Hep C and possibly liver cancer

[Lullabie]

I was diagnosed with Hep C on April 8 2019.  I have gone through the lengthy process of waiting for a May 14th appointment with a Hematologist (Hep MD) who reviewed my blood tests and rescheduled another appointment for July 29, 2019 following a abdominal Ultrasound.  The Abdominal Ultrasound was on July 8.  That's three months from diagnosis to the ultrasound and another three weeks for another appt with the Hematologist.  Thank you for letting me get this out of my system.  I have no friends or family that are aware of my situation yet.

What is bothering me today is my review of the ultrasound screen.  She had several pictures including other organs.  One stuck out as it had colorful marks on it.  I looked it up on the internet and found it indicated secondary cancer.  I have to wait another two and one half weeks for an explanation but I'm really upset. 

Can anyone else share a story about the discovery and time process in dealing with the wait and lack of information surrounding this disease.  I'm already planning what to do with my dogs.

[Lynn K]

There is one way they examine the liver using Doppler to determine the direction of blood flow which causes bright colors to be displayed on the screen. Unless you are trained in interpretation of ultrasound I’m going to hazard a guess you are not correct in your assumption about liver cancer. First of all most people who develop liver cancer have liver cirrhosis. Simply having hep c does not cause liver cancer. I would wait until you hear from your doctor before jumping to conclusions about what you saw during your ultrasound.

I’m most cases it takes decades of infection with hep c to develop liver cirrhosis. Only about 20% of patients infected for 20 years will develop liver cirrhosis meaning the 80% of people infected for 20 years will not develop advanced liver disease in that time. I had hep c for 30 years before I was diagnosed with liver cirrhosis using liver biopsy. That was back in January 2008 so I have been living with liver cirrhosis for 11 and a half years now.

You said hematologist this would be a doctor who specializes in blood diseases. Are you maybe seeing a hepatologist? Hepa refers to the liver like hepatitis means liver inflammation. You could see several types of specialists to treat hepatitis C. You could see a gastroenterologist a doctor who specializes in all things in tha abdomen, or you could see an infectious disease specialist, or you could be followed by a liver specialist a hepatologist.

Have you been diagnosed with cirrhosis? Have you had a liver biopsy or a Fibroscan test or fibrosure blood test? These tests are the ones used to diagnose liver cirrhosis. Have you had an AFP blood test. The AFP can indicate possible liver cancer. Do you know your platelet count? A low platelet count is one of the common first indication of liver cirrhosis.

I’m thinking you are still very early in the diagnosis process. When you see your specialist you will have more answers about where you stand.

Let me know if you have any more questions. Best of luck

[Lullabie]

Thank you so much for your comments and explaining the process to me.  I looked the doctor up, she is a Gastroenterologist, graduated medical school from Harvard with honors.  She has impressive credentials.  I feel a little better.  I have had so many blood tests I don't know what they are all for.  I only know my type is 1A, my Viral Load is 7,120,000.  I was likely exposed over 50 yrs ago. My list of things I don't know is Degree of Liver Damage and on July 29th I should start medication.  As you likely know, this is very difficult to go through, but people like you make it less lonely and bring some sense to my situation.   Thank you.  I should know more by end of month.

[Lynn K]

Most of us have either physical copies or online access to our lab tests. If you could get copies we would be happy to review some of your results with you.

I was also genotype 1a you can see in my signature I treated three separate times in the past with the old interferon based treatments. This involved self injecting with interferon either 3 times weekly or with the later version of interferon once a week along with additional meds than made you feel like you had the flu achy and run down for the duration of treatment which was 6 months long. For us with genotype 1a those treatments were only about 30% or less effective. Today we live in a new age of treatment. These new meds are very effective and for most people have minimal side effects the most common being occasional mild headaches.

You will know soon where you stand the waiting is the hardest part of all this. You have had hep c for a while now a few more days won’t make any difference medically. I’m sure if they did see something of concern they would get you in sooner

Best of luck