Aa
I just seen my Hepatologist yesterday ,who Came in and Congratulated me on SVR,then turn around and said he wanted to check my AFP.He said it was at 15 and that is a little high...I am asking all my Forum friends to clue me in on what's going on.I was sent down to US right away and Labs When I got home my labs were already sent to My Chart online,I compared them to my others and they all came back good ,but now Im worried about the US.I know that its about looking for tumors. I tried google but I want to hear from experience not google.Thanks in advance for your help.
~Country~
~Country~
Hi country girl I recently dug up some AFP levels taken. My highest AFP level was 969 when I was up at UCSF a few years back ago. I'm sick again this dang disease rearing it's ugly head again. I couln't find my very last AFP test result about a year ago as I remember it certainly wasn't cause for alarm. Seems it's climbing again. Now I'm waiting to hear from imaging for MRI w/contrast. I will keep you all posted.
Date order:
ALPHA 1 FETOPROTEIN
06/17/2005 AFP 3.2
05/15/2007 AFP 66.7
04/26/2010 AFP 427.8
06/01/2010 AFP 636.3
06/07/2010 AFP 832.5
08/05/2010 AFP 857.4
08/11/2011 AFP 404.1
08/18/2010 AFP 688.3
10/12/2010 AFP 274.6
10/11/2010 AFP 57.7
10/24/2010 AFP 44.9
06/16/2011 AFP 523.3
09/13/2011 AFP 492.2
03/04/2013 AFP 195.....has anybody heard a good joke lately? I sure feel like laughing tonight. I'm tired of crying. I know suck it up and put on my big girl pants
Date order:
ALPHA 1 FETOPROTEIN
06/17/2005 AFP 3.2
05/15/2007 AFP 66.7
04/26/2010 AFP 427.8
06/01/2010 AFP 636.3
06/07/2010 AFP 832.5
08/05/2010 AFP 857.4
08/11/2011 AFP 404.1
08/18/2010 AFP 688.3
10/12/2010 AFP 274.6
10/11/2010 AFP 57.7
10/24/2010 AFP 44.9
06/16/2011 AFP 523.3
09/13/2011 AFP 492.2
03/04/2013 AFP 195.....has anybody heard a good joke lately? I sure feel like laughing tonight. I'm tired of crying. I know suck it up and put on my big girl pants
Hi Hector !!!
It is so good to hear from you.Thank you for responding to my post,I now see what you are going thru right now.I hope you get that AFP levels down real soon.I am learning a lot from all of you guys.This is very good information to know about.I miss you and your wealth of info on here.I hope and pray you get to feeling better.
Hugs and Kisses !!!
~Country~
It is so good to hear from you.Thank you for responding to my post,I now see what you are going thru right now.I hope you get that AFP levels down real soon.I am learning a lot from all of you guys.This is very good information to know about.I miss you and your wealth of info on here.I hope and pray you get to feeling better.
Hugs and Kisses !!!
~Country~
COMMUNITY LEADER
Good overview of HCC
Dr. Chris Barry
transplant surgeon at the University of Rochester Medical Center
Liver Transplant for Hepatocellular Carcinoma (HCC)
HCC, or HepatoCellular Carcinoma, is a type of cancer that begins in the liver. People with scarring of their livers (cirrhosis), regardless of the original cause, are at higher risk of developing HCC. People infected with Hepatitis B or Hepatitis C viruses have an even higher risk. Although the presence of active cancer usually precludes the possibility of undergoing a transplant (because the immune suppressing drugs given afterwards can cause a cancer to grow uncontrollably), HCC can potentially be cured with liver transplant, and this is commonly practiced.
There are defined criteria that must be met in order to be considered a good candidate for liver transplant for HCC. These are referred to as the “Milan Criteria” and basically it comes down to if the tumor or tumors are not too large or numerous and they haven’t spread outside of the liver or into the blood vessels of the liver, then transplant is the best option for achieving a complete cure. Specifically, if there is one tumor, it can’t be greater than 5 centimeters (2 inches), and if there are multiple tumors, they can number no more than 3 and each has to be between 2 and 3 centimeters (1 ¼ inch).
When people are placed on the waiting list for liver transplant, where you are on the list depends on how sick your liver is. We estimate the function of your liver by calculating your MELD score (Model for End Stage Liver Disease). This score is obtained by a simple blood test in which the bilirubin (the yellow pigment that causes jaundice), the creatinine (a measure of your kidney function), and INR (a measure of how thin your blood is) values are used in a mathematical formula that generates a number between 6 (perfectly normal) and 40 (critically ill). The higher your MELD score, the sicker your liver, and the higher you are on the list.
This allocation system puts people with HCC at a disadvantage because the liver function is often nearly normal when an early HCC is first diagnosed. If a patient had to wait until their MELD score progressed to within the range of receiving organ offers, the HCC may grow or spread while waiting. The United Network of Organ Sharing (UNOS, the national oversight agency for transplantation in the U.S.) allows “exception” MELD points to patients with HCC who are within the Milan Criteria. Upon being placed on the waiting list, the MELD score automatically starts at 22 and increases every 3 months, if still within criteria, additional points are added. Most HCC patients undergoing transplant have “exception” MELD scores of around 30 or higher in large populated centers such as SF, LA & NYC, but their true (or “biologic”) MELD scores are much lower. That means that most HCC patients are not terribly sick or may even feel completely healthy at the time of their transplant.
HCC is almost always diagnosed with a CAT scan or MRI. These imaging studies demonstrate tell-tale characteristics that usually make biopsy of the tumor unnecessary. If there is any doubt, then biopsy will be performed, but this is rare. We often proceed to treatment based solely on imaging studies and other clinical information alone. A blood test called “AFP” (Alpha FetoProtein) is always checked, as it can be elevated in up to 60% of patients with HCC, but it can be normal despite the presence of tumor. Also, the AFP level doesn’t necessarily correlate with how extensive the tumor is, but steadily increasing levels or extremely high levels do raise concern for a more advanced or aggressive tumor.
Once the diagnosis of HCC is made and the patient is deemed to be a good candidate for transplant, the patient is immediately put on the list with exception points and offered treatment to slow down or halt the growth of the tumor while waiting for the MELD points to accrue. If the patient is not a good candidate for transplant because of medical, surgical, or social reasons, HCC treatment will still be offered. If the HCC is discovered too late and the tumor has already spread outside of the liver or into the liver blood vessels, then palliative care or comfort care approaches are considered. Finally, if the HCC is slightly outside of the Milan criteria (for example, 4 tumors instead of 3, or a single tumor measuring 5.5 centimeters), then the possibility exists to try to “downsize” the tumor to get the patient within Milan Criteria so that they can be transplanted.
Two basic approaches to HCC tumor control exist: catheter based “embolization” therapies and directed needle “ablation” therapies. For embolizations, a catheter is placed in the groin and directed into the liver where chemotherapy (“TACE” or TransArterial ChemoEmbolization) or radiation coated glass beads are injected directly into the tumor. Large portions of the liver can be treated at one time with these methods. Tumor ablations are usually performed by placing needles through the skin directly into the tumor to deliver energy (most often radiofrequency waves) that kills the tumor. This is known as “RFA” or RadioFrequency Ablation. These procedures are most always performed by the Interventional Radiologists using conscious sedation and do not require admission to the hospital afterwards. These two approaches are very effective in keeping the HCC in check prior to transplant, but they are not considered curative therapies.
Liver cancer can also be surgically removed. Although the results can be quite good, the recurrence rates can be as high as 50% or greater within 5 years of surgery. With liver transplantation for HCC, survival rates are greater than 80% at 5 years and the recurrence rate is 12% or less at 5 years. These excellent results are achieved because not only is the tumor taken out at the time of transplant, but also the diseased liver that is predisposed to forming tumors. Sometimes surgical removal (or “resection”) is considered if the patient is not a good transplant candidate or, rarely, in order to improve one’s chances for ultimately getting a liver transplant. But the most common course of action, if possible, is to list for transplant, apply for exception points if within the Milan Criteria, and to begin tumor embolization and/or ablation treatment as soon as possible to stay within criteria or to attempt “downsizing” if slightly outside of criteria.
As you can see, treatment decision pathways for HCC are complicated and can vary greatly depending on the individual’s clinical situation. Nonetheless, excellent results can be achieved if the HCC is caught early. A multidisciplinary approach to HCC and transplant involves surgeons, hepatologists, oncologists, interventional radiologists, imaging scientists, pathologists, and nurse coordinators, all of the highest order, working together to deliver state of the art and highly personalized care.
Hector
Dr. Chris Barry
transplant surgeon at the University of Rochester Medical Center
Liver Transplant for Hepatocellular Carcinoma (HCC)
HCC, or HepatoCellular Carcinoma, is a type of cancer that begins in the liver. People with scarring of their livers (cirrhosis), regardless of the original cause, are at higher risk of developing HCC. People infected with Hepatitis B or Hepatitis C viruses have an even higher risk. Although the presence of active cancer usually precludes the possibility of undergoing a transplant (because the immune suppressing drugs given afterwards can cause a cancer to grow uncontrollably), HCC can potentially be cured with liver transplant, and this is commonly practiced.
There are defined criteria that must be met in order to be considered a good candidate for liver transplant for HCC. These are referred to as the “Milan Criteria” and basically it comes down to if the tumor or tumors are not too large or numerous and they haven’t spread outside of the liver or into the blood vessels of the liver, then transplant is the best option for achieving a complete cure. Specifically, if there is one tumor, it can’t be greater than 5 centimeters (2 inches), and if there are multiple tumors, they can number no more than 3 and each has to be between 2 and 3 centimeters (1 ¼ inch).
When people are placed on the waiting list for liver transplant, where you are on the list depends on how sick your liver is. We estimate the function of your liver by calculating your MELD score (Model for End Stage Liver Disease). This score is obtained by a simple blood test in which the bilirubin (the yellow pigment that causes jaundice), the creatinine (a measure of your kidney function), and INR (a measure of how thin your blood is) values are used in a mathematical formula that generates a number between 6 (perfectly normal) and 40 (critically ill). The higher your MELD score, the sicker your liver, and the higher you are on the list.
This allocation system puts people with HCC at a disadvantage because the liver function is often nearly normal when an early HCC is first diagnosed. If a patient had to wait until their MELD score progressed to within the range of receiving organ offers, the HCC may grow or spread while waiting. The United Network of Organ Sharing (UNOS, the national oversight agency for transplantation in the U.S.) allows “exception” MELD points to patients with HCC who are within the Milan Criteria. Upon being placed on the waiting list, the MELD score automatically starts at 22 and increases every 3 months, if still within criteria, additional points are added. Most HCC patients undergoing transplant have “exception” MELD scores of around 30 or higher in large populated centers such as SF, LA & NYC, but their true (or “biologic”) MELD scores are much lower. That means that most HCC patients are not terribly sick or may even feel completely healthy at the time of their transplant.
HCC is almost always diagnosed with a CAT scan or MRI. These imaging studies demonstrate tell-tale characteristics that usually make biopsy of the tumor unnecessary. If there is any doubt, then biopsy will be performed, but this is rare. We often proceed to treatment based solely on imaging studies and other clinical information alone. A blood test called “AFP” (Alpha FetoProtein) is always checked, as it can be elevated in up to 60% of patients with HCC, but it can be normal despite the presence of tumor. Also, the AFP level doesn’t necessarily correlate with how extensive the tumor is, but steadily increasing levels or extremely high levels do raise concern for a more advanced or aggressive tumor.
Once the diagnosis of HCC is made and the patient is deemed to be a good candidate for transplant, the patient is immediately put on the list with exception points and offered treatment to slow down or halt the growth of the tumor while waiting for the MELD points to accrue. If the patient is not a good candidate for transplant because of medical, surgical, or social reasons, HCC treatment will still be offered. If the HCC is discovered too late and the tumor has already spread outside of the liver or into the liver blood vessels, then palliative care or comfort care approaches are considered. Finally, if the HCC is slightly outside of the Milan criteria (for example, 4 tumors instead of 3, or a single tumor measuring 5.5 centimeters), then the possibility exists to try to “downsize” the tumor to get the patient within Milan Criteria so that they can be transplanted.
Two basic approaches to HCC tumor control exist: catheter based “embolization” therapies and directed needle “ablation” therapies. For embolizations, a catheter is placed in the groin and directed into the liver where chemotherapy (“TACE” or TransArterial ChemoEmbolization) or radiation coated glass beads are injected directly into the tumor. Large portions of the liver can be treated at one time with these methods. Tumor ablations are usually performed by placing needles through the skin directly into the tumor to deliver energy (most often radiofrequency waves) that kills the tumor. This is known as “RFA” or RadioFrequency Ablation. These procedures are most always performed by the Interventional Radiologists using conscious sedation and do not require admission to the hospital afterwards. These two approaches are very effective in keeping the HCC in check prior to transplant, but they are not considered curative therapies.
Liver cancer can also be surgically removed. Although the results can be quite good, the recurrence rates can be as high as 50% or greater within 5 years of surgery. With liver transplantation for HCC, survival rates are greater than 80% at 5 years and the recurrence rate is 12% or less at 5 years. These excellent results are achieved because not only is the tumor taken out at the time of transplant, but also the diseased liver that is predisposed to forming tumors. Sometimes surgical removal (or “resection”) is considered if the patient is not a good transplant candidate or, rarely, in order to improve one’s chances for ultimately getting a liver transplant. But the most common course of action, if possible, is to list for transplant, apply for exception points if within the Milan Criteria, and to begin tumor embolization and/or ablation treatment as soon as possible to stay within criteria or to attempt “downsizing” if slightly outside of criteria.
As you can see, treatment decision pathways for HCC are complicated and can vary greatly depending on the individual’s clinical situation. Nonetheless, excellent results can be achieved if the HCC is caught early. A multidisciplinary approach to HCC and transplant involves surgeons, hepatologists, oncologists, interventional radiologists, imaging scientists, pathologists, and nurse coordinators, all of the highest order, working together to deliver state of the art and highly personalized care.
Hector
COMMUNITY LEADER
Hi Country!
Mike really cover the subject well. I'll just add my own two cents worth.
First and foremost. An AFP of 15 not unusual for folks with hepatitis C. Although it is technically above "the norm" in a healthy person which is about <8 AFP it can rise for other reasons than just cancer. Elevated AFP can also be caused by inflammation and regenerative activity of the liver which of course is typical for those with hepatitis C liver disease and cirrhosis which creates regenerative nodules on our cirrhotic livers.
The bottom line is.
YOU HAVE NOTHING TO WORRY ABOUT.
One thing to keep in mind is that "high" is a relative term. Which is why I always ask posters for the numbers. What one person thinks is high and troublesome my not be. Numbers count.
Also remember there are false negatives so there are people with HCC that have normal AFP levels.
As with all things with liver disease the more we learn the more complex it is. AFP by itself may not be good or bad it depends on the context.
An example of levels of "high" AFP
<10 ng/mL - normal
10 and 100 ng/mL - low
100 and 1,000 ng/mL - high
1,000 ng/mL + - very high
--------------------------------------------------------------------------------
These are my AFP numbers as I developed 3 different tumors in my liver. Up until my current tumor.
My first tumor 2.4 cm
12/21/2011 AFP 66.1 ng/mL
Second tumor 2.8 cm
2/21/2012 AFP 98.3 ng/mL
"Classic" escalating AFP in the last 3 months
4/3/2012 44.3 ng/mL
5/29/2012 69.5 ng/mL
8/21/2012 104.6 ng/mL
9/18/2012 111.7 ng/mL
12/3/2012 291.2 ng/mL
3/7/2013 669.6 ng/mL (This last tumor I have now is 2.0 cm)
I should also add that HCC has no symptoms until it is end-stage which is why surveillance is so important.
If you have any particular questions about HCC let me know. My AFP number in two weeks will decide if I can get a transplant or not so it is vital to me.
Hector
Mike really cover the subject well. I'll just add my own two cents worth.
First and foremost. An AFP of 15 not unusual for folks with hepatitis C. Although it is technically above "the norm" in a healthy person which is about <8 AFP it can rise for other reasons than just cancer. Elevated AFP can also be caused by inflammation and regenerative activity of the liver which of course is typical for those with hepatitis C liver disease and cirrhosis which creates regenerative nodules on our cirrhotic livers.
The bottom line is.
YOU HAVE NOTHING TO WORRY ABOUT.
One thing to keep in mind is that "high" is a relative term. Which is why I always ask posters for the numbers. What one person thinks is high and troublesome my not be. Numbers count.
Also remember there are false negatives so there are people with HCC that have normal AFP levels.
As with all things with liver disease the more we learn the more complex it is. AFP by itself may not be good or bad it depends on the context.
An example of levels of "high" AFP
<10 ng/mL - normal
10 and 100 ng/mL - low
100 and 1,000 ng/mL - high
1,000 ng/mL + - very high
--------------------------------------------------------------------------------
These are my AFP numbers as I developed 3 different tumors in my liver. Up until my current tumor.
My first tumor 2.4 cm
12/21/2011 AFP 66.1 ng/mL
Second tumor 2.8 cm
2/21/2012 AFP 98.3 ng/mL
"Classic" escalating AFP in the last 3 months
4/3/2012 44.3 ng/mL
5/29/2012 69.5 ng/mL
8/21/2012 104.6 ng/mL
9/18/2012 111.7 ng/mL
12/3/2012 291.2 ng/mL
3/7/2013 669.6 ng/mL (This last tumor I have now is 2.0 cm)
I should also add that HCC has no symptoms until it is end-stage which is why surveillance is so important.
If you have any particular questions about HCC let me know. My AFP number in two weeks will decide if I can get a transplant or not so it is vital to me.
Hector
@mikesimon..I was in the GS7977 w/ riba and INF for 12 weeks trial from June till Sept 2012.It was a blinded study..I just got the good news on March 18th that I was at SVR after 27weeks of EOT. Thanks you all,that makes me feel better. God I hope Hector is doing ok.Any word about how he is doing?
Sure miss him on here.
~Country
Sure miss him on here.
~Country
"...Alpha-Fetoprotein (AFP)
Alpha-fetoprotein levels may be assessed by a blood test. Alpha-fetoprotein (AFP) is a tumor marker that is elevated in 60–70% of patients with hepatocellular carcinoma. Normally, levels of AFP are below 10 ng/ml, but marginal elevations (10–100) are common in patients with chronic hepatitis. However, all patients with elevated AFP should be screened (abdominal ultrasound, CT scan or MRI) for hepatocellular carcinoma, especially if there has been an increase from baseline levels. In our experience, a steadily rising AFP is almost diagnostic of hepatocellular carcinoma. The specificity of AFP is very high when the levels are above 400 ng/ml. Undifferentiated teratocarcinoma and embryonal cell carcinoma of the testis or ovary may give false-positive results and should be considered in the differential diagnosis of elevated AFP.
The doubling time of AFP is around 60–90 days. Therefore, it may be advisable to check AFP every 3–4 months to screen high-risk cirrhotic patients (hepatitis C, hepatitis B, and hemochromatosis) for hepatocellular carcinoma. "
http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Cat_ID=551CDCA7-A3C1-49E5-B6A0-C19DE1F94871&GDL_Disease_ID=a349f0ec-5c87-4a52-9f2e-69afdb80c3d1
I really don't think your number at 15 is something to worry about. It is slightly above range but just slightly.
When did you achieve SVR and when did you stop treatment?
Alpha-fetoprotein levels may be assessed by a blood test. Alpha-fetoprotein (AFP) is a tumor marker that is elevated in 60–70% of patients with hepatocellular carcinoma. Normally, levels of AFP are below 10 ng/ml, but marginal elevations (10–100) are common in patients with chronic hepatitis. However, all patients with elevated AFP should be screened (abdominal ultrasound, CT scan or MRI) for hepatocellular carcinoma, especially if there has been an increase from baseline levels. In our experience, a steadily rising AFP is almost diagnostic of hepatocellular carcinoma. The specificity of AFP is very high when the levels are above 400 ng/ml. Undifferentiated teratocarcinoma and embryonal cell carcinoma of the testis or ovary may give false-positive results and should be considered in the differential diagnosis of elevated AFP.
The doubling time of AFP is around 60–90 days. Therefore, it may be advisable to check AFP every 3–4 months to screen high-risk cirrhotic patients (hepatitis C, hepatitis B, and hemochromatosis) for hepatocellular carcinoma. "
http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Cat_ID=551CDCA7-A3C1-49E5-B6A0-C19DE1F94871&GDL_Disease_ID=a349f0ec-5c87-4a52-9f2e-69afdb80c3d1
I really don't think your number at 15 is something to worry about. It is slightly above range but just slightly.
When did you achieve SVR and when did you stop treatment?
Same answer as rivals. I just went over this with my gastro. Mine was at 40 when I started this in dec. After I began treatment it went to 28. I was just tested and got results yesterday (mon) now it at 7.8 /ref range is <9. And as rival said your doc was doing a good job being cautious. Mine was doing the same. He also explained it is not reliable unless it gets up into the 100s and continues to climb. Read Hector's post concerning his afp levels. I am cirrhotic also and just getting used to it. Congrats countrygirl!! Start feeling better!!
Hi,
I hope some of the well informed people will chime in soon and answer your questions.
I will tell you what I know regarding my own experience.
As a cirrhotic my AFP was higher than normal, especially before treatment.
I know it is a tumor marker, but I believe it can be high in cirrhotics who do not have cancer, as well Since end of treatment my AFP though still a little high is closer to normal.
They will always be watching us for HCC because of our cirrhosis. If you haven't had a colonoscopy in 5 years it is routine to get one at your age, no worries.
It appears to me that you have a thorough Dr. who is taking good care of you.
I too, worry about cancer, I think we are so used to being in that disease mode that we almost expect our health to continue to fail.
I think not though, Countrygirl, doc is just doing his job well and you are likely fine. Amazing isn't it, this new lease on life...we are just going to get better and better. A whole different perspective for me. :)
I hope some of the well informed people will chime in soon and answer your questions.
I will tell you what I know regarding my own experience.
As a cirrhotic my AFP was higher than normal, especially before treatment.
I know it is a tumor marker, but I believe it can be high in cirrhotics who do not have cancer, as well Since end of treatment my AFP though still a little high is closer to normal.
They will always be watching us for HCC because of our cirrhosis. If you haven't had a colonoscopy in 5 years it is routine to get one at your age, no worries.
It appears to me that you have a thorough Dr. who is taking good care of you.
I too, worry about cancer, I think we are so used to being in that disease mode that we almost expect our health to continue to fail.
I think not though, Countrygirl, doc is just doing his job well and you are likely fine. Amazing isn't it, this new lease on life...we are just going to get better and better. A whole different perspective for me. :)
I am also being scheduled for Colonoscopy in the next few weeks.I hope that this is just protocol.
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