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Author Topic: Hepatitis C, liver cirrhosis, liver tumors  (Read 14657 times)

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Offline tfcarrey

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  • Posts: 3
Hepatitis C, liver cirrhosis, liver tumors
« on: March 30, 2015, 03:23:48 pm »
Hello,

My brother is in his late 60s. Developed liver cirrhosis due to Hepatitis C that was diagnosed around 12 years ago. He has 2 tumors in his liver that are around 2.75in each, so he cannot be accepted for liver transplant.

Around 6 months ago, he had chemoembolization for the 2 small tumors. After that I started to accompany him to his follow-up consultations with his gastroenterologist, because he was getting weaker physically and needed help walking. He cannot go outside by himself now. Also because he doesn't understand English that well (complicated words like cirrhosis, etc). His gastroenterologist told me that he had 2 small tumors and I was shocked, because my brother didn't seem to know (and still doesn't know about his cancer) and didn't tell anyone about it. I asked his gastroenterologist if he could get a liver transplant. 

Consultation with the hepatologist
So 1 month ago, his gastroenterologist had us go consult with a hepatologist and the hepatologist told us that he's not admissible for a liver transplant, because his tumors are larger than the recommended size.
He told us that we could have my brother get treatment for his hepatitis C if his health improve, but I asked how could his health improve if he his getting weaker. Will he die from liver cirrhosis, hepatitis C or his tumors?

Back to his gastroenterologist
We went back to his gastroenterologist and I told him the reason why my brother is not eligible for liver transplant. Then his gastroenterologist basically told us "I thought so, that the tumors were bigger than the recommended size for transplant, but wanted to make sure and wanted you to hear it from the transplant hospital".

I asked his gastroenterologist the following questions:

Q1. Why wasn't he treated for his hepatitis C 12 years ago when it was diagnosed?
A1. "Because the treatment(s) available at the time would have been too harsh on his health".

Q2. Why were his tumors found only when it was 2.75in each? Why weren't they found much earlier, when it was at a much smaller size? Did his tumors grew that fast in size in between MRIs or echography?
(The answer I got for this question wasn't clear at all from his gastroenterologist)
A2. "I'm not sure, of course the tumors could've been found during echography. But we only found the tumors about 18 months ago"

After this answer, I didn't dare to ask further questions, because I was afraid he would felt attacked by my questions, so he said he will ask the radiologist if another chemoembolization would be possible and then the consultation ended and we left.


I still have these questions in my mind that I can't stop thinking of :

1. Why weren't the the tumors found at a much earlier stage?

2. Could his liver tumors had developed from 0 inch to 2.75 inches inbetween MRI?

3. what were the frequency of MRI that was ordered by his gastroenterogolist?

4. If a hepatitis C patient had liver cirrhosis for many many years already, wouldn't his gastroenterologist ask for MRI every 6 months or something to check for tumors?

5. Why did I have to ask his gastroenterologist if my brother could get a liver transplant? Why wasn't he considered for a transplant considering his advanced liver cirrhosis? I mean, why did I have to ask about it myself to his doctor? Why didn't his doctor mention it first?


We have a meeting with his hepatologist soon and I wanted to ask these questions, but I'm not sure what else I could ask. I feel we're letting my brother die (slowly or fast I don't know) from his liver tumors and there's nothing we can do about it. I just wanted to make sure if there was nothing else that could have done better from his gastroenterologist. I feel something is not right, that this gastroenterologist didn't do his job well with my brother. Can anyone comment on this? Thanks for your help.
« Last Edit: March 30, 2015, 03:27:17 pm by tfcarrey »

Offline lporterrn

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    • LucindaPorterRN
Re: Hepatitis C, liver cirrhosis, liver tumors
« Reply #1 on: March 30, 2015, 06:35:14 pm »
Hi,
I am sorry about this. This is hard stuff.

You mentioned that your brother had a hard time with English, but you didn't say if he lived in the US and was getting health care here. I mention this because things differ in the world.

Although I can't answer all those questions, I am wondering if they are the right questions. For instance, even if you got an answer to "If a hepatitis C patient had liver cirrhosis for many many years already, wouldn't his gastroenterologist ask for MRI every 6 months or something to check for tumors?" what good would that answer do you?  (The answer is yes, he should have been checked by ultrasound and lab tests.) In short, if there were mistakes, then this won't change things now, and focuses on the past. Yes, you have the right to get to the bottom of this, but maybe looking back is not the best use of your time now. The issues that I'm wondering about are:
  • Can the tumors be shrunk?
    Is he eligible for surgery?
    If not, what is his prognosis?
    If the prognosis is short, what quality of life measure need to be put in place now?

I hope you have support for this process. It is hard. One of Hep's bloggers is going through this, and her latest blog entry may interest you: http://www.ihelpc.com/ethanol-alcohol-ablation-for-hcc/
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline tfcarrey

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  • Posts: 3
Re: Hepatitis C, liver cirrhosis, liver tumors
« Reply #2 on: March 30, 2015, 11:58:38 pm »
Hi Lucinda,

Thank you very much for your reply.

We are in Canada and have lived here for about 30 years. And government healthcare is free.

In a way I agree that the most important thing right now is what else can be done to make his health better so he can live longer, but it’s so just hard to not wonder myself if he was getting the best care he could have.

To answer your questions :

Can the tumors be shrunk?
Last week, when we met with his gastroenterologist, he said he will ask the radiologist if a second chemoembolization can be performed. His hepatologist said he could prescribe treatment for his hepatitis C if his gastroenterologist wouldn't and if his health gets a little better, he also said that new treatment wouldn't have severe side effects. But I wonder, if we cure him of his hepatitis C, wouldn't he still die from his tumors?

Is he eligible for surgery?
I will ask his hepatologist tomorrow morning when we consult with him again, but I doubt it, because the hepatologist said his current health was very weak (when we met with him last week).

If not, what is his prognosis?
His hepatologist said less than a year, but he also said that it is just statistic and he’s not exactly sure.
We met with his gastroenterologist last week and he said it’s a matter of months, but 2 months ago on our last consultation, he had said not to worry, that we’ll meet with him for a few more years. I think it was to not worry us (like a white lie?).

If the prognosis is short, what quality of life measure need to be put in place now?
I don’t quite understand the question, but I would say that right now, his wife is taking care of him, because he moves very slowly and sleeps quite easily when he’s sitting down. His hands are getting shakier every month. I drive him to all his appointments at the hospitals. His wife is hearing impaired and they both don’t have a drive license.

His wife and himself doesn’t know that he has liver tumors. Only my other brother and I knows about it in the family, no one else does. We decided not to tell him and his wife, because we believe they would not be able to cope with it (I’m still not sure if it’s the right decision to hide it from them). His gastroenterologist told him about tumors some time ago, but he didn’t use the word “cancer”. Still, I don’t think my sick brother knows what those tumors are doing to him. I’m not sure he even remembers it.

I have no one else to talk about it so I had to look online for forums.

I will write down your questions and ask the hepatologist tomorrow.

Thank you again.
« Last Edit: March 31, 2015, 12:02:54 am by tfcarrey »

Offline lporterrn

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Re: Hepatitis C, liver cirrhosis, liver tumors
« Reply #3 on: March 31, 2015, 12:31:31 am »
It sounds like your brother is quite sick if he is sleeping easily when he sits. Without knowing his prognosis, it is hard to know if treating hep C would help at this point. That's really a medical decision.

As for your decision to not tell him. I hope you reconsider, or at least keep this option open. I think we do a disservice to our loved ones when they don't have a chance to say their goodbyes and face their last days on their own terms. It is my experience that the dying don't have a hard time with dying - it is the living who do.

I hope you get answers to your questions. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline tfcarrey

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Re: Hepatitis C, liver cirrhosis, liver tumors
« Reply #4 on: March 31, 2015, 11:27:36 pm »
As for your decision to not tell him. I hope you reconsider, or at least keep this option open. I think we do a disservice to our loved ones when they don't have a chance to say their goodbyes and face their last days on their own terms. It is my experience that the dying don't have a hard time with dying - it is the living who do.

Your words means alot. I will think about it. If I was in his place, I think I would like to know so that I can plan the last part of my life, but I'm not exactly sure.


We met with his liver transplant surgeon this morning and this is what he said:
- The tumors are stable in size.
- The tumors are not killing your brother at this stage.
- The Hepatitis C is killing your brother and is still damaging his liver. Right now we cannot do treatment for the tumors unless his liver gets better, because the tumors treatment could kill him.

So the liver surgeon would like to treat his hepatitis C and hope that his liver gets better from cirrhosis then treat the tumors. The liver surgeon seemed to be in shocked when I told him that my brother's gastroenterologist didn't want to do anything about his hepatitis C since there are new treatments available that are not as damaging with side effects as before. Then the liver surgeon called my brother's gastroenterologist at the other hospital and we will meet with his gastroenterologist in 3 weeks from today.

2 weeks before today, we had met with a hepatologist and he said that he could prescribe my brother the hepatitis C treatment if my brother's gastroenterologist didn't want.

When we met with my brother's gastroenterologist last week, I asked him what about new treatment for his hepatitis C? His answer weren't clear, all he asked is if we had private or government medicare. Then I had to ask when will we meet again? He reply "in around 3 months". Then I wondered, why, why are you making me ask for a follow-up, are we just going to meet you every 3 months from now and every meeting will lead to nothing being done?

All this gastroenterologist has been doing is prescribing him 2-3 diuretics to treat his ascites. I'm wondering if he has been watching his tumors grow for the past 6 years, because he had made him do MRI in 2009, 2011 and 2014.

I feel something is wrong. This gastroenterologist has been following my brother for 12 years and I feel he's letting him die from his hepatitis C and cirrhosis and now tumors.

I don't know if I can trust this gastroenterologist anymore, I'm considering to ask the hepatologist to take care of my brother's hepatitis C and cirrhosis. What should I do? Should I ask and go with the hepatologist or keep continue seeing this gastroenterologist? I really need advice.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Hepatitis C, liver cirrhosis, liver tumors
« Reply #5 on: April 01, 2015, 04:28:09 pm »
This is making my head spin, so I can only imagine what it is doing to yours. Although I really don't know enough about all the details, I came to the same conclusion that you are considering - it sounds like the hepatologist is a better choice than the gastroenterologist.

Also, without the GI specialist in the picture, you may be able to get the answers to your other questions that you were unable to get from the GI specialist.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Hepatitis C, liver cirrhosis, liver tumors
« Reply #6 on: April 01, 2015, 04:46:32 pm »
My understanding is that for a person with cirrhosis they need to be under the care of a hepatologist associated with a liver transplant center especially in the setting of decompensated cirrhosis.

A gastroenterologist is a specialist in all things gut related while a hepatologist is primarily concerned with all things liver
« Last Edit: April 01, 2015, 04:48:09 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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