Diagnosed with a Pituitary Macroadenoma

[Chloe-Pit-Adenoma]

Hello, its a first time joining a forum like this and to be honest I feel like a bit of an imposter, as my tumour is located in my pituitary gland, so not really a brain tumour. That being said, the brain tumour charity has been the only online resource that has some great information.

I intially had an MRI to see if there were any underlying health concerns linked to my tinnitus and was then advised there was an incidental finding. A further MRI happened over a week ago and I received my results yesterday, by email, in a Word document. Shocked is an understatement, I honestly thought they would say the initial incidental finding was a mis-read and I'd be sent on my way. No, a word document was informing me I had a tumour in my head! Gratefully, the letter did state it was a benign growth.

I have now been referred to Endocrinology (from ENT) and am awaiting my first consultation. At the moment, there are so many questions I have and today I am feeling rather flat.

Has anyone else been diagnosed with a pituitary adenoma and have any insights as to what to expect?

Thanks to whoever has read this and in advance for any replies

Edit: I have since found out my tumour is 18mm in diameter.

[Tumo Pioneer]

Morning Chloe, I don’t know if I can help as I’ve not had a pituitary macroadenoma but I have had 3 meningiomas, which were located above my pituitary gland. I’m sorry to hear you received your results in a word document, I must admit I received mine face to face, on my own as I never expected a brain tumour. I am 7 years on after 2 craniotomy’s, I’m back working full time, although a different job to what I had before. I am lucky to have a fantastic neurosurgeon and team, also my family is very supportive. As you start your journey on the brain tumour road a few things I’ve found difficult along the way is that there’s nothing to see, and people say “you will be fine” only you know how you feel, listen to your body, fatigue is a massive thing for me, but I’ve learnt to manage it as best I can, rest when you need to, housework doesn’t matter, you will catch up on a good day. Unfortunately I be lost the sight in my right eye so I had to adjust to it, kept walking into things, my concept of depth is out so I drop things. I’ve learnt to laughter about it most of the time. Don’t be afraid to ask for help if you need to.

7 years on i have regular blood tests with endocrinology, yearly scans, I’m waiting for my results from my scan a week ago, things don’t necessarily happen quickly. The brain tumour charity have been fantastic to me, sometimes just having someone to talk to eases the pain, there benefits part are fantastic especially Denise, although I did get Pip for 2 years it has stopped now. Don’t like dealing with Pip or DVLA. I surrendered my driving license as advised by Neurosurgeon, got it back after a year but only for 3 years, then had to surrender it again, to get it back for 1 year, which ran out last December, now I’ve had every test, medical there is and I’ve still not got it back, but I’ve adjusted to walking a little and bus journeys. My advise to you is look forward to what you have, ask as many questions to the people who know, take someone with you to appointments as there is a lot to take on board, if you don’t understand something ask them to explain. And remember it’s your decision what you want to do. I’d struggled for ages after my 1st craniotomy and then one day I just thought, this is the new me, I left the old me behind and I’ve never looked back. I wish you all the very best on this journey from hell, but we are always here for each other and there’s a lot of us. Stay positive, take care and be happy x

[Cedarmarie Community Champion]

Hi Chloe, I don't have relevant experience of pituitary adenoma, but just wanted to send best wishes, and that I am sorry you found out in that way . The Brain Tumour charity is an awesome place for information that I wish I'd known about earlier. I'd echo the point made by Tumo on taking someone with you, great suggestion and I did that with my sister for her appointments. Very best wishes

[Chloe-Pit-Adenoma]

Hi Tumo and Cedarmarie,

Firstly, thank you so very much for your replies and I am so incredibly sorry to only be replying now.

Life has been a bit of a rollercoaster since my diagnosis, losing a family member and not having the best of experiences with endocrinology where I am located (only the one endocrinologist specialising in pituitary conditions). Tomorrow I am meeting with an endocrinologist in London to gain a 2nd opinion on what happens next, whether that be observation or surgery.

The whole process/diagnosis has been terrifying and life changing and its hard to try and digest. I had been feeling like such an imposter as I know my situation could be far worse, which made me feel like a drama queen. I was in a real battle with my emotions. I guess a period of acceptance was needed and knowing my feelings are validated, that its OK to feel the way I feel and to be scared of what's next.

I really value your messages and tips, so helpful, thank you. I also wish you both my very best on your journeys, Tumo, I hope you scan results came back OK.

Thank you,

Chloe