Mine was 9mm.
Had an op. 8 mts ago.
IGF-1 dropped from752 to125 after the op.
Last MRI done last week showed no more tumour!
IGF-1 and GH still within normal range.
Not on any medication at present.

I'm a new member and I am learning a lot from reading about your experiences. My profile contains a history of my experience. I am wondering whether surgery is better for me or should I try taking octreotide for awhile to see how i respond and whether the tumor shrinks. I hear that a lot of people who have surgery end up on meds anyway.

ledgy,

1 cm is a pretty small tumor. Depending on its location, the chances of successful surgery can be very good. But, as I understand, octerotide would not hurt you and can possibly shrink the tumor even further.

I would go for a year of octerotide before surgery.

My tumor was 2.5 cm and wrapped around both the carotid and optic nerve. IFG-1 was right at 1200 at the time of diagnosis. Nine years, 2 surgeries and a Gamma Knife procedure, 7 tears of 6 daily injections, and finally my current Endo put me on Sando LAR a year and a half ago.......now my IGF-1 level is down to 73. Still have the daily joint, bone and muscle pains, but at least the IGF levels are acceptable.............guess I'll be on the LAR for life now or as long as the insurance holds out, because the past two times we have suspended the injections the IGF levels start rising again......................constant monitoring, that's what we have to do.

Greetings to All!

Well, I have been out of touch for awhile.....a lot going on.....the sandostatin in the clinical trial stopped working (ps I still think the first drug was pasireotide and it was more effective than octreotide), so I finally followed JohnD1's advice this summer and consulted with three surgeons to take a fresh look at the surgical option.....

Turns out that all three surgeons I consulted with think i am a pretty good candidate for surgery, so I am going to go ahead with it on September 16th....My researcher is more skeptical because she has seen so many undergo surgery and end up right back where they started with the meds.....

I have learned so much from everybody on this site and I cannot thank all of you enough.....

I have pretty much concluded that it is a 50/50 shot at success, so I am just hoping and praying at this point that I get lucky...

In any event, thanks again for all of your advice and........we'll see you on the other side!

Ledgy

After my first surgeory the Neuropathology Surgical Report stated that

MRI: Intra- and suprasellar mass 4 cm with hemorrhage and enhancing. Invades right cavernous sinus, right Meckel's cave, contacts right medial temporal lobe, and extends into sphenoid sinus - "pituitary macroadenoma".

Jul 11 my IGF-1 was 930 and had my first shot of Sandostatin. Have check up with Dr. Ezzat in Toronto in Oct for either gamma knife and or more surgeory.

Mine was 5.5cm by 3.7cm. It's smaller after two up the nose surgeries and somastatins but got to have craniotomy and radiotherapy to get rid of rest of it.

I meant somatostatin. And my peripheral vision is definitely getting better every time tumour gets a little smaller