Hello
My 16 year old daughter has just had results from a second MRI (with contrast) which stats she has the start of an evolving pituitary macroadema. She has been referred to encrinologists and oncology. Her FSH has also come back raised.
The reason I’m on here is to ask if anyone knows what’s going to happen next? Due to the current situation all appointments so far have been over the phone and we are feeling very much in the dark.
Kind Regards
Hi and welcome to the online community
I'm sorry to hear that your daughter has recently been diagnosed with an evolving pituitary macroadenoma. It must be an incredibly stressful time for the whole family.
If you type 'pituitary macroadenoma' into the search bar in this group you will find a few posts which mention this condition. However, they are a few years old so although you could have a read of them the posters may no longer be members of the group so you might not get any replies if you respond to them.
I've found this general information for you about pituitary gland tumours which tells you how they're diagnosed and what the treatment options usually are.
Once all the tests that are needed have been run, your daughter's case will be discussed at the next MDT (multidisciplinary team) meeting. Her consultant or nurse will then go through the treatment options available. Normally this would be face-to-face but might be conducted over the phone at present.
Your daughter should have been allocated a CNS (clinical nurse specialist) to ring if she has any questions. She could give her a call to find out when she's likely to hear more about what's happening next.
When you have a minute it would be useful if could pop something about your daughter's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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