Carol, I have been where you are...that underlying fear that time will run out before anything is done. I was diagnosed with HCC in '05 and learned it was taking up the entire rt. lobe and had metastasized into the inferior vena cava, but I didn't have the rt. lobe removed until '07. A part of this delay was because I wasted some months at Shands...appointments were few and far between and I never got past the GI doc...who finally told me that there was nothing that could be done for me.
I felt like I had a ticking time bomb in me and time was running out. With Mayo, you don't need a referral. You can request an appt. online, which is what I did. I was first seen in financial eval. and then by an oncologist. All the blood work, scans, etc., that I'd already had done were repeated. That's how Mayo works. They want up-to-date records, meaning in the past week (for blood work) or month (for scans.) I was finally referred to a hepatologist, but saw a different one than I was referred to at first. With a metastasis, transplant was never discussed, nor was a MELD score.
Then I met with a surgeon. He explained chemoembolization and also said that there was a new study drug becoming available (TheraSphere.) I saw the Interventional Radiologist the same day...who explained that he would put me on the list, but that Mayo Jax was still seeking approval to use this drug. A book full of papers to sign and more waiting. There was delay after delay--and I was worried that I may run out of time before the drug could finally be given. I had chemoembolization meanwhile. Several months later, I got the TheraSphere. I had asked about transplant then...when the tumor had shrunk and there was no metastasis. But they felt the best plan was to remove the rt. lobe after the tumor had shrunk more. It was several months more before surgery to remove my rt. lobe. By that time, I had ascites and lower extremity edema (LEE) in a big way. They put me on diuretics, but I was never drained...except once when a drain clogged after hernia surgery and they had to drain out the residual fluid and insert a new drain. I'm still on diuretics twice a week, but the ascites has resolved and the meds keep the puffiness at bay.
Since I still have hep C and the most effective way to stop cancer from returning is hep C treatment...I am hoping I can tolerate the new one. The fact that it only has to be taken for 24 wks. is a big incentive for me. That and the 75% clearance rate for those with genotypes 1a and 1b (most of the population with hep C in the USA.)
I get blood work, an MRI with Gadolinium, and a follow-up with my hepatologist or her ARNP every 6 months. So far, so good...coming up on 4 years cancer-free. But I'm always aware that it could return or that my liver could decompensate.
After Mike has transplant (and I pray he will soon), they will probably see how his liver does. As you may know, getting a transplant does not rid one of hep C...it's still in the blood. If hep C starts raising the liver enzymes and other values, he will have to take hep C treatment (as David is doing now.) I've been told that they now have medications to deal with various side effects of treatment.
Mayo never told me my MELD, but I calculate it myself here:
After my last labs in late Sept. '10, I found it was an 8. It had previously been a 7.
Of course, during all of this and for years before diagnosis, I never drank. I had also given up smoking and during the cancer phase changed my diet. I believe all of these factors contribute to how well I've done. However, the fatigue gets worse every year and lately it seems to get worse every couple of months.
The thing you need to take away from my story is that there is HOPE. It's natural to want to rush things along, and you can do whatever you can to accomplish this. But at some point you have to let go and let God...give it all over to your HP and have faith in a favorable outcome. Stay positive! I think my positive attitude, despite the underlying concerns, played a valuable part in the outcome I had.
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"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland
Post Edited (hep93) : 2/26/2011 2:27:50 PM (GMT-7)