What I Have Learned About My Tumour

After getting the diagnosis of a pituitary tumour, I had to wait about a month before seeing a doctor who could actually tell me more about what this meant for me.  That wait was excruciating.  I am somebody who likes to have all of the information about anything I am going through, so to only know that my prolactin levels were high was not adequate for me.  For that reason, I spent a lot of time on Google trying to figure out which of my symptoms were actually due to the tumour.  This is actually not a good idea and I would not recommend it.  There are way too many scary things on the internet. 

Beginning in January, my life became a series of appointments.  I saw a neuro-ophthalmologist, a neuro-surgeon, an endocrinologist, an anesthesiologist, an ear-nose-throat doctor, and I also had a CT scan done.  Here are the things I have learned about my case through all these appointments:

1.  Although the tumour is contacting my optic chiasm and one of my optic nerves, my vision is not actually being affected (yet).

2.  My case is abnormal in the fact that the tumour has grown a significant amount in two years.  We know this because I had an MRI done in 2013 for unrelated issues which showed no growth in/around the pituitary gland.

3.  The fact that my tumour has grown so quickly is one of the only reasons the neuro-surgeon will even consider doing surgery at this point since my vision is not being affected.

4.  My prolactin levels are only mildly elevated.  This means that the tumour is not actually secreting prolactin (which is what I believed until I saw the endocrinologist) but the tumour is pushing on a certain part of the pituitary gland which is causing the level to increase.  For this reason, it cannot be treated with medication and surgery to remove the pressure on the pituitary gland is the only way to bring the prolactin down again. 

5.  The endocrinologist doesn't think my fertility will be affected in the long run (which is a relief because I didn't know if it would be and I do want to have kids one day).

6.  Although the surgeon said the growth on the MRI looks like an adenoma, we can't know for sure what it is until it's taken out and tested.