I got a call yesterday from the endocrinologist's fellow. They took some blood while I was there last Wednesday to run their own hormone level tests and got the results this week. My prolactin levels were normal as were all other hormone levels. This was before I started taking the Dostinex (drug to lower prolactin levels if this were a prolactinoma). So that pretty much rules out the possibility of a prolactinoma, and they think it is most likely a breast cancer met. It could still be a non-secreting benign adenoma, but there is no way to know without having the surgery. I think they are leaning towards met because it seems to be shrinking and growing, possibly due to chemo (though chemo is not thought to cross the blood/brain barrier??). The endocrinologist doesn't think I need to have the surgery right away since I'm not having any symptoms (blurry vision, severe headaches or wacky hormone levels). He wants to see me in 6 months. The neurosurgeon wants to see me next week and wants me to meet with a radiation oncologist. I suspect he will recommend having the surgery now that a prolactinoma has been ruled out. I'm not sure why he wants me to see the radiation oncologist, but I guess I'll find out next Wednesday. I'm waiting for a call back from my medical oncologist to get his opinion, but I know that he does not think this is a breast cancer met. So he'll probably recommend against having the surgery. I don't know what to think, but I will wait to get all the opinions before making a decision.
In other news, I had treatment #2 on Monday. This round has been a bit easier with the fatigue and less grogginess, but the nausea is back, though not too badly. Steroids kept me up most of Sunday night, but I've managed to make up for most of that sleep over the past two nights. I lost huge hunks of hair in the shower on Saturday, so I'm back to the bald look:
It's not so much fun being bald in the middle of winter in Chicago. Temps today started at 2F with a wind chill of -19F! Currently it's up to 11F with a wind chill of -4F. So I have to wear a hat at all times, even while sleeping, but I do save time in the shower and after with no hair to wash/condition/dry/style :)
For now, we are going to sit tight and wait for all the opinions to come in on the pituitary tumor. It seems that the surgery is inevitable, but I don't want to rush into it and compromise the systemic treatment for the liver tumor, which I feel is a bigger threat to my health at this point. The surgery is "minimally invasive", but it's still brain surgery! We'll post another update once I get through all the doctor's appointments next week. Thank you all so much for all the support ... it really helps to know so many people are thinking of me and praying for me!
6 comments:
Wow, lots of different opinions to consider. We think, talk and pray for you every day.
Good luck and lots of love to you, Alan, Ben & Sam,
Bill & Meg
So much information to juggle and such big decisions to make. We pray for you daily as do many members of our Sunday School class.
Your attitude and sense of humor are amazing.
Let's chat soon.
Shelby
So awesome to see you thinking about the bright side (no washing/conditioning/styling of hair) in light of all this uncertainty! Keep it up!
I hope the docs come to some sort of agreement on this, but it sounds like you have a pretty good plan of action regardless of whether they agree with each other or not. We have been cold here in Georgia. I cannot imagine those temps though. Is it snowy all winter long or off and on?
We definitely keep you and your family in our prayers.
It's been a long time since I stopped by, but I must say that you look fahhhbulous bald. Seriously! Not many people could pull that off. You have a great facial structure that is highlighted with no hair to distract you.
I'm going to work my way backwards to see what's up, but just wanted to say hi again, and apologize for my long absence.
Post a Comment