Aa
Today's Dr. Visit
Okay, I went to see the GI dr. for my biopsy results.
Stage 4 Cirrhosis
Geno type 1
When i first had my blood work done the alphafetoprotein (tumor marker) was high. So he sent me to have a 3 phase CT scan right away and the results of that test showed no tumor. So now he wants to hold off on treatment to make sure there is not a tumor "brewing" inside and just not showing yet. He said for me to go have my blood work completed again in four weeks and again in four weeks to see what it looks like (so basically two more months) He is also performing a "Endoscopy"
He also said that my liver is functioning normally and is doing everything it's suppose to be doing. He said that basically the hep c has done all the damage it could to my liver so prolonging treatment for a couple of months is not going to hurt for now. He also stated that sometimes persons with stage 4 can not endure treatment but that we will try and it would have to be the 48 weeks.
I am thinking that i need to see a Hepatologist for a second opionion regarding the hep C ????
Stage 4 Cirrhosis
Geno type 1
When i first had my blood work done the alphafetoprotein (tumor marker) was high. So he sent me to have a 3 phase CT scan right away and the results of that test showed no tumor. So now he wants to hold off on treatment to make sure there is not a tumor "brewing" inside and just not showing yet. He said for me to go have my blood work completed again in four weeks and again in four weeks to see what it looks like (so basically two more months) He is also performing a "Endoscopy"
He also said that my liver is functioning normally and is doing everything it's suppose to be doing. He said that basically the hep c has done all the damage it could to my liver so prolonging treatment for a couple of months is not going to hurt for now. He also stated that sometimes persons with stage 4 can not endure treatment but that we will try and it would have to be the 48 weeks.
I am thinking that i need to see a Hepatologist for a second opionion regarding the hep C ????
SVR stands for Sustained Virological Response means no detectable virus in your blood for six months after finishing treatment
Here is a list of abbreviations we use. They really save time
http://www.medhelp.org/health_pages/Hepatitis/Hepatitis-C-Acronyms-Abbreviations/show/3?cid=64
http://hepatitis.about.com/od/treatment/f/SVR.htm
Here is a list of abbreviations we use. They really save time
http://www.medhelp.org/health_pages/Hepatitis/Hepatitis-C-Acronyms-Abbreviations/show/3?cid=64
http://hepatitis.about.com/od/treatment/f/SVR.htm
Ditto all the above. With your stage 4, you need monitoring by a hep dr. Will your insurance cover it? I'm stage 4 too and was denied tx because of decompensated liver. I went to the bottom so fast.
I did treat eventually and am 9 mos SVR. Best of luck to you. It's great that your liver is still supporting you. Take advantage of that and eat well. xo Karen:)
I did treat eventually and am 9 mos SVR. Best of luck to you. It's great that your liver is still supporting you. Take advantage of that and eat well. xo Karen:)
WOW, first of all i was so happy to see your name on my comments list. A lot of people have mentioned your name in this forum as I keep reading. I have learned so much and sure I am going learn a lot more. Hector, i do not know half the words they are using right now. I am so overwhelmed. I try and make my blogs short so people can read but I guess I need to be more detailed because I have so many questions. I know that we should not be afraid to ask lots of questions at the dr.'s office but sometimes they act like they don't have the time and minimize what you are feeling. I didn't understand half the words he was saying and was numb. So now that my mind is back in it's place this is where i'm at.
07 had a biopsy with results of "low grade inflamation as well as some firosis with no evidence of cirrhosis" this is what the letter they sent me stated. Yesterday the an associate in the same office states that it was "stage 2" (is that the same thing but in different words?)
okay, so since Feb this year. Went to have my normal physical and of course my hep c was going to show and had already decided that I was going to follow through this time to see the "treatment specialist" who i guess is just another GI. Back in 07 another GI sent me to an associate in the same office to talk about treatment but never followed through. So every year after that i just brushed it off. So this is where I'm at now.
Since i have started with this GI. He sent me to have blood work completed and scheduled me to have my biopsy. When blood work came back the "tumor marker" came back at 126 so he scheduled the CT with results of:
The liver is cirrhotic in morphology with nodular anterior surface. There is no abnormal arterial enhancement. There is minamal gallbladder wall thickening. The spleen is mildly enlarged measuring 14.2 cm. Mild persplenic and gastrohepatic varcies are noted. The hapatic and portal veins are patent. Promeinent periportal lymph nodes are seen. Standard hepatic arterial anatomy is noted. The adrenals, kidneys, and pancreas are unremarkable. The visualized bowel is normal in caliber and wasll thickness. No free fluid or inammatory changes are seen. No destructive osseous lesions identified.
Impression: Cirrhosis with sequlae of protal yhpertension. No arterial enhancing hepatic lesion to sugeest HCC. (what is HCC stand for?)
Results of biopsy:
Chronic protal hepatitis compatible with hep c virus (HCV) Etiology, displaying moderate limiting plate necrosis (inerface Hepatitus) and lobular inflammatory activity (inflammatory Grade 3/4) mild hepatocellular fatty and ballooning change (brundt grade 1/3) and micronodular cirrhosis (fibrosis stage 4/4) iron staining is not increased (grade 0: Range grade 0-4)
Comments: In addition to chronic Hep C virus changes, there also appears to be evidence of mild steatohepatitus., with it's usual etiologies to include insulin resistance. #%* #*% #%* (lots of reasons) As well, it also must be noted that hepatitus that hep C itself may lead to insulin resistance in some patients and, thus, may also be a direct cause of nonalcoholic fatty liver disease (NaSH). Careful correlation and continued follow-up, as indicated, are recommended.
US abdomen results:
Findings: There is no liver mass. Normal spleen. No shadowing gallstone or gallbladder wall thickening. No biliary tract dilaiton. Common duct 3 mm. The visualized pancreas is normal. Right kidney 11.4 cm and the left 11.8. No hydronephrosis, mas or stone. Normal bladder. nor freee fluid. the aorta and IVC are unremarkable. (what do they mean by unremarkable)
So this lead up to my short story of my Dr. Visit yesterday.
Thank you Hector so much! I see that you have eased the minds of so many on this forum even if it what we don't want to hear. But at least we can understand what is going on with us.
07 had a biopsy with results of "low grade inflamation as well as some firosis with no evidence of cirrhosis" this is what the letter they sent me stated. Yesterday the an associate in the same office states that it was "stage 2" (is that the same thing but in different words?)
okay, so since Feb this year. Went to have my normal physical and of course my hep c was going to show and had already decided that I was going to follow through this time to see the "treatment specialist" who i guess is just another GI. Back in 07 another GI sent me to an associate in the same office to talk about treatment but never followed through. So every year after that i just brushed it off. So this is where I'm at now.
Since i have started with this GI. He sent me to have blood work completed and scheduled me to have my biopsy. When blood work came back the "tumor marker" came back at 126 so he scheduled the CT with results of:
The liver is cirrhotic in morphology with nodular anterior surface. There is no abnormal arterial enhancement. There is minamal gallbladder wall thickening. The spleen is mildly enlarged measuring 14.2 cm. Mild persplenic and gastrohepatic varcies are noted. The hapatic and portal veins are patent. Promeinent periportal lymph nodes are seen. Standard hepatic arterial anatomy is noted. The adrenals, kidneys, and pancreas are unremarkable. The visualized bowel is normal in caliber and wasll thickness. No free fluid or inammatory changes are seen. No destructive osseous lesions identified.
Impression: Cirrhosis with sequlae of protal yhpertension. No arterial enhancing hepatic lesion to sugeest HCC. (what is HCC stand for?)
Results of biopsy:
Chronic protal hepatitis compatible with hep c virus (HCV) Etiology, displaying moderate limiting plate necrosis (inerface Hepatitus) and lobular inflammatory activity (inflammatory Grade 3/4) mild hepatocellular fatty and ballooning change (brundt grade 1/3) and micronodular cirrhosis (fibrosis stage 4/4) iron staining is not increased (grade 0: Range grade 0-4)
Comments: In addition to chronic Hep C virus changes, there also appears to be evidence of mild steatohepatitus., with it's usual etiologies to include insulin resistance. #%* #*% #%* (lots of reasons) As well, it also must be noted that hepatitus that hep C itself may lead to insulin resistance in some patients and, thus, may also be a direct cause of nonalcoholic fatty liver disease (NaSH). Careful correlation and continued follow-up, as indicated, are recommended.
US abdomen results:
Findings: There is no liver mass. Normal spleen. No shadowing gallstone or gallbladder wall thickening. No biliary tract dilaiton. Common duct 3 mm. The visualized pancreas is normal. Right kidney 11.4 cm and the left 11.8. No hydronephrosis, mas or stone. Normal bladder. nor freee fluid. the aorta and IVC are unremarkable. (what do they mean by unremarkable)
So this lead up to my short story of my Dr. Visit yesterday.
Thank you Hector so much! I see that you have eased the minds of so many on this forum even if it what we don't want to hear. But at least we can understand what is going on with us.
Stage 4 Cirrhosis
Geno type 1
When i first had my blood work done the alphafetoprotein (tumor marker) was high.
How high is 'HIGH'?
Are you aware that patients with hepatitis C can have AFP numbers in less than 100 that are an indication of liver inflammation not HCC? The classic sign of HCC is an AFP that escalates into the hundreds. Also AFP is not an accurate predictor of HCC (maybe 60%) which is always why it is used in combination with imaging. So there are patients with liver cancer that have no rise in AFP. All tumors much be found using imaging to treat them of course.
'So he sent me to have a 3 phase CT scan right away and the results of that test showed no tumor. So now he wants to hold off on treatment to make sure there is not a tumor "brewing" inside and just not showing yet. He said for me to go have my blood work completed again in four weeks and again in four weeks to see what it looks like (so basically two more months) He is also performing a "Endoscopy"'
HCC takes time to grow. That is why it is normally tested for every 6 months in cirrhotics. When a patient is found to have HCC it is monitored every 3 months.
Endoscopy is used to view varices. These are enlarged veins that reroute blood that can't be filtered through the liver any more, because the liver is too scarred. This is a measure of portal hypertension which helps to indicate how advanced your cirrhosis is. Portal hypertension can also be detected by viewing a patient's platelet count and seeing an enlarged spleen on any imagining scan.
"He also said that my liver is functioning normally and is doing everything it's suppose to be doing. He said that basically the hep c has done all the damage it could to my liver so prolonging treatment for a couple of months is not going to hurt for now. He also stated that sometimes persons with stage 4 can not endure treatment but that we will try and it would have to be the 48 weeks."
As long as your cirrhosis is compensated the liver is able to perform all of its functions. When I patient becomes decompensated that is when the complications of cirrhosis such as ascites, bleeding varices and hepatic encephalopathy occur. At that point you will no longer be able to treat your hepatitis C as your liver disease will be irreversible. Many cirrhotics have side effects and blood abnormalities that make doing treatment for 48 difficult at best. How advanced your cirrhosis is I don't know. How you will handle treatment only by treating will you know. Personally I would not treat without a hepatologist monitoring your condition. In some people treatment can make your liver disease worse. If this should happen you want to know as soon as possible. Also there may be a clinical trial that offers shorter treatment duration and far less side effects.
"I am thinking that i need to see a Hepatologist for a second opionion regarding the hep C ???? "
Yes. If you have cirrhosis you should always have a hepatologist overseeing your care. There are too many reason to state but for one unless your liver imaging is performed by a pathologist that diagnosis and monitors HCC (liver cancer) everyday it can be missed. You don't want that to happen. I have liver cancer and even when managed properly it can be fatal.
Hepatologist are located at liver transplant centers. You need to know the exact status of your liver disease before treating your hepatitis C. Only a liver transplant center can perform the proper tests. No individual GI can do that. And when it comes to HCC a oncologist and radiologist are consulted as part of a 'tumor board' to give their expert opinions on any growths seen of a very high APF. A GI is not trained in cancer and you don't want to trust your life to someone who doesn't work with people with liver cancer on a daily basis. It is more complicated than you can imagine as a person with cirrhosis and HCC has two life-threatening illness.
Best of luck.
Get a refferal to a liver transplant center ASAP. Please do not gamble with your life.
Hector
Geno type 1
When i first had my blood work done the alphafetoprotein (tumor marker) was high.
How high is 'HIGH'?
Are you aware that patients with hepatitis C can have AFP numbers in less than 100 that are an indication of liver inflammation not HCC? The classic sign of HCC is an AFP that escalates into the hundreds. Also AFP is not an accurate predictor of HCC (maybe 60%) which is always why it is used in combination with imaging. So there are patients with liver cancer that have no rise in AFP. All tumors much be found using imaging to treat them of course.
'So he sent me to have a 3 phase CT scan right away and the results of that test showed no tumor. So now he wants to hold off on treatment to make sure there is not a tumor "brewing" inside and just not showing yet. He said for me to go have my blood work completed again in four weeks and again in four weeks to see what it looks like (so basically two more months) He is also performing a "Endoscopy"'
HCC takes time to grow. That is why it is normally tested for every 6 months in cirrhotics. When a patient is found to have HCC it is monitored every 3 months.
Endoscopy is used to view varices. These are enlarged veins that reroute blood that can't be filtered through the liver any more, because the liver is too scarred. This is a measure of portal hypertension which helps to indicate how advanced your cirrhosis is. Portal hypertension can also be detected by viewing a patient's platelet count and seeing an enlarged spleen on any imagining scan.
"He also said that my liver is functioning normally and is doing everything it's suppose to be doing. He said that basically the hep c has done all the damage it could to my liver so prolonging treatment for a couple of months is not going to hurt for now. He also stated that sometimes persons with stage 4 can not endure treatment but that we will try and it would have to be the 48 weeks."
As long as your cirrhosis is compensated the liver is able to perform all of its functions. When I patient becomes decompensated that is when the complications of cirrhosis such as ascites, bleeding varices and hepatic encephalopathy occur. At that point you will no longer be able to treat your hepatitis C as your liver disease will be irreversible. Many cirrhotics have side effects and blood abnormalities that make doing treatment for 48 difficult at best. How advanced your cirrhosis is I don't know. How you will handle treatment only by treating will you know. Personally I would not treat without a hepatologist monitoring your condition. In some people treatment can make your liver disease worse. If this should happen you want to know as soon as possible. Also there may be a clinical trial that offers shorter treatment duration and far less side effects.
"I am thinking that i need to see a Hepatologist for a second opionion regarding the hep C ???? "
Yes. If you have cirrhosis you should always have a hepatologist overseeing your care. There are too many reason to state but for one unless your liver imaging is performed by a pathologist that diagnosis and monitors HCC (liver cancer) everyday it can be missed. You don't want that to happen. I have liver cancer and even when managed properly it can be fatal.
Hepatologist are located at liver transplant centers. You need to know the exact status of your liver disease before treating your hepatitis C. Only a liver transplant center can perform the proper tests. No individual GI can do that. And when it comes to HCC a oncologist and radiologist are consulted as part of a 'tumor board' to give their expert opinions on any growths seen of a very high APF. A GI is not trained in cancer and you don't want to trust your life to someone who doesn't work with people with liver cancer on a daily basis. It is more complicated than you can imagine as a person with cirrhosis and HCC has two life-threatening illness.
Best of luck.
Get a refferal to a liver transplant center ASAP. Please do not gamble with your life.
Hector
I would get a second opinion. It helps to have a choice. To have another set of eyes and hear different treatment options.
If it were me I am thinking I would want to see a Hepatologist. As far as trials go, the clinic where I treated (Alamo Medical Research) has a treatment wing (where I go) and a research wing (where a few people on the forum have participated in trials).
http://www.uthscsa.edu/hscnews/singleformat2.asp?newID=4374
http://www.medhelp.org/posts/Hepatitis-C/diagnosed-with-cirrhosis/show/1683729
http://www.medhelp.org/posts/Hepatitis-C/Cirrhosis-options-for-triple-treatment/show/1796443
I only know about cirrhosis what I learned here on the forum. There is a lot of experience, insight and support here on the forum.
If it were me I am thinking I would want to see a Hepatologist. As far as trials go, the clinic where I treated (Alamo Medical Research) has a treatment wing (where I go) and a research wing (where a few people on the forum have participated in trials).
http://www.uthscsa.edu/hscnews/singleformat2.asp?newID=4374
http://www.medhelp.org/posts/Hepatitis-C/diagnosed-with-cirrhosis/show/1683729
http://www.medhelp.org/posts/Hepatitis-C/Cirrhosis-options-for-triple-treatment/show/1796443
I only know about cirrhosis what I learned here on the forum. There is a lot of experience, insight and support here on the forum.
Well, the Hep C has not done all of the damage it can do. As long as the virus is in your bloodstream, it will continue to damage your liver. However, 2 months is not a long time in the big picture of Hep C and liver damage. I can't really comment on his advice regarding waiting to see if a tumor is brewing. He is right that treatment is hard for people with Cirrhosis and can sometimes cause the liver to fail. On the other hand, it sounds lime your liver is "compensated" or still working well and doing it's job. I believe a hepatologist would advise you to treat as soon as possible, but there are various tests and insurance approvals that take time, so it could be a couple of months before you can treat anyway. However since you have Cirrhosis, your case and your Hep C treatment should be managed by a hepatologist anyway. Sort of a jumbled answer, but I think if I were you I would proceed with the gastroenterologist, the follow up lab work, the endoscopy, and the follow up imaging, but in the meantime find a hepatologist (usually found in a research based university medical center) and schedule an appointment. That way, by the time you get in, those follow up results will be available.
Advocate1955
Advocate1955
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