Hi Suzanna

The gold standard line of treatment in the UK is a course of Sandostatin around 6 months before surgery, this will hopefully shrink the tumour away from cavernous sinus.

Many of us here had macroadenomas and have been successfully operated on - but I cannot stress enough - it is down to the expertise of the team treating you. If you have any doubts on the expertise of your surgeon you really need to try to be referred to a more experienced surgeon. The NHS system usually dictates that you have the surgeon attached the the hospital that is treating you, but I'm sure you have a choice to ask to be operated on by a more experienced surgeon.

This is the most crucial decision you have to make - I'm not sure how you would go about researching surgeons in your area, but I used the expertise of the people on this site to get a couple of names of the more experienced surgeons.

I'm definitely less worried now. I did some research and sandostatin (or one of the somatostatin analogues) seems like a good option. I'll wait to see what the endo and surgeon think. If he's sure he can get the whole thing out without a problem, I'll have the surgery.
It's funny how everthing happens. Just a year ago, I was living in LA, working as an actor and a fencing instructor. I was having fun, but I made almost no money and had no health insurance, and I was ruining my credit. I was in constant joint pain and my weight was skyrocketing. Since leaving there I have had mixed feelings about the decision - did I give up on my dreams, did I sell out for a comfortable life? We landed in Pittsburgh, and I got a job as a researcher at (amazingly) the very same hospital where I will be treated. I never would have gotten to the bottom of this if I didn't have insurance, and I would still be treating my "rheumatoid arthritis" while my health continued to deteriorate. Sometimes, we make the right decisions by accident.
I guess sometimes you don't realize you've fallen into a pit until you look up and see the top.

Yes, Suzanna, very serendipitous! Health coverage is something that we in the UK take for granted, one less thing to worry about if you lose a job.

As for surgery, it is like a walk in the park compared with the acro symptoms (some of which you won't know were acro-related until after the op!). It sounds so awfully scary, but I was up and eating my lunch (albeit a bit slowly) just a few hours after arriving back on the ward from the operating theatre. Over the next few days, nurses kept arriving to give me codeine, but I rarely needed any painkillers. ("Here are your painkillers" "I am not in pain" "You must be" "No" "But you've been prescribed them" "I don't need any")

John

John, Your reply is right on about the pain killers for me..I think we lived with so much pain prior to the surgery that after the surgery....it was nothing...in fact I had to have my best friend demand they take me off the pain killer because it was giving me panic attacks....

I had surgery Tuesday AM ---- I was home Thursday AM..what can catch you off guard is that I felt so much better after the surgery then about the 3rd week..the fatigue hit me like a wall...you forget that if we could actualy see the wound we would take it way easier....

the key is the surgeon!

Well, my surgery is scheduled for the 4th of November. He said my tumor is very irregularly shaped and is wrapped around my carotid artery.
I asked why he wasn't pretreating me with a somatostatin analogue and he said it wouldn't shrink the tumor. I thought that was odd, especially since one of the other members here had a similar situation to mine and he started her on meds first. My husband thinks the surgeon actually thinks he can get the whole thing as is, just doesn't want to say that in case he can't. He said it was likely I would have to do radiation or meds afterward.
I guess I feel better, just having all the answers I needed, and finally having a date to begin the attack. I just hope I start feeling better soon!

Hi Suzanna

I'm quite amazed to read your last post and I was rather taken aback by the route your surgeon has decided to take. I really feel quite strongly and would challenge your surgeon with the knowledge that your gaining from other members on this forum.

Why the rush to go in to do surgery straight away, rather than waiting a few months and letting the Sandostatin shrink the tumour, hopefully away from the carotid arterty. If there is only minimal shrinkage, so be it, but at least he's given the drug a chance, most especially to give you a higher chance of a positive result from surgery.

Why take the drug after surgery and then have radiation? What you are trying to achieve is to be free of any further treatment after surgery. Taking the drug after surgery, is what you would do if it wasn't completely successful and you need drugs to maintain your levels. Radiation for some members (myself included) is a last resort choice and not something to be taken lightly. This treatment can take many years to work, so you could be on drugs for many years afterwards.

This is clearly your decision to make Suzanna and at the end of the day, not a life changing decision that your surgeon or endo has to live with for the rest of their lives. I know it's not my business, but feel so strongly that you need to challenge your team and demand the best possible care for yourself and have the highest possible chance of beating this disease and being drug free. If he is already discussing radiotherapy and Sandostatin after surgery, he clearly isn't convinced that he'll be able to remove all the tumor.

I had a reduction of around 30% before surgery and most of that was within the first 3 months of taking Sandostatin. Even though my surgeon removed virtually all of the tumor there must still be cells present that is elevating my GH levels but luckily my IGF-1 levels are maintained at a normal level. I'm convinced that had I not had the Sandostatin prior to surgery, I would not have had such a great result and would be facing long term Sandostatin injections or deciding if to have radiotherapy or not.

Please do take time to consider what YOU want and do not be pressed into having surgery, if you feel there is a better chance of a complete cure by having treatment beforehand.

Are there other reasons why they want to do surgery straight away?

I had surgery prior to drug treatment (and having had drug treatment afterwards which did not suit me, although it lowered my numbers, I am glad of that).

However, I had a microadenoma, and I am not sure what bearing this has on anything. There was less to shrink, although my IGF-1 was quite high before surgery.

John

Understand your comments John, with a microadenoma the benefits of shrinking the tumour is probably not quite as evident as with macroadenomas. I had a macroadenoma and the endo/surgeon both wanted to try to shrink it away from the carotid arteries. Some people have seen a huge reduction in size of their tumors, which must surely aid surgery.

I suppose the real benefit of Sandostatin before surgery with a microadenoma is to quickly try to reduce IGF-1 levels.

I asked why he did not want to start me on a med first, and he said that it would not shrink the tumor significantly enough to make a difference. I trust his judgement. He said my tumor was roughly 3 cm, but was very irregular and not ball-shaped as is common.
I am, however, starting to take curcumin on my own. I've read some research saying that it shrinks pituitary tumors and lowers hormone levels. I'll stop taking it prior to surgery, but since it has no side effects, I'll probably continue taking it indefinitely, no matter what the outcome. I'm feeling quite optimistic about this right now. I'll find out more information about what influenced his decision, but I'm anxious to get this thing out of my head!
I really do appreciate everyone's support and advice. This has to be the one and only benefit to having a rare disease: those of us that have it tend to band together.

Hi Suzanna,

I take curcumin myself and just want to tell you (if you haven't read) that Curcumin side effects also include an increased risk of bleeding. Since curcumin slows down the clotting of blood, it is not recommended for those who have preexisting bleeding disorders. Furthermore, risk of bleeding out is added when it is taken together with other drugs, like anticoagulants. Curcumin can also cause more bleeding during and after surgery, and should not be consumed for at least two weeks prior to surgery.

Good luck with your surgery,
Harmony

Begin with injections before surgery shrink the adenoma in less 30-40% of patients. It take 3-6 months. Dr may advise that if the patient can wait and see. I had a micro adenoma, whished I did that and not rushed for surgery !

But begin with surgery will immediatly relief congestion of the carotid artery and shrink the adenoma for sure (we cross fingers he will take all out).

The Dr decision is an arbitrage between expected advantages and risks.
Each person is a different case.

Forgot to add I tried Harmony22 suggestion of Curcumin, it gave me more energy. So I took it in the morning to be sure it doesn't cause insomnia.
Had no side effects.

Thanks, Harmony - I was planning on stopping it prior to surgery for just that reason. I asked my husband to pick some up and the only thing he could find was a blend with more boswellia than curcumin - but from what I'm reading that may have some good properties for us.

And I've changed my picture to something less...grumpy looking....

After consulting with various doctors and neurosurgeons. I insisted that I be treated with Octreotide before my surgery. I had a macro..
I was only on it for 6 weeks before my surgery. The advantage for me was: the decrease in my symptoms... my tongue shrunk by at least a third thus making the surgery safer... the anesthesiologist said so... also one of the neurosurgeons said that his epxerience with individuals who had taken the meds was that it made the tumor more "supple" and he could scoop it right out..." less risk of not getting it all he was not the neuro surgeon who perfromed my surgery in the end..
Interestingly enough I went with the neurosurgeon who did not recomend the meds to do the surgery but i took them any way and delaye dmy surgery so that I could... .. his words after my surgery to my family was I was able to "scoop it right out"...three yers in 10 days..so far so good... soon some blood work...

I was fortunate in that I reacted well to the meds...I felt immediate relief well with in two days of taking the meds and also felt so much healthier and wiht a positive attitude going into the surgery..
...I also very much respect everyone choice of treatment and journey just wanted to offer up this perspective

Maria