m programmed.  I tried to be as objective as I could in the information I was reading and I certainly wasn’t looking at any diagnoseyourself.com type websites which could give false information.  I was reading technical medical research papers and first hand blog experiences by people who had been diagnosed with the same variant.  I felt this was the only way I could help to reconcile things in my own mind, even if a lot of the information didn’t fill me with positive thoughts on what my happen next in terms of treatment, i.e. chemotherapy.

I realised from all the reading I’d done that an ongoing surveillance programme (without treatment) was likely becoming less of an option.  Due to the aggressive nature of the variant, even if the consultants believe the cancer has been contained at stage 1, there’s a much higher chance of it returning.  Consequently I’d read that the likely advisable course of action would be some chemotherapy, regardless of what stage the cancer was at.