It’s back :-/
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Nat,
i agree with some of the others – you really need to get a second opinion. I have been told by the experts (at MD Anderson – who treat more of this cancer than anyone else), that CC does not show up well on PET scans.
Since you are in Oklahoma, if its possible you should try to see the doctors at MD Anderson in Houston. They are incredibly knowledgeable. If you need any help just contact me through email or you can text – 954-401-1069.
tom
Not knowing is the worst. There is so little they know about cc compared to other cancers.
Prayers and support coming your way! hopefully you’re able to update us with good news soon.
Nat……you would want to “absolutely” rule out a recurrence of this cancer. I agree with the others, a center with a high volume of Cholangiocarcinoma patients is likely to have the expert physicians “very” familiar with this cancer.
Hugs,
MarionNat, again, I really believe with all my heart that you need a 2nd opinion. I forgot where you are being treated?
I’ve had a CT scan, a MRI and a PET scan… They were saying it was cancer until it didn’t light up on the PET.
Nat,
That is so frustrating. I feel really bad for you. No way can you sit around and wait three months. That would drive anyone crazy.
As Lainy said, a second opinion might be wise at this time. Just so you’re sure what the outcome is.
Good luck and please let us know what happens.
You’re in my prayers.
Peace,
MaryWell it’s just so confusing because at first it was cancer and now they are saying they don’t think it is… So it’s like is or isn’t it?! And what are y’all gonna do to determine whether it is or not?!
My surgeon is calling my oncologist today so they can “discuss” everything BUT I’m going to push for them to at least do a biopsy… I feel like waiting 3 months to get another MRI isn’t an option! There was obviously a reason why they initially said it was a tumor so I can’t spend the next three months paranoid that this cancer is living and growing!! Hopefully we will have answers soon!
This is good news Nat. My Teddy had Cyber Knife, a real miracle for us! I love it when we get options and you have options. That is good news. I think T had 4 treatments in one week and that was it! Best of luck.
Well I am feeling much better after meeting with my oncologist. He feels very positive about everything. The first step is I will meet with my surgeon next week to see if he feels comfortable just going in and removing then following up with aggressive chemo but if he isn’t comfortable with doing the surgery we still have the option of doing several treatments of cyber knife combined with chemo. I feel like we are definitely moving in the right direction and I have 100% confidence in my Drs and in myself!
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