Diagnosis!

So, today my GP sent me a letter outlining what she has discovered from various calls to Preston Hospital and Christies Hospital - my case hasn't been closed yet - which is what we had been led to believe!  Turns out that my case has only been closed by Preston because it wasn't cancer and they are a cancer team. Christies still have it open and have in fact been involved with confirming my histology as it is so complicated and unusual.

So, my diagnosis is that I have Benign Cystic Mesothelioma.  I thought pseudomyxoma was rare - being a 1 in a million disease, but apparently the condition I have has only been reported 153 times in the world (as of 2013)!!!!!!!  So, if you thought I was special, then you now know that I am!

It most commonly affects women my age - some say it is linked to asbestos exposure - but pretty sure that's not the case with me, or in response to chronic irritation such as prior surgery or endometriosis - neither of which is me either!

It develops in the pelvic area and or abdominal cavity including the omentum, uterus, bladder and rectum and in extremely rare cases the liver (eek - that's where he left the cysts!).  Treatment is surgery, so I'm guessing I did need it after all.

There are two types of this disease, a cancerous one and a benign one.  I have the benign one, there is only one case in the world of a patient passing from the benign version of the disease and that's because they didn't have surgery.  However, 50% of all patients will experience a recurrence of it after surgery, they don't know what triggers it or makes it reoccur, so my GP is pretty sure I will have to have scans for a while.

Christies are also going to discuss my case at a MDT meeting soon (multi-disiplinary team) and I might hear something from them if they decide on anything.

There is a suggestion that female sex hormones can trigger the development of the cysts, so no HRT for me for the moment.  My GP is waiting to hear back from Christies on whether I can be given it or not.

Anyway, it is a relief to be given a name.  Why Preston couldn't do this for me I don't know - I did get a letter from them this week, but it gave very little information and confused me more than clarified anything.  Apparently one of my treatments was the 'excision of peritoneal cyst'.  Does that mean I had a big one in there as well, my understanding was that they were all small cysts?  Anyway good old Dr Morgan has done it all and I have a much clearer idea of what has happened to me.

The roller coaster still seems to be in operation, but I am pretty happy that there won't be any huge ups and downs now.  Hopefully a case of monitoring the cysts via scanning, hopefully they will come to nothing.  Let's hope so anyway, I really don't fancy an op around my liver!