Pituitary Tumor Support Group

I had xrays and a MRI for a nasal issue this week to discover that I have a 15mm tumor at my pituitary gland. I had 8 vials of blood taken and a 24 hour urine test will start tomorrow. I have an appointment now with neurosurgery on 28Jun12. I have spent the last 24 hours reading everything I can on this. Can anyone tell me if 15mm is large for this type of tumor? Does it absolutely need to be removed? I do not know if I have symptoms as the symptoms that arise from this tumor have been "normal" life for me. I am in the military having served for 19 years so how will this affect my service? I appreciate any assistance.

- Dave

Hi Dave, at 15 mm your tumor is considered a macroadenoma, but it's not huge. My husbands was 2.6 cm (or 26 mm). I've spoken to people on these forums that had tumors as large as 4 to 5 cm removed. The location of the tumor can be more important than the size, your neurosurgeon will help you with this information.

Does it need to be removed? This will depend on wether or not you are suffering any mass effects from the tumor (headaches, vision problems, etc.). It will, also, depend on wether or not it is secreting a hormone. While these tumors tend to be slow growing, it will grow. I don't know why anyone would wait until it's larger and more difficult to remove. Just the psychological effects of knowing it's in there can be daunting. The surgery to have it removed is scary, but truly no that bad.

You should be able to live a perfectly normal life after receiving treatment for your tumor. If it is functioning and causing any symptoms, you should hopefully be able to get relief from these.

Keep us posted on the results of your labs. What type of tumor you have will help determine your treatment options.

Good luck.

Thanks for the assistance. I am anxious to meet with the neurosurgeon to find out what is going on. I will post more on Thursday.

Well I met with a neruosurgeon today. He stated that I needed to go see an endocrinologist and he will give me more tests to take. I was told I had a 15mm x 15mm x 16mm tumor that is 1mm from my optic nerve. Overall I have to wait until I see the endocrinologist to see what is next. The wait continues...

hi,

mine is 35mm x 35mm x40mm well it was at the last MRI (await my current results this week).

Mine is wrapped around the optic nerve and carrotted arteries so they wont operate at the moment.

What type of tumour is it? There are several tumours that the pituitary produce?

As mine is a macro adenoma which is a prolactinoma. With me they are aiming to shrink it down by meds then surgery to remove it once it's small enough we think. But they haven't decided yet.

Hope you get on with your endocrinologist and they can answer some questions.

I met with the endocrinologist. He says my tumor is not producing anything so he suggests waiting 6 months then getting another MRI. Now I am confused. The neurosurgeon stated that it will grow. Shouldn't I just have it removed now?

Mr Badger,I hope your treatment goes well.

The decision to remove is really up to you and the neurosurgeon. This opinion can and will vary from surgeon to surgeon. Many people have had a surgeon take the wait and see approach and seek out another surgeon so they can have the tumor removed immediately. The smaller they are, the less invasive they are and the easier they are to remove. I'd want it out of there now, but that's really for you to decide.

Thanks for the advice "worried." Hope all is going well for you.

Hi there!

For me the decision to have surgery or not was based on whether or not the tumor was actually already impinging on the optic nerve.

If it if still 1 mm away from it, that means it is not yet touching it or hurting it so they feel they can wait and see, some are very, very slow growing. I have had the surgery twice so if you have any questions please feel free to ask!

Terry