J: Consultants visit

Yesterday we visited the hospital to discuss the histology of my kidney tumour and treatment for my lung tumours. The clinic was packed and running late with the consultants all looking a bit frazzled but Simon Evans, my ‘lead’ consultant urologist, was as helpful and charming as ever. He explained that the histology report from my nephrectomy (kidney removal) showed that I have clear cell cancer which is the most common kind – and therefore there is plenty of treatment experience.

They rate cancers on two different scales. On the Fuhrman scale (of aggressiveness) mine is 3 out of 4, so pretty aggressive but not utterly belligerent. On another scale it is T3A which basically means it had spread out of the immediate kidney area into the surrounding fat and potentially the local veins. We knew this already and the surgeon is confident that the affected material (including tributary veins) has been removed. The cancer had not spread up into the main arteries, as can happen.

We discussed my continuing digestive problems and the occasional pain I still get in the stomach area. He said he was not unduly concerned by those as these surgeries do have quite a long recovery time. I have been having some increased slightly sharper pain lately so am back on Paracetamol at night and I avoid bending and sitting upright a lot, as that causes discomfort. We discussed whether this might be caused by the Clopidogrel I am taking following my TIA (it started about that time) but that is not his subject.

He confirmed that the numbness in my stomach is a result of the nerves being cut. He described these as radiating down from above, like the fingers of a hand, and said the sensation should gradually return but does not always. I explained that the twinges from my left lung had not decreased and that  I now feel a slight restriction if I breathe deeply. We discussed whether I should have an X Ray to see whether there is fluid build up but I am not panting, so I don’t think that is the case and a CT scan would in any case show this.

I asked him why I had not been scheduled for a CT scan to give us a ‘marker’ for the state of the lung tumours prior to starting chemotherapy. He explained that they avoided scans close to an operation as clots etc. from the surgery could cause confusion with analysis. But he agreed a scan should be done prior to starting chemo. Except that it isn’t chemo apparently. Or is it?

Simon Evans said they tend to use the term chemotherapy to refer to a drug that is injected. I will receive tablets. When I queried that surely the word means therapy with a drug he agreed and said it was chemotherapy really. Indeed I see that the NHS web site says “There are several ways in which chemotherapy medication can be given, including tablets and injections directly into a vein.”

We then saw Dr. Olivera Frim, the oncologist, who has a rather different style. I asked her when I might start chemo and she said “You are not getting chemotherapy. You are having tablet treatment. That is not chemotherapy.” Etymological discussion did not seem welcome. I then asked her what the prognosis was. She said “You have metastatic cancer. There is no cure.” I asked her for how long her longest-lived patient had survived and she said “5 years” and gave some other details of that case which I think are a bit grisly to blog. I asked what the minimum survival time was likely to be and she said “You will learn nothing with these questions. You might die from a heart attack tomorrow.” I agreed that was of course possible but explained that I had already learned something very useful which was the likely maximum time, thank you.

Dr. Frim explained that I will receive one of two types of drugs “once approved” (not sure by who –  NICE?). The side effects are not too severe – possible nausea and diarrhoea – but the dose is knocked back if there is a problem. “After that we have another drug then, after that, nothing.”

So all this confirms pretty much what I was expecting to hear, but the good news is that the not-chemotherapy doesn’t sound too unpleasant and I will probably be able to start it in the next week or two, after I have my scan. Not sure when that will be. Dr. Frim explained “I do not know. I have requested it.” I expect the next update will be in a few weeks when I have the scan and start the err… tablets!

Today I visited my local surgery to discuss possible side effects from the Clopidogrel, and whether I need to stay on it as my first 30 days are nearly ending. I was amazed to find a vast number of appointments available when I went to book online. “Have you changed the booking system?” I asked my GP on arrival. “No,” she said, “there was a mess-up with the system.” I wish they have them more often! To be fair we can always get a same-day appointment when we really need it and they are good at phoning if you ask for that. My GP reckons I will need to take the Clopidogrel for another six months, but will check with the TIA clinic at Bath hospital, and also on possible inter-actions with the expected tablets. She has also prescribed me Lansoprazole which is a “gastro-resistant”. It is taken with drugs such as Ibuprofen which can cause stomach problems so if mine now diminish we can assume that they were indeed caused by the Clopidogrel. It is tricky figuring out how all this stuff works together and yet again it highlights how you need to be on the case as the NHS is really not that joined up however good the individuals may be. You have to keep asking the questions…

The next update will probably be after I have my scan and tablets – in a week or two. In the meantime I am looking forward to driving again which I will be able to do on Friday, that being the month after my TIA. Assuming I don’t have another one in the interim! My picking up the car keys will be a relief for my wife who is recovering well from her detached retina operation of some weeks ago but still finds driving uncomfortable and judging distance tricky –  which is just a tad awkward when you are behind the wheel…