Welcome to my blog! You can start by getting to know a bit more About me or for a more detailed explanation of how I was diagnosed, have a read of my posts The Journey to Cushing's Syndrome and Part II the saga continues. Bienvenue sur mon blog! Vous pouvez commencez par decouvrir Mon Histoire avec Cushing's

Wednesday 17 October 2012

Quick update

Just a quick update this time. I've not forgotten about you but I've been pretty busy actually having a life (nice change!) My doctoral course has started, I'm attending more social events and have started going to the gym 3 times a week so my days are starting to fill up which is nice.

So the update is that I have a date for my IPSS. I have a pre-admissions assessment on Tuesday the 23rd of October. This is when you undergo a series of tests that check that you are suitable for the procedure e.g. blood pressure, weight, etc... Then, provided I get the all clear, I am being admitted on the 1st of November. The procedure will take place in the afternoon and should last a couple of hours max. I am required to stay overnight so they can monitor me. 

I've had mixed reviews about this test with some people saying it's a horrible experience and others saying it wasn't so bad. Thanks to a friend of mine I'm able to think about it in a positive way and am feeling more relaxed about the idea now. She encouraged me to visualise it as a positive experience by switching my way of thinking. Kinda like going from seeing it half empty to half full. So instead of thinking: "OMG, I'll be able to feel everything" (in a panicked, nervous way) think: "Wow, how fortunate I am that I'll be able to feel everything, they won't be doing anything without my knowledge" (in a calm, optimistic way). It's easier said than done but I've been practising every day and I really feel like I've made some progress. So much so that I will not be asking for full sedation, maybe just a little something to calm my nerves. We'll see...

Thursday 4 October 2012

Where do we go from here?

So as I've already mentioned several times, I have a confirmed Cushing's recurrence. However, this time around things aren't as straightforward. You see, although all my blood tests and urine collections are showing increased cortisol, nothing is visible on the MRIs which isn't good. It's not good because if the neurosurgeon cannot see anything on the MRI he doesn't know what his "target" is and although he could just go in and identify the tumour cells visually (apparently they look different to healthy cells), I'm not sure I trust him THAT much...

So this is where I'm at right now: my endo and other doctors will be discussing my case in their multi-disciplinary meeting to decide what the next course of action should be. At that meeting there are several key doctors such as endocrinologists, neurosurgeons and radiotherapists. As I mentioned in a previous posts there are several treatment options for Cushing's disease including neurosurgery, radiotherapy, adrenalectomy and medication. Therefore they will all be discussing what they think is most suitable considering the details of my case.