Topic: Intro...sorta newly diagnosed
Kelli here, from Antioch, CA. I have been dealing with Carcinoma of Unknown Primary since this last April. After going for a 3rd (and sense then, fourth) opinion with the Dr.'s at Stanford, who are still working on finding what this is, the Stanford Dr's believe with 93% certainty that it's Cholaniocarcinoma.
I'm 42 and a Breast Cancer survivor of 16 years. So when they did a PET scan back in March and found something that appeared in my stomach area, they were surprised (and yeah... me too!!!). I had surgery to remove several lymph nodes that came back adenocarcinoma and they thought they had gotten it all. But a follow-up PET showed it had spread to my liver with a 2.5cm mass in the intrahepatic area (?).
So... the docs at Stanford say I am not a candidate for liver resection at this time, because of it's location (they say it's too close to my heart) and that resecting the liver will not stop it from coming back, and there's no use in "putting me through it".
So now, I'm doing this "global" chemo as my Oncologist calls it, of Taxol and Carboplatin. But from what I'm reading on here, I'm wondering.... is chemo going to work at all? Am I losing my hair for nothing? (silly I know, to worry about my hair, but it's my prize possession!). After losing all of it in 1990 I never cut it again, except to donate to Locks of Love.
I do have just a few of the symptoms for CC. Enlarged liver and dull ache on my right side that's been constant for nearly 2 years. Two years ago, they did an endoscopy and found nothing wrong other than "my bile ducts were backing up into my stomach" caused by stress the doc said.
Is there hope? Is there any recommended alternatives? I know it seems silly to say this, because everyone on here is feeling that same way I have no doubt...... but although I've had a great life, I'd just like a bit more time! Ya know?
I'll go where ever I need to and fight with my insurance. But I feel like I'm punching at air, because I'm so confused on how to help my doctors finally diagnose me and get on with it. I'm ready to fight!!! And after 4 opinions, and two alternative Doctors opinions on top of that..... I'm still so unsure of where to go and what to do.
And after 3 months of seeing this doc and that doc.... I finally decided to do something and that was the chemo. And now????
Input from anyone and everyone would be so greatly appreciated!
I'm so glad I found this website!