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Hep C & 4 cm tumor
Hello - My mother was diagnosed with Hep C 15 years ago and suspects she received it in a blood transfusion during an operation a few years earlier. Her doctor told her it was a very slow progressing form of Hep C so she did not treat it because she would be in her 80s or 90s before it would cause her trouble.
Well, now she is 79 and after weeks of abdominal pain and multiple tests, she finally had a CT scan showing a 4 cm mass on her liver and a needle biopsy is recommended although the doctor said to be prepared for a possible diagnosis of cancer. She is on pain medication and doesn't feel very well so I want to be able to help her.
Can anyone more experienced with Hep C and liver tumor/cancer help answer some questions for me?
- What information should I find out about the type of Hep C she has?
- How can we find out what condition her liver is in now - is there cirrhosis, etc. They mentioned some swelling.
- What kind of doctor should do the biopsy? (Right now, she is supposed to just call the hospital and schedule one)
- What should I find out about what kind of tumor it is?
- Where can we find the names of doctors who are specialist with Hep C and would she see that doctor or an oncologist if it is liver cancer?
- In my city, there are several hematologists that are transplant surgeons. Would they treat her even if she is not likely to have a liver transplant?
It sounds like the current doctor is giving her simplified information but I want to be more proactive. Thanks for any information you may be able to provide - good news or bad news - I feel like I need a fast education.
Well, now she is 79 and after weeks of abdominal pain and multiple tests, she finally had a CT scan showing a 4 cm mass on her liver and a needle biopsy is recommended although the doctor said to be prepared for a possible diagnosis of cancer. She is on pain medication and doesn't feel very well so I want to be able to help her.
Can anyone more experienced with Hep C and liver tumor/cancer help answer some questions for me?
- What information should I find out about the type of Hep C she has?
- How can we find out what condition her liver is in now - is there cirrhosis, etc. They mentioned some swelling.
- What kind of doctor should do the biopsy? (Right now, she is supposed to just call the hospital and schedule one)
- What should I find out about what kind of tumor it is?
- Where can we find the names of doctors who are specialist with Hep C and would she see that doctor or an oncologist if it is liver cancer?
- In my city, there are several hematologists that are transplant surgeons. Would they treat her even if she is not likely to have a liver transplant?
It sounds like the current doctor is giving her simplified information but I want to be more proactive. Thanks for any information you may be able to provide - good news or bad news - I feel like I need a fast education.
flyinlynn has given a good response, Karigra. Basically, you need to find a hepatologist in a liver transplant center, or else a hepatologist who treats HCC.
Your mother can have two samples taken in the same biopsy: a sample of the tumor and a sample of the non-tumor liver tissue to deterrmine the degree off HCV damage. These should be done soon.
If you were in the counry I live in (Argentina), I would recommend you send your mother to the head of liver oncology at the German Hospital. Since you don't live here, you need to find someone in a similar capacity.
Your mother's life can perhaps be saved, but that depemds on her receiving the proper attention at the proper time. If the tumor is not malignant or not too advanced, it can be removed. Her HCV can be cured with the new drugs. But all this must be properly diagnosed and coordinated by the right people. It's up to you to find them.
Good luck.
Your mother can have two samples taken in the same biopsy: a sample of the tumor and a sample of the non-tumor liver tissue to deterrmine the degree off HCV damage. These should be done soon.
If you were in the counry I live in (Argentina), I would recommend you send your mother to the head of liver oncology at the German Hospital. Since you don't live here, you need to find someone in a similar capacity.
Your mother's life can perhaps be saved, but that depemds on her receiving the proper attention at the proper time. If the tumor is not malignant or not too advanced, it can be removed. Her HCV can be cured with the new drugs. But all this must be properly diagnosed and coordinated by the right people. It's up to you to find them.
Good luck.
1 Comments
Thank you, mike716
As it turns out, the liver tumor was the type of cell found in metastatic cancer which isn't unusual, generally speaking, but unusual because she's had Hep C for 15+ years. There is no cirrhosis. Next step is a PET scan to see where the cancer is originating or has spread.
2 Comments
It is stage 4 pancreatic cancer.
I am so sorry to hear that.
She should see a hepatologist (liver specialist) associated with a liver transplant center. They will be able to answer all your questions. A hepatologist associated with a liver transplant center are best equipped to diagnose and follow a patient like your mom. Her current doctor will provide a referral.
There can be liver masses that are harmless. I had 5 liver biopsies over the years prior to my cirrhosis diagnosis in Jan 2008 performed by a gastroenterologist. Even if it is a liver tumor it can be surgically removed under certain circumstances and leave the remaining liver intact.
If she does have HCC the type of hepatitis c is a secondary concern. To determine the genotype of hep c she will need a genotype blood test to determine her genotype.
Treatment for hep c had major changes a couple of years ago. The new medicines can cure the majority of people not previously treated. Treatment could be as simple as 1 pill a day for as few as 8 weeks. But which treatment and duration is determined by a number of factors.
But first it needs to be determined what is going in it's the masses then go forward from there.
There is a lot of good general information about cirrhosis and liver cancer. Try the Mayo Clinic web site also the VA has some good information in layman terms
Best of luck to you both.
There can be liver masses that are harmless. I had 5 liver biopsies over the years prior to my cirrhosis diagnosis in Jan 2008 performed by a gastroenterologist. Even if it is a liver tumor it can be surgically removed under certain circumstances and leave the remaining liver intact.
If she does have HCC the type of hepatitis c is a secondary concern. To determine the genotype of hep c she will need a genotype blood test to determine her genotype.
Treatment for hep c had major changes a couple of years ago. The new medicines can cure the majority of people not previously treated. Treatment could be as simple as 1 pill a day for as few as 8 weeks. But which treatment and duration is determined by a number of factors.
But first it needs to be determined what is going in it's the masses then go forward from there.
There is a lot of good general information about cirrhosis and liver cancer. Try the Mayo Clinic web site also the VA has some good information in layman terms
Best of luck to you both.
7 Comments
flyinlynn, thank you! She has a biopsy scheduled for next week and had A LOT of blood work. Years ago, she did the blood test to determine the genotype so I'll have to get that info. Also, the one pill a day, at $1,000 a pill, would have cost her close to $100,000! She was told about it but did not do it because of the cost. I don't know if that has changed with her insurance plan or not. She has been getting blood work done every three months for diabetes and they include liver enzymes but they were never abnormal so at this point we do not know if she has cirrhosis or not. Thanks for the other sources of info - I'll check into those sites.
Ok so the new meds the $1000.00 a pill meds were only approved in 2014 so she must have been to see a doctor recently. Does she not have insurance? Did she not try to get coverage from her insurance for the meds at the time? Many insurers are now being more liberal approving g treatment. Also there are other ways to get treatment. There are organization that can help in the US. Some have gotten meds from overseas at tremendously reduced cost there are reputable ways to do this.
But of course the first option should be to have your insurance provider do its job.
I had good insurance through my work. The med I was taking was actually $1250 a pill so $37,500 for a one month supply. I treated for 24 weeks because of my prior treatment history and having cirrhosis so the total cost of my treatment was $210,00. I paid $30
Elevated liver enzyme tests or only slightly elevated are not indicative of the extent of liver damage. Elevated liver enzymes only indicate that something is harming your liver. My liver enzymes through my 37 years of being infected were only very slightly above normal but after 30 years of being infected I was diagnosed with liver cirrhosis.
Now even though my hepatitis C is cured and my liver enzyme test have returned to normal I still have advanced liver disease and am living with liver cirrhosis.
When she has her liver biopsy this will tell you whether she has liver damage or liver cirrhosis along with looking at the mass that is in her liver.
Only then will you know what you are dealing with.
But of course the first option should be to have your insurance provider do its job.
I had good insurance through my work. The med I was taking was actually $1250 a pill so $37,500 for a one month supply. I treated for 24 weeks because of my prior treatment history and having cirrhosis so the total cost of my treatment was $210,00. I paid $30
Elevated liver enzyme tests or only slightly elevated are not indicative of the extent of liver damage. Elevated liver enzymes only indicate that something is harming your liver. My liver enzymes through my 37 years of being infected were only very slightly above normal but after 30 years of being infected I was diagnosed with liver cirrhosis.
Now even though my hepatitis C is cured and my liver enzyme test have returned to normal I still have advanced liver disease and am living with liver cirrhosis.
When she has her liver biopsy this will tell you whether she has liver damage or liver cirrhosis along with looking at the mass that is in her liver.
Only then will you know what you are dealing with.
Oops dropped a zero. My meds cost my insurance $210,000.00 for my 24 weeks of Harvoni. Really, her genotype isn't realm important at the moment some of the drugs treat multiple genotypes. Likely they will retest her genotype or may have already done so on this latest round of bloodwork.
First She has to find out if she has HCC. Unfortunately, some people who treat with the new drugs have the HCC become very aggressive. Your mom needs a liver doctor who can refer her to a very experienced surgeon who has operated on many with HCC. THen she would need someone who understands the possible issues treating patients who have a history of liver cancer, with the new drugs. Let's hope she does not have cancer. I wish your family the best.
I had not heard that myself Clementine02 can you send me a link for that information?
I have seen that for those who previously resolved HCC and treat their Hep C there is currently an ongoing debate among experts in the field if treating with the new DAA's increases the risk of recurrence of HCC. However, opinions are divided among experts and there is data supporting both sides of the discussion.
Does treating Hep c increase the possibility of HCC recurrence or does it not? From all I have read this is still being studied.
I have not seen anything to indicate that treating hep c makes HCC more aggressive only that some experts feel it may increase recurrence.
I have seen that for those who previously resolved HCC and treat their Hep C there is currently an ongoing debate among experts in the field if treating with the new DAA's increases the risk of recurrence of HCC. However, opinions are divided among experts and there is data supporting both sides of the discussion.
Does treating Hep c increase the possibility of HCC recurrence or does it not? From all I have read this is still being studied.
I have not seen anything to indicate that treating hep c makes HCC more aggressive only that some experts feel it may increase recurrence.
Thanks, all. Tomorrow is the needle biopsy. I will be there to ask what I can but it is only an outpatient surgical center for imaging, etc. When we get results, we'll see what type of doctor we are referred to and what the next steps are. Thanks for the well wishes. I'll probably be back here in a few days with more questions.
flyinlynn, here is a link but if you google it, you will find more articles. http://www.targetedonc.com/publications/hcc-monitor/2016/june-2016/direct-acting-antiviral-treatment-linked-with-hcc-recurrence-for-patients-with-hepatitis-c-infection
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