need help

[jwiggs]

i have a pituitary tumour that is 2cm vary large for one they want me to have surguary but i dont want to wanting to know that medicanes that can shrink it could it shink mine real small how long if the medicanes is shinking it and or is mine to big to do that if i dont have the surguary what will happpen

[rumpled]

There are endocrinologists that specialize in these tumors - neuro-endocrinologists. They occur in approximately 1 in 5 people (all types).
The prolactin meds (as well as many others) have side effects that need monitoring and yes, once a pit patient, always one.

As for hard to treat - some are, some are not. A gyn is not going to know how to treat a prolactinoma -  you are better off going to a neuro-endo. I can hook you up with other kids, moms and doctors.

[Dianam57]

My 16 year old daughter was diagnosed with a 2CM tumor last year at the age of 15,
she's been on cabergoline for the past year, .5 mg twice a week, so far her prolactin
levels have come down, a new MRI was done last week, still waiting to see if the tumor
has shrunk.  We were at the cardiologist today, a cardiologist is needed if your on cabergoline, this drug can damage the heart valvues, her echo today was great, no damage. The cardiologist said that this is type of tumor is really hard to treat, most
endo's don't specialize in this because its' rare although he wants me to take her
to a ob/gyn endo to see if he agrees with the treatment she is getting from her
pediatric endo.  What i've learned over the last year is that the treatment for this
can be lifelong, even if surgery is performed the tumor can come back.

[rumpled]

What kind of tumor do you have?
That dictates treatment - so you need to have a competent doctor do a lot of testing to determine the issue, and then the treatment. It may be surgery, it may be medication, it may be radiation - or all three! It depends on your tumor, your case, your health, your previous surgeries if any - etc.

I had the surgery - they use a very small instrument to remove the tumor via your nose - and depending on your surgeon, you may or may not have packing, spinal stents and other things - so you need to talk to you surgeon and make sure the doctor is experienced with your type of tumor (they vary in difficulty) as well as since your tumor is large, how much of your tumor is even operable - you may have risk to the cavernous sinus or optic nerves so you need a super duper surgeon.

Surgery is easy - hormonal recovery takes some art.

Get copies of your tests, read up, and ask your doctor more questions.

[enzymelover]

Hi!  If your tumor is a prolactinoma, the medicine prescribed to attempt to shrink it is either Bromocriptine, or cabergoline (Dostinex). You may have to stay on this medication indefinitely. If it is any other type of tumor, surgery may be your best option for a good outcome. Some doctors will try radiation first if you already have significant pituitary damage and hormone dysfunction.

My son had pituitary surgery through the nose, for a 2 cm tumor/cyst. He had an excellent surgeon and recovered very quickly, with practically no pain. I too, did not want my son to go through the surgery, but it was by far the best choice. If you get a surgeon with lots of experience in pituitary surgeries, you have an excellent chance for a good recovery. I do not recommend doing nothing. You will jeopardize your health and life.

Has a radiologist or surgeon given you a diagnosis for the type of tumor they think you have? What hospital are you going to be treated at?