Miss Diagnosis: Radiation? Where did this come from?

Monday, March 23, 2009

Radiation? Where did this come from?

I will never get used to e-mails from doctors. Somehow it's just seems wrong to find life altering information waiting between the Viagra ads and lottery winner notifications in my inbox. Last week I heard from Dr. McC and forwarded the message (see my last post) to Dr. Friedman, today I received his response to it.

Interesting
I would vote for repeat pit surgery, if its not too late, if she goes for bla, I would probably do radiation therapy to those spots

How do I respond to this one? I was feeling quite comfortable with my decision; now I'm second guessing again. What is he thinking here? Is he considering this a fast growing tumor? I thought those were the only ones that needed radiation. Guess it's time to do some more research on that. At this point I suppose I should think about the very real possibility that although we are looking at a 99% cure rate from Cushing's with BLA, it doesn't mean the war is over.

The headaches are back. That's a biggy for me. If only we could tell whether the cause of the headaches is fluctuating cortisol levels or "mass effect" of the tumor. All the docs have told me that a little tumor like these are couldn't be causing the headaches, only the cortisol issues could do that. Still I wonder. I will be kicking myself if we do the BLA and the headaches stay. How hard will it be to convince the neurosurgeon to go back in then?

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Transphenoidal Pituitary Surgery- From the UCSF web site

What happens during surgery?
The surgical removal of the pituitary adenoma is performed by a technique called a transsphenoidal operation. The word 'transsphenoidal' describes the path the surgeon follows to reach the pituitary gland. The word comes from 'trans', meaning 'to cross or pass through', and 'sphenoid', the name of the cavity (the sphenoid sinus) that is passed through to reach the pituitary gland. Newer techniques and improvements in technology now allow removal of these tumors without the need for an incision under the lip or within the nostril. The surgeon begins the approach by entering through the nostril on one side. The surgeon uses a brilliant fiber optic light to illuminate the internal anatomy, a microscope to magnify the area of surgery to 12 times the actual size, and very tiny microsurgical instruments especially designed for this particular operation. The surgeon guides the surgical instrument into the nasal cavity and an opening is made in the sphenoid bone. The sphenoid sinus is entered, and then an opening is made in the wall of the sella turcica to expose the pituitary gland. The adenoma can be readily distinguished from the normal pituitary gland tissue and is removed without removing the normal gland. After the surgeon removes all the tumor tissue, the small cavity that is left is treated with alcohol to destroy any tumor cells that may remain. This cavity is then sealed, sometimes with a piece of fat that the surgeon removes from the patient's abdomen. The surgeon then applies a biological 'glue' that helps seal the pituitary area from the nose and promotes natural healing. No nasal packs are used with this approach.