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. 

I had an appointment on Tuesday where I was seen by yet another endo, and she stated that they most probably would be suggesting that I get an IPSS (see here for explanation) which I'm not really keen on as many have told me how unpleasant it is. What's been really bringing me down this week though is that many of these secondary treatments could lead to fertility problems. Now I definitely don't plan on having kids right now but I'd like to think that in the future I will still be able to once I'm ready. I think what upset me the most about this is that although I was aware it could happen (I read up about Cushing's A LOT) I still would have liked my endo to break it to me gently rather than having to read it the following way: In addition, we discussed today the impact of re-operation on her fertility. Especially since we did NOT discuss it in our appointment. There was no mention of this specifically, he simply stated that there was a greater risk that my other hormones would be affected.

I never thought I would have to be asking myself these questions at 27 but now I have to consider if I want to freeze my eggs or whether I should ask for a different treatment, etc... It's a lot to handle to be honest but I'm grateful that my family is supportive and that I've been able to keep a cool head about it all. I'm actually quite surprised with myself to be honest, I thought I would be a depressive wreck. But I actually feel ok about it all in a weird way. I mean I'm upset and everything but I'm still able to be positive and get on with it. I dunno, maybe I'm in denial....

I have however been thinking about this in great detail and exploring my options. I don't believe that a 2nd pituitary surgery and radiotherapy are my only viable options. I'd like to explore the idea of medication or an adrenalectomy. A new drug called Signifor (pasireotide) has been released in the UK and it was developed specifically for Adult Cushing's Disease sufferers for whom surgery has failed or who are not suitable for surgery. Here's a little info about it. I also think that I would prefer to have an adrenalectomy than risk affecting my other hormones. Sure, having my adrenal glands removed means being on cortisol replacement for the rest of my life but at least it's only one hormone I have to deal with. If I have a 2nd surgery or radiotherapy and the rest of my pituitary gets affected I could be replacing countless other hormones. I'm just not sure that's something I could handle.

But at the moment there's nothing more I can do but wait until I hear back from the doctors. I'm sure I've said this many a times before but it's the waiting and the uncertainty that's the worse. Not knowing what you can count on. I just started my Professional Doctorate a couple of weeks ago and I've been thinking about trying to get a part-time job to make some money but it's so hard to organise anything when I never know what's gonna happen. For all I know I could be checking-in to the hospital next month for surgery and I remember how long recovery was after my first operation!

What also sucks is that I can't even plan my Christmas. As some of you will know, I have no family in the UK and my parents, brother and sister all live fairly far away. To ensure that I don't spend Christmas alone, I have to hope that either I can travel, or that my parents will come visit me. Of course, they will come to me if I cannot leave but this year it means we'll all be separated as both my sister and brother cannot leave the countries they live in. It makes me sad knowing we might not be able to all be together this Christmas but I guess I just have to be grateful that I have their love and support, even if from a distance.