I have to confess that after that wonderful meeting with the Oncologist, The Mr & I had pretty much excluded the option of the Trial – not because we didn’t want to do a trial – but because the Oncologist hadn’t really seemed that positive – and the impression he gave about the Sentinel Node Biopsy was that it would be very expensive….and by that we started thinking figures of £15K and as a result thought – why would we spend that much on yet another 50/50 chance when there might be other options especially considering it was such a big operation (apparently).
So we ask for a copy of my Path Reports to be sent to us and we start making wider enquiries – America, Istanbul, France – what treatments are offered there & at what cost….I was not feeling massively positive – I don’t want to upset the dinkies any more by taking them out of their routine – away from the school & friends & family to watch mummy go through various Medical procedures – neither do I want to financially cripple my family based upon a 50/50 chance….I know that this isn’t the viewpoint of everyone & The Mr would move heaven & earth for me….but still ….I was feeling particularly despondent.
After a week of total silence from the Oncologist I chase to find out what the latest news is regarding his investigations – am I eligible for the trial & what is the private cost through the Plastic Surgeon at Cheltenham hospital for a Sentinel Lymph Node Biopsy?….The answer is Yes I am & yes they want to see me – the Sentinel Node Biopsy can be done – the hospital would charge £1,500 for the operating room & overnight bed & he estimated the Surgeon & anaesthetist would charge about the same – somewhere between £3,000 to £4,000 for the SLNB.
OK I say – but before I commit to the money I want to meet with the trial people & talk about it. I am given the name of the person running the Trial – Dr Mark Middleton – I google him & I start to feel more positive. The Mr however is worried that I will get trapped into a trial that I can’t get out of even if I am on the placebo & something better comes up.
So anyway – on Thursday 22nd August The Mr & I hoik ourselves up to Oxford.
We meet a lady called Dr Valentine Macauly.
We start with discussing me – my background – the Mole….we watch as she visibly recoils when we inform her that 2 dermatologists saw the mole in October and didn’t take it off.
She starts to talk about the trial & the fact that we need a SLNB first – we say yes we know that & that we have found the money …..again she balks – why do we have money for it….well because they are not done on the NHS – er yes they are – we do it here & we would do yours.
So the SLNB is a small operation (not a big one as we were informed!!!), where they inject dye into the primary site (middle of my scar on my back) & watch which 1 or 2 lymph nodes the dye goes to as this would be the natural path for the Cancer Cells. They would then remove the central node from the lymph node cluster & test to see if it is Cancerous.
If it is I would need a second & much larger surgery to remove the Lymph Node at that site completely.
The Trial itself sounds positive – it is for a drug called Vemurafebib & whilst the side effects are considerable the monitoring & additional tests I would get under the care of the Oxford team are a considerable plus.
So we leave very positive – we are going to do it – we await a phone call from the Oxford Plastic Surgeons to arrange the SLNB.
Whilst we are feeling a tad annoyed that so much of the information we have been given so far is so wrong….we are very enthusiastic – it feels a bit like hope – I do stand a chance after all.