best clinics / doctors in US

[mh9301]

My father was recently diagnosed with HCC (1.6cm) .  He has been on maintenance interferon injections for HCV for the last three or four years.  CT/MRI every 6-8months.  They have been "watching" a .6cm "nodule" forever.  Just last week after his scheduled CT scan they found it grew rapidly to 1.6cm and diagnosed him with HCC and stated it was inoperable.( not sure why.)  So we would like to get a second opinion, just not sure where.  I have heard good things about MD Anderson but not specifically related to HCC.  ANY info would be extremely helpful and so very much appreciated. I have been trying to research online but can't find much regarding the best place for possible surgery.


Also does anyone know of the possibility of this " rapid growth" occurirng because he skipped his weekly injection for 4 weeks. Just a thought.  also, his AFP is 9

[marsfreek]

you nead to get in to see Dr. Galati at texas liver specialists.he is good, I hope this helps

[HCA]

If it gives you any comfort skipping the maintenance dose almost certainly had nothing to do with it.The incidence of HCC among maintainence patients in the recent Halt-C long term trials was the same as in the contol group who had hep c but were not on maintainence therapy.
Best wishes.

[FrontRangeMom]

Data presented last year from the HALT-C trial concluded that maintenance doses of Peg-Interferon did not slow disease progression.  I was taken off maintenance.  Your father would probably have progressed to this tage with or without the maintenance therapy, according to the results of that study.

I go to the hepatology group at University of Colorado Hospital.  They are supposed to be among the best in the country.

[copyman]

there is dr reddy at the Univer of Penn in Philadelphia, dr afdhal in boston. you can also go to http://clinicaloptions.com/Hepatitis/Topics/Hepatocellular%20Carcinoma.aspx and find out a lot about HCC. Wishing your dad the best.

[HectorSF]

I am very sorry to hear about your father's illness. Please at least get a second opinion from a good Helpatologist. You want to find out what options are available to him.

Your dad's AFP is 9. So in his case the AFP is not indicating HCC. AFP is not a true measure of HCC. It is only a marker. It suggestive but not diagnostic of HCC. An AFP of 500+ or quickly raising AFP number are what is usually looked for as indication of HCC. Luckily your father is getting his liver scans every cirrhotic should and it could be seen in the scan.

You say his cancer is untreatable but if it hasn't spread outside of the liver HCC could put him near the front of the transplant list. Does your father have a relationship with a nearby transplant center? If not, please speak to the 2nd opinion doctor this.

Tell your father not to worry or blame himself about missing his injection. It had nothing to do with the HCC. As everyone said according to The HALT-C study who's results were released last November, maintenance therapy has no benefit in preventing the rates of HCC unfortunaetly. Talk to your 2nd opinion doctor and he will confirm this. This was big news. Many docs and patients were hoping it might be a way to stop the advancement of fibrosis and the risk of HCC in cirrhotic patients.

"The HALT-C trial unequivocally demonstrated that maintenance therapy with peginterferon does not prevent progression of liver disease among patients who have failed prior treatments," said James Everhart, M.D., project scientist for HALT-C and a program director for the Division of Digestive Diseases and Nutrition, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the principal sponsor of HALT-C at NIH. "These results add to the incentive to develop more effective drugs that will benefit patients with severe liver disease due to hepatitis C."
HALT-C, a randomized multicenter trial of 1,050 patients with chronic hepatitis C who had failed prior treatment to eradicate the infection, assessed whether long-term treatment with peginterferon alfa-2a reduced the development of cirrhosis, liver failure, or liver cancer. The 517 patients randomized to the treatment arm received 90 micrograms of peginterferon in weekly injections for 3.5 years. The 533 patients in the control arm underwent the same follow-up and care as the treated patients including liver biopsies, quarterly clinic visits, and blood tests. All patients had advanced liver fibrosis, a gradual scarring of the liver that puts patients at risk for progressive liver disease.
The outcomes assessed in HALT-C were death, liver cancer, ascites (excess fluid in the abdomen), or encephalopathy (brain and nervous system damage), and for those who did not have cirrhosis initially, the development of cirrhosis. At the end of the study, 34.1 percent of the patients in the treated group and 33.8 percent of the patients in the control group had experienced at least one outcome. Patients in the treated group had significantly lower blood levels of the hepatitis C virus and less liver inflammation. However, there was no major difference in rates of any of the primary outcomes between groups."

Take care and let us know how your dad is doing and what you learn from getting a second opinion. Best of luck to you and your family.
Hector

[Uplink]

I don't know where you are located, but I have heard great things about Dr. Robert Gish at Pacific Medical Center in California. He heads the transplant program there.

[eureka254]

I'm sorry to hear about what you and your father are going through.  I agree that you definitely should seek a second opinion, as well as seek out a transplant center  (large Universities are usually a good bet to have both oncological surgeons and hepatologists).  My husband was diagnosed w/a large HCC (6x12 cm) last Jan, with an AFP level in the thousands, and was initially told that if cirrhosis was confirmed he would not be a candidate for surgery -- but he DID have a liver resection last March w/ a phenomenal oncological surgeon in Connecticut even though he has cirrhosis -- with successful removal of the tumor.  

As far as the quick growth of the tumor (.6 cm to 1.6 cm), it's my understanding that HCC doubling time can be anywhere from 2-12 months (IMHO, pretty fast).  But, what, if I may ask, led your father's doctors to diagnose HCC?  (As Hector mentions above, his AFP is considered "in-range" -- did they do other/more testing?)  In my husband's case, we insist on