pituitary tumor?

We just found out that our daughter (20 yrs.) has a pituitary tumor which is 6mm. We are new to this and really don't know what to ask or expect. She goes and has blood work done next week then back to the Endo.Doctor in 2 weeks. The doctor has put her on medicine thats suppose to reduce or desovle the tumar. Can anyone tell me what to expect or am i worrying to much?

[sazzy1966]

Hi there

Just thought I would write a few lines to help.  When I was 29 I was diagnosed with a pituitary tumour and had this quite painlessly removed transphenoidally (through my nose) without any ill effects.  It depends how big and dense the tumour is, some may have to be removed through an incision in the skull if necessary.  This is followed by the administration of steroids to allow the bodies glands to function normally as the pituitary does not like to be interfered with and can sometimes shut down for a while.  All in all, I was back at work after three months and never looked back.  I hope this helps.  Sharon

[rumpled]

Treatment depends on the type of pituitary tumor (some respond to medications, some need surgery) and size. Needless to say, once you are a pituitary patient, you are forever and should get follow up consistently as changes may happen at any time. The tumors that are treated with meds may need varying amounts of meds and if they stop responding, may need surgery. She will likely need the medication forever and may need other hormones as well as hormones are a system and when one is off, others go off.

If she is managed well by her doctor (who should be a neuro-endo, not just a regular endo), she should have a normal life. Still, sometimes these tumors do get rather complex. In my case, it was thought that I had a prolactinoma as I was lactating. That type can be treated with meds. My doctors, however, told me to ignore the tumor and thought my issue was more thyroid. In the end, I had another pituitary tumor, Cushing's disease which is far more complex. When I had surgery (which is currently the only treatment for Cushing's), they actually found two tumors, both the Cushing's and the prolactinoma.

Please do research, make sure you have the best doctors, and get follow up.

[gacrews37]

Thanks for the info. I will make sure that she see's a neuro-endo. I really don't know what kind of endo dr. is that she is seeing now.We were told that she would be on the medicine for the rest of her life. She takes it twice a week. She has the prolactinoma kind. Her Gyn. found the tumar. She was leaking from her breast which she has no children and she has always had migraine headaches but i don't know if this was from the tumor. The gyn order 2 MRI's and that's when they found it. Is 6mm very big for a tumor?

[rumpled]

Pituitary tumors are classified as to whether they are larger or smaller than 10mm.
6mm is considered a micro-adenoma and less than 10mm. A macro-adenoma is greater than 10mm.
Because they are hormone secreting, even small tumors can have a lot of effect. Larger tumors can effect the eyes and other structures and be nasty that way and have hormones, or not.

[gacrews37]

I'd like to thank everyone for their advice. It's made me understand it a little better. Talk to ya'll soon,
K.Crews

[mahtigwess]

I had my tumor removed 26 years ago @ age 20. The one thing no one tells you is you are on these meds for life. You can die without them. I went through menopause at 27 and can never have children. In my case, the Diabetes Insidipus (fairly common after effect of the surgery) stuck around and I have it for life. I went into a myxedema coma 11 years ago and almost died and was recently diagnosed with Thyroid Resistance Syndrome, so I take an obscene amount of Synthroid.

I've been through the ringer with these meds and have had just about every side effect with them.

If you and your daughter choose surgery please be supportive and loving. It's what's got me through the past 26 years.

[rumpled]

DI is usually transient (which is common after surgery), not usually one that stays around - sorry you were one of the rare ones. Are you using pills, nasal spray or the combo? Are you able to get meds now with the shortage?

What type of tumor did you have? Was it large? It sounds like the surgeon took a lot of  your pituitary.

I am also panhypopituitary and take everything but I don't have DI.

Are you working closely with a neuro-endo to minimize side effects? I schedule my meds to take them at different times to prevent taking certain ones together - such as I take my thyroid meds in the morning and calcium at night. I set everything out in weekly pill things that have sections for 4 times a day to help compliance - even so, it is a pain. I wrote down all my meds and made my doc come up with a schedule that worked better for me so I have what I take without food, with food, afternoon, at bed etc. Hormones don't follow the normal schedule.