so your dr didn't mention surgery?

Nope.

Well, actually, I was a bit hasty in that last response. A while back she mentioned surgery as a possibility, but I think she wants to try the medication route first.

Welcome ot the site...there is a lot of really good info on here about all the difernt treament optins etc....you want to inform yourself as much as posisble there is lots of good info on t his site ...read away

Welcome! It sounds like the receptionist didn't know how to pronounce acromegaly. Anyway, don't let the secretiveness spook you. You are now part of a very elite group! All kidding aside, we are here for you. The most important thing you can do right now is to learn everything you can about acro. Is the doctor that diagnosed you an endocrinologist EXPERIENCED in treating patients with acro? It will be very important, as many are not. There are several members of this group who live in CA. They may be helpful with local referrals. Just read back through all the old Discussion Posts. Some drs. use meds to shrink the tumor before surgery, some don't. There are lots of variables, but a common theme is that the smaller the tumor when you do surgery the higher your chances for a successful surgery . Be sure to read about the transphenoidal hypophysectomy- it is the most common means of tumor removal that involves going up your nose and through the back of your sinuses. (It sounds a lot more gross than it is, and beats all the old methods.) Did your dr. make it clear that with acro the tumor is benign? Some don't bother to clarify that. Keep reading!

I am just so surprised that the dr didn't talk more about the surgery jeriTX mentioned. My first tumor was removed that way, it came back and it was growing and the scan missed it. But I would think that would be the first thing the dr would do before treating you with the sandostatin. If the tumor is removed then it is not there to produce the hormone. Does your pituitary gland still work?

Surgery is generally your best chance at a permanent fix. (That is a slight oversimplification but the general gist of thinking these days).

My tumour was 7-8mm, and I had surgery which made a whole lot of difference.

John

Thanks for all your replies. I can tell this will be a supportive group.

Jeri TX: my endo is a general practitioner. I don't believe she deals with acromegaly on a regular basis. It is somewhat rare. But she seems very sharp, and from the beginning she suggested I might have it. But she wanted to be sure, so she decided we should wait a while to monitor my IGF-1 levels, which have been high but not astronomically so. My last blood test was the highest it's ever been, so she decided to send me for the glucose tolerance test, which came back positive. I think the odd thing with me was that I didn't exhibit all the symptoms. I do have a large proboscis and strong facial features, but my hands are actually kind of refined looking. I've had slight headaches, waxing and waning libido, occasional insomnia, and hot flashes but none of the other symptoms. Recently, I've had slight pains in my fingers too.

scaryclown: my pituitary still works. It was producing too much prolactin and not enough testosterone before, but I've been on cabergoline for a couple of years now, which seems to have taken care of that. I also went off of cholesterol-lowering drugs, which I think made a difference too, although none of my doctors seem to think it's had anything to do with my testosterone rising back into the normal range.

I'll have to bring up the surgery issue with my endo the next time I see her.

Thanks for all your responses!

For acromegaly, before you start treatment, you really do need to get to see a specialist endocrinologist who has seen plenty of cases.

However, acromegaly is a slow-progressing illness, so there is generally no need to panic, especially if your IGF-1 is not that high. It is probably better to have to wait a few weeks/months to see someone who has treated a good number, than to stumble through with someone who has treated few if any before.

I see you are in California -- there should be no shortage of good specialists there, and maybe someone here could recommend some.

John

Thanks for the advice, John from the UK. If anyone knows of endos experienced with acromegalic patients in the Los Angeles area, I'd appreciate it if they responded to me off the discussion list.

Hi John, welcome to the group. i agree with the others who have said you need to go to an Endo who knows acro and has treated it, before you make any decisions about your treatment. it sounds like your dr doesn't have enough experience. i believe you need to be educated, and your options explained, then you can make a decision as to what route you want to go. from what i understand of your situation, you have several choices... and the decision needs to be yours, not your doctor's.

I have posted a list of Endos in USA who specialize in Acro or have been recommended by people in this group. search the Discussions for my post and you will get the list. if that doesn't work for some reason, send me a private message on this group (do you know how to do that?) and I will send the list to you privately.

given your case, it sounds like you can have a good outcome, so please be positive and don't worry. wishing you the very best.

I found my posting with list of Endos, see:
http://www.dailystrength.org/c/Acromegaly/forum/10259635-acro-no

Also, regarding your question on sandostatin side effects, search the Discussions on Sandostatin, or Sandostatin side effects, and you'll find many posts on this topic as alot has been written by members.

Thanks for the info, aztreasure.

John

You may also want to look at postings to do with lanreotide (brand name Somatuline) as this drug is in the same class as Sandostatin, and side effects are very similar.

From a very personal point of view -- I had more bad effects and for longer with the drug than with the surgery,

John