Hey WorriedWife,

For me I have no choice. My Doctor stated that Sandostatin wasn't working. He didn't have the IGF results, however, he was confident I needed a second surgeory.

If your young and relatively healthy go for it. The body is resilient. I am still... still recovering from my first surgeory after 7 months ago... I have a few issues (sounds, lights, headaches). I'd rather jump on the second surgeory train right now... Rather than (In my opinion) waste time even years hoping, waiting for drugs to reduce size, inching downward IGF levels.

I have been reading up some some journals regarding second transphenoidal patients, and it doesnt get easier the recovery process, but the results in lowering IGF levels were substantial.

I'm going for my second sometime in the new year... 2012 Baby!

If you know, why didnt they get it during the first surgery? Also, they should bw able to tell you how far into the cavernous sinus it goes, and what are the odds they can get it all out......

Good luck!

Ledgy

Hi Wesley - It must be a guy thing...the readiness to get back in there and slay the dragon (tumor). All your points are valid, but it's still so scary. You are actually lucky that you have no choice.

Ledgy - Apparently, they couldn't see this little flap of tumor that is barely inside the cavernous sinus. I didn't ask exactly how far it extends into it. The surgeon said that if this was the initial MRI that we came to him with, he'd tell us that this is something he can remove and he expects that to be the end of it and levels to normalize. Before the first surgery he told us that he didn't expect a surgical cure. He was, however, shocked once he got in there and thought he got everything.

I'm more confused now than the with the initial diagnosis. A part of me says we didn't come this far to stop now. The other part of me is just tired and overwhelmed.

Hi, sorry you have to deal with this agin, my daqughter who at 26yrs now 30yrs, had first surgery in Australia for a giant macroadenoma, surgeon said in Oz, he got as much out as was possible,he said uk would try and get more, but they wont,he was right, second surgery was unsuccesful, it was in cavernous sinuses,and was aggressive and invasive, but he wanted to try, he said sometimes these fall out like blamanche, but other times they are tough like chewing gum, so you cant pull at them, it wasnt as bad as the first op, my daughter had no problems with this, just a shame it was a tough piece left, she has remnant tumout there, she had radiation treatment straight after, and she is also on Pegvisamont, the tumout has not shrunk much, but it is stable and her IGF is good. I think we done the right thing, going in again, beause if this has worked there would of been no reason to have RT. this was nearly 5 yrs ago now, and things change so quickly, I have read they are not giving RT as quickly as they used too, Good luck,

So sorry about the spelling.

I'm in this boat, too. My surgeons just found a remnant that they missed and was likely also missed by the gamma knife. It's close to the pituitary stalk, and they're sure they can get it with a second surgery. The thing is, there is tumor remnant around my optic nerve that they can't reach anyway (but has been irradiated). Plus, the pegvisomant has normalized my IGF-1. I really don't know what to do...My levels are fine, but if I have to stop the pegvisomant for pregnancy or side effects, or if this remnant grows...

Any thoughts?

It's funny Suzanna, but when it's someone else facing it and I can take the emotions out of it, it becomes so much clearer. I'd tell you to go for it and try surgery again.....I know, I know, easy for me to say.

We've come so far, why stop now, right? I've asked myself all the same questions. What if the meds don't work, what about side effects and what if the tumor grows? I'm so against going the drug route if we don't have to. I feel like his body has gone through enough without pumping meds into it for the rest of his life.

We've decided to do surgery again. My husband says he has to know that he tried everything he could. I'm terrified that we'll go through this again for nothing. I hate this stupid disease!

Speigal - Thanks for your encouraging words.

Hi I hate this disease so much too,its so cruel, my daughters friend has had cancer of the blood,hes been through a lot, chemo and drugs, but now hes back at work and feels great, and says he feels back to normal, my point being my daughter said hes been through all that, and im still battling with this, and im still in pain so fatigued, when is it ever going to end, I know some people we met at Barts have had the same, but they said they feel back to normal, I think its where the tumour is situated, my daughters was also around the optic chiasm, and she also has had RT. I wonder how long one has to be on Pegvisamont, is there a time scale, does anyone know, then do you go on growth hormone injections? Wish you all well

Hello All. Apparently there was a miscommunication with my last visit to Toronto. Without even knowing that my IGF-1 has DROPPED substantially from 938 to 308, Dr. Ezzat told me he was more comfortable going for a second surgical route for the remainder of the Pit Tumor leftover. He said this /all/ with only results from my blood work, like 20 pages alone. So, he may have already known that the IGF dropped alot, however he still wants to get the remainder.

My question is... They want to have their OWN pathology work completed on my Pit Tumor that was frozen back in Winnipeg Health Sciences to be worked on at Toronto University Health Network (UHN). They want to know if my Tumor is also Prolactin producing. They have the reports already from Winnipeg Pathology stating that it the Tumor was limited by its 'degenerative change' and wasnt Prolactin secreting.

It is only a GH secreting tumor leftover. That alone, and my IGF 1 has been lowered on Sandostatin highest level 30 MG after 4 months of shots down to 300 from 938... My question is, why does he believe they need to go back in for a second surgery? The nurses stated that he is only trusting of his own Neurosurgion and they want an MRI completed ASAP.

What is going on here?! I am now more confused than ever. I plan for everything in my life... I HATE being in limbo... Thats all this disease does is plays in limbo. I am a person who likes a solid plan. I only put two and two together until after the appointment that they (Dr. Ezzat and his Staff didnt have my IGF 1 results until after the appointment. During the Appointment he was confident in wanting a second surgery) what am I not understanding, or not being told here?!

Sleepless in Ontario!!!!

Hi Wesley, I love the "sleepless in Ontario" line. I've lost so much sleep over all of this.

Do I understand your last post correctly? Your IGF-1 has dropped in response to the medication you are taking, but the dr. would still like to take out the remaining tumor? If that is right, then it makes sense to me. Go in now and end this once and for all (hopefully), or be guaranteed a lifetime of meds and the possibility of surgery one day anyways, if the tumor grows or the meds stop working. I think it's a "the best defense is a good offense" situation.

All meds have side effects, even if they are minor. Surgery could prevent you dealing with these. Also, meds are expensive. I don't know how the healthcare system works in Canada, but here, even with insurance, we are responsible for a portion of the cost of our medications. God forbid we lose our health insurance. We'd never be able to afford expensive Acro drugs. I've read reports that show that surgery is the least expensive treatment for this condition.

It loooks to me like you have an aggresive doctor. Rather than taking the sit back and wait approach, he's ready to do battle. Now it's up to you to decide if that matches your personality. From you previous posts, I think it does.

My husband's 2nd surgery is in 4 weeks. I'll let you know how things go and maybe that will help you decide.

Speigal - You might want to ask your questions in a separate thread. I don't know anything about RT or meds, but I know several people on the forum have been through it.

Hi Wesley, I love the "sleepless in Ontario" line. I've lost so much sleep over all of this.

Do I understand your last post correctly? Your IGF-1 has dropped in response to the medication you are taking, but the dr. would still like to take out the remaining tumor? If that is right, then it makes sense to me. Go in now and end this once and for all (hopefully), or be guaranteed a lifetime of meds and the possibility of surgery one day anyways, if the tumor grows or the meds stop working. I think it's a "the best defense is a good offense" situation.

All meds have side effects, even if they are minor. Surgery could prevent you dealing with these. Also, meds are expensive. I don't know how the healthcare system works in Canada, but here, even with insurance, we are responsible for a portion of the cost of our medications. God forbid we lose our health insurance. We'd never be able to afford expensive Acro drugs. I've read reports that show that surgery is the least expensive treatment for this condition.

It loooks to me like you have an aggresive doctor. Rather than taking the sit back and wait approach, he's ready to do battle. Now it's up to you to decide if that matches your personality. From you previous posts, I think it does.

My husband's 2nd surgery is in 4 weeks. I'll let you know how things go and maybe that will help you decide.

Speigal - You might want to ask your questions in a separate thread. I don't know anything about RT or meds, but I know several people on the forum have been through it.