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

[jmjm530]

Here's a good partial list of top docs in the USA.

Ira Jacobson, NYC
Douglas Dieterich, NYC
Nezam Afdhal, Boston
Eugene Schiff, Miami
John Mchutchison, North Carolina
Donald Jensen, Chicago

[mh9301]

Thanks for the lead.  His doctors have not even mentoned a liver transplant.  This is really good data.  May I ask, what your course of treatment was?

[IAmTheWalrus]

CORRECTION: First line should read "...tumor that was deemed unresectable, mainly..."

Sorry

[IAmTheWalrus]

I had a HCC diagnosis with a tumor that was deemed mainly due to the location of the tumor very near the inferior vena cava and complicated by cirrhosis. I was 54 and in good health at the time. Some of these same conditions combined with age COULD be reason your father is considered unresectable.

Maybe transplant is an option also. Most of the recent study on transplant in the elderly that I am aware of indicates that age alone is not a factor in survival of transplant. If he is in good health otherwise, he might be a candidate. You may find the following excerpt from a recent atricle interesting.
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http://www.medicalnewstoday.com/articles/80060.php

"Gerald S. Lipshutz, M.D., M.S., David Geffen School of Medicine at UCLA, and team examined the records of patients who had received their first liver transplant between the years 1988-2005. 62 patients over 70 were compared to 864 aged 50-59. Survival time was measured until death, the last known follow-up or retransplantation.

During the study period, exactly half (31) of the 62 patients over 70 died, compared to 345 of the 864 patients aged 50-59. A year later 73.3% of the older patients and 79.4% of the younger ones survived. Ten years later 39.7% of the over 70s and 45.2% of the younger ones were still living.

"We found no statistically significant difference in survival in the first 10 years after transplantation for a group of 62 patients 70 years or older when compared with a younger cohort of 864 recipients aged 50 to 59 years with similar characteristics. The longest-surviving patient was 88 years old at 15 years after transplantation. One-year unadjusted survival of septuagenarians in the most recent surgical period, 2001 to 2005, was 94.4 percent," the researchers said."
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"The researchers conclude "In conclusion, biological and physiological variables may play a more important role than advanced age in predicting poor survival after liver transplantation. Measures of physiological age and risk of complications should be used in the evaluation process of elderly transplant candidates. Age by itself should not be used to limit liver transplantation."

[Texas714]

As far as the maintance treatment goes...I don't think they do that any more.  My doctor told me as the others have said, it doesn't work.  The 2nd opion is a good thing.  And being from Texas, I've always heard that MD Anderson is one of the best for anything to do with cancer.
Good Luck to you and your family.

[mh9301]

Thank you all for the info.  I will start researching these docs and see what we come up with.  
In regards to deeming him inoperable may it have something to do with his age (73)??? His ast/alt, albumin, bilirubin are normal except for hemoglobin 11.5 and platelets 117 He really has no other medical problem except gallstones, not even high blood pressure .  
But he is 73 still in their eyes.
The treatment they did mention was TACE. which did not seem too promising from the quick research I did online.

Thanks again to all of you. This is a great site I just stumbled on.  I don't really know how to use it effectively quite yet .

[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 CT scans every 3 months (took a little cajoling, but docs and insurance finally capitulated).  Not knowing the specifics of your father's condition and why his doctors deemed him 'unresectable' (inoperable), I can't suggest any relevant options, but feel free to pm me if you'd like.  My prayers to you and your family.

~eureka

[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.

[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

[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.

[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.

[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.

[marsfreek]

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