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Cushings

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From: MinnieChat

Yes, they do treat you different.
 
If they know you have Cushings before you have surgery, they manage you differently from other pituitary patients with perioperative corticosteriods. Postoperatively, they want to be able to measure what your post-operative steriods levels are, so they know if the removal of the tumor was successful in normalizing your cortisol levels.
 
A post operative cortisol level less than 7.5 has a 90% cure for Cushings. If it had never been determined if you ever had Cushings to begin with, then you would be relying on a pathology lab report to determine if your tumor was hypersecreting acth.
 
Well... so what about the idea that "they are going to take the tumor out anyway, the pathology report will tell us what it is." Yes, I know a few stories where the patient was told they didn't have cushings, only to find out they had an acth secreting tumor removed based on the pathology report. I've also heard nightmare stories from patients who were told that "We don't stain for ACTH, it is too expensive."
 
If you still had symptoms post operatively, THEN the doctor would be left with trying to prove the disease postoperatively. It is harder to prove then because then the cells have to regrow and the disease has to progress to a point where it can be proven biochemically.
 
Since the disease wasn't proven biochemically before surgery, the patients had a really tough time being taken seriously  when it was obvious that their surgery was not successful and they still had residual disease. The challege was that since 'cells' were left behind from their original surgery, those 'cells' had to grow and the disease had to reprogress to a point where the doctors could biochemically prove the disease before anything would be done. One of my doctors told me pitutiary Cushings can take up to 10-12 years before the disease can be biochemically diagnosed.
 
The benefits of proving the disease preoperatively, are that the endocrinologist (1)knows if there is a biochemical cure post operatively, (2) establishes a hormonal replacement protocol postoperatively that is designed to your disease type (3) establishes a testing and follow up protocol that is designed to your disease type (4) works with the patient over the following year as the patient recovers. In addition, if there is not a surgical cure, the endocrinologist can move forward in talking with the patient regarding what the next steps are in regards to achieving disease cure. There is NO waiting for reprogression of the disease because the disease was proven prior to surgery and the doctor knows shortly after surgery if there was surgical cure or not. 
 
In my case, my tumor was in a hard to resect area, and my doctor is reserved in his opinion that I will achieve long term remission from Cushings. I have already been prepared on what the next steps are, if  the disease does come back.
 
Another benefit of proving the disease before surgery, especially since your doctor has clinical suspsecion, is that in the 10-15% chance that "cells" were to be left behind, and if surgery was not successful, you could go directly to the next step of therapy, and not wait year(s) for disease reporgression and have to go through the emotional turmoil of  proving a disease that should have been proven the first place.
 
The benefit of going through the week of protocol testing for Cushings far outweighs the inconvenience. Since you do have a macroadenoma, you will need to have surgery, but the perioperative management and the postoperative management will go better if the doctors know what you have before surgery.
 
You can check out this paper too:
 
Hope this helps.
 
I say... go for it!
lol
 
Minnie

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