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Beat HVC but now faced with HCC
My MRI report was just given to me and it's not good. Its shows two T1 bright, contour deforming lesions in the lateral segment of the left lobe measuring 1.2 and 0.8 cm. They have them categorized as LI-RADS 4 A. Meaning probably HHC!!! I am being treated at Thomas Jefferson in Philadelphia, PA. My Hepatologist called me about an hour after I picked up my report and told me that the team is having a meeting on 10/8/13 to plan a course of action. Also told me the only way to cure it for sure is a liver transplant. Its kind of disheartening because I went through hell getting rid of the HCV only to wind up with this. Any information or comments would be greatly helpful.
Hi I came back to thank you for this post. This made me realize how important it is to go in every 6 months for the sonogram and blood work.
My hepatologist told me I could just come in once a year now that I was clear for a year and a half but I think every 6 months makes more sense.
I am sorry that you have HCC, it has to be devastating after clearing the HCV.
Thank you again.
Dee
My hepatologist told me I could just come in once a year now that I was clear for a year and a half but I think every 6 months makes more sense.
I am sorry that you have HCC, it has to be devastating after clearing the HCV.
Thank you again.
Dee
Actually my MRI was done because of an abnormal ultrasound that was done as a follow up to my treatment of Hep C & cirrhosis. Even though I cleared the Hep C the cirrhosis has to be checked on from time to time via imaging. So every six months my Dr. orders an ultrasound or MRI on a alternating secluded. I too had no symptoms of HCC and in fact no one really does until the cancer is in its advanced stage. This is why the survival rate for someone with HCC is poor. If caught early and depending on the condition of ones liver there are procedures that can be done to greatly improve the outcome of HCC.
As for the AFP and other blood test. Most of mine are normal or near normal which means the liver is still working ok. The important thing to do now is to make sure the MRI is done and if necessary find a good hepatologist who will answer all your questions and do everything that needs to be done. Hopefully the test will come back as only hepatic hemangiomas which is associated with THAD, Good luck and keep us posted.
As for the AFP and other blood test. Most of mine are normal or near normal which means the liver is still working ok. The important thing to do now is to make sure the MRI is done and if necessary find a good hepatologist who will answer all your questions and do everything that needs to be done. Hopefully the test will come back as only hepatic hemangiomas which is associated with THAD, Good luck and keep us posted.
Was there any reason for you to suspect HCC in the first place? Was the MRI just a routine check or were there other things that happened that made the doc want to do the MRI?
Had you had any symptoms such as losing weight, or loss of appetite, feeling more run down then normal?
I am wondering because my husband has a small spot on his liver (2.3 x 3 cm. The doctors are still determining what it is, the AFP test came back normal, but I have read that when a tumor is less then 5 cm there may not be enough protine to show up on the test results, or it may be tumor that the AFP doesn't pick up at all.
He has no symptoms of cancer such as losing weight suddenly, no appetite, no energy....but maybe the tumer is too small for any of that to happen. The doc also said it could THAD (some kind of vein thing). we do our MRI on Friday...my husband starts a new job on Sunday...and will be traveling alot...we wanted to go forward until we had a reason not to...but I can't help but worry until we get an absolute yes or no on all his results...
Had you had any symptoms such as losing weight, or loss of appetite, feeling more run down then normal?
I am wondering because my husband has a small spot on his liver (2.3 x 3 cm. The doctors are still determining what it is, the AFP test came back normal, but I have read that when a tumor is less then 5 cm there may not be enough protine to show up on the test results, or it may be tumor that the AFP doesn't pick up at all.
He has no symptoms of cancer such as losing weight suddenly, no appetite, no energy....but maybe the tumer is too small for any of that to happen. The doc also said it could THAD (some kind of vein thing). we do our MRI on Friday...my husband starts a new job on Sunday...and will be traveling alot...we wanted to go forward until we had a reason not to...but I can't help but worry until we get an absolute yes or no on all his results...
You are all wonderful people, I am honored to know each and every one of you.
Ceanthus is so right, Hector is much loved, respected and admired here.
Hector, you know how I feel you save my life, if not for you I would not have treated my HCV.
Rivil you are a sweetheart to share your information, I value you everything you share, you help in so many ways
Advocate, you are the best, asking me about my meld score was the best thing you could have done. As Hector said I am anxious about the cirrhosis for no reason.
Sevits, Rpoo, so kind of you to respond
MZkity, you always make me smile, your energy comes across
Pasquelem, congratulations for getting to SVR, I can not even begin to imagine the feeling, after getting their to discover you have HCC, my thoughts are with you
Ceanthus is so right, Hector is much loved, respected and admired here.
Hector, you know how I feel you save my life, if not for you I would not have treated my HCV.
Rivil you are a sweetheart to share your information, I value you everything you share, you help in so many ways
Advocate, you are the best, asking me about my meld score was the best thing you could have done. As Hector said I am anxious about the cirrhosis for no reason.
Sevits, Rpoo, so kind of you to respond
MZkity, you always make me smile, your energy comes across
Pasquelem, congratulations for getting to SVR, I can not even begin to imagine the feeling, after getting their to discover you have HCC, my thoughts are with you
COMMUNITY LEADER
Hi Pasquale,
I think that waiting is the best choice in the end, Especially for someone with good liver function. HCC is now that main concern for your doctor and colleagues.
Of course what we do is always our decision in the end as patients. Remember this is your life. You should always feel comfortable with the your medical care. If you ever feel uncomfortable with anything it is your right to question anything and expect to be listened to and responded to. It is our right to understand all we want to know in terms we can understand. When done properly it can help to build a trustful and respectful bond between ourselves and out doctors. I think our relationships with our hepatologist is very important as when it comes to HCC we are dealing with a possible life-threatening cancer.
Waiting will be difficult at times. Unfortunately waiting is the name of the game when it comes to many aspects of the liver transplant process. AS far as HCC, I had to wait 6 months for my first tumor to grow to 2.0 cm to get my HCC exception points. I would think to myself, I must be crazy. Who ever heard of waiting and watching a tumor grow??? Only with HCC. Because livers are in such short supply and are rationed we must wait until the tumor is large enough to technically assure that it is truly HCC. It is a legacy from years ago when patients would be diagnosed with HCC move up the transplant list and then it would turn out not to be HCC when the old liver was removed and examined. Sometimes this cancer and the way it is managed is so illogical you have to laugh to keep from crying.
Hang in there.
You know you can always count on me to help you in any way I can my friend.
Ciao
Howie
I think that waiting is the best choice in the end, Especially for someone with good liver function. HCC is now that main concern for your doctor and colleagues.
Of course what we do is always our decision in the end as patients. Remember this is your life. You should always feel comfortable with the your medical care. If you ever feel uncomfortable with anything it is your right to question anything and expect to be listened to and responded to. It is our right to understand all we want to know in terms we can understand. When done properly it can help to build a trustful and respectful bond between ourselves and out doctors. I think our relationships with our hepatologist is very important as when it comes to HCC we are dealing with a possible life-threatening cancer.
Waiting will be difficult at times. Unfortunately waiting is the name of the game when it comes to many aspects of the liver transplant process. AS far as HCC, I had to wait 6 months for my first tumor to grow to 2.0 cm to get my HCC exception points. I would think to myself, I must be crazy. Who ever heard of waiting and watching a tumor grow??? Only with HCC. Because livers are in such short supply and are rationed we must wait until the tumor is large enough to technically assure that it is truly HCC. It is a legacy from years ago when patients would be diagnosed with HCC move up the transplant list and then it would turn out not to be HCC when the old liver was removed and examined. Sometimes this cancer and the way it is managed is so illogical you have to laugh to keep from crying.
Hang in there.
You know you can always count on me to help you in any way I can my friend.
Ciao
Howie
I just want to thank everyone for all their comments. Hector has, as always, been a big book of knowledge on the liver. I too agree with a lot of other members who feel we are lucky to have someone like him guiding us through this. Just for an update on my HCC. My hepatologist and the rest of the cancer team had the meeting about me and have decided to wait until the lesion grows to 2cm before they take action. Its is now 1.5cm in the left lobe. The reason why is because (As Hector told me before hand) when it gets to 2cm I will get points that will move me up on the transplant list. My liver is functioning well right now and they feel it's worth the wait. Easy for them to say but I do understand the reasoning. I have an appointment with them next week and I will keep all informed. Again thanks for all your support.
Pasquale
Pasquale
I was not going to comment because you had so many good replies and of course Hector answered your questions and more...
But I have decided to chime in and basically second some points that Hector made.
First I attained SVR last year only to discover a few months ago that I too have HCC.
It may not be a death sentence but it is absolutely life changing and Hector is right that you will be experiencing an emotional roller coaster for awhile.
I had one tumor and underwent the TACE procedure. It is a little rough on recovery but it is doable. I was fortunate to have Howie (Hector) as my guide through this and it helped me tremendously.
The TACE killed the tumor and has bought me time so that I might undergo a transplant. I am overwhelmed at the idea of such major surgery but if it is the only way I can continue living I will deal with it.
Take it one step and one day at a time.
You are welcome to contact me with any questions.
I wish you all the best.
Riv
But I have decided to chime in and basically second some points that Hector made.
First I attained SVR last year only to discover a few months ago that I too have HCC.
It may not be a death sentence but it is absolutely life changing and Hector is right that you will be experiencing an emotional roller coaster for awhile.
I had one tumor and underwent the TACE procedure. It is a little rough on recovery but it is doable. I was fortunate to have Howie (Hector) as my guide through this and it helped me tremendously.
The TACE killed the tumor and has bought me time so that I might undergo a transplant. I am overwhelmed at the idea of such major surgery but if it is the only way I can continue living I will deal with it.
Take it one step and one day at a time.
You are welcome to contact me with any questions.
I wish you all the best.
Riv
COMMUNITY LEADER
I am so sorry to hear of your HCC diagnosis, you have been through so much already. Find the strength to keep your head up and stay determined, learn all you can just as you probably have done dealing with your HCV and cirrhosis. There is always comfort in knowledge then giving you the ability to communicate better with your doctors about treatment and putting together a plan of action. It always helps me feel better, it just takes time. I hope the very best for you.
Howie is a brilliant and kind hearted man, we are so lucky to have him share his knowledge and experience. His advice above is very meticulous as always!
Randy
Howie is a brilliant and kind hearted man, we are so lucky to have him share his knowledge and experience. His advice above is very meticulous as always!
Randy
Hector, you are an amazing person. I can only speak for myself but you have helped me tremendously. Since meeting you I have gotten better health care providers, I'm not afraid anymore. I have my days, but for the most part I am not living in fear. I keep very good track of my procedures and labs and have learned so much about this disease. This all comes from you and a couple of others. I can never repay you or thank you enough. I can only try to pay it forward as best I can and keep you in my daily prayers.
Shelley
Shelley
COMMUNITY LEADER
You are so very kind.
If I have anything that others find useful it is because I have had the best teachers. I have worked 6 years with my hepatologist who is one of the most respected and well-known experts in the field. It is only because of her and her colleges that I am still alive to this day. How can I ever express my gratitude to them?
I have also heard the personal stories of hundreds of liver transplant patients and learned something from all of their journeys.
And lastly I live every day with, until know, untreatable HCC, which is not something I ever want to have anyone else to ever have to experience.
I am commented to helping others who are suffering with advanced cirrhosis and HCC for as long as I can. I feel it is my responsibility to reach out and lend a helping hand to others who find themselves lost on the life's journey. If I can help just one person is enough to keep me fighting on.
“Only in the darkness can you see the stars.”
― Martin Luther King Jr.
How strange yet how true.
Howie
If I have anything that others find useful it is because I have had the best teachers. I have worked 6 years with my hepatologist who is one of the most respected and well-known experts in the field. It is only because of her and her colleges that I am still alive to this day. How can I ever express my gratitude to them?
I have also heard the personal stories of hundreds of liver transplant patients and learned something from all of their journeys.
And lastly I live every day with, until know, untreatable HCC, which is not something I ever want to have anyone else to ever have to experience.
I am commented to helping others who are suffering with advanced cirrhosis and HCC for as long as I can. I feel it is my responsibility to reach out and lend a helping hand to others who find themselves lost on the life's journey. If I can help just one person is enough to keep me fighting on.
“Only in the darkness can you see the stars.”
― Martin Luther King Jr.
How strange yet how true.
Howie
I am so very sorry to hear this. It's still great that you beat the HCV. You can beat this too. I don't have much to say because everyone has pretty much said it all. You are already on my prayer list. Please do keep in touch and let us know what is going on.
Best, best wishes
Shelley
Best, best wishes
Shelley
I am so very sorry. I just read this and all the great comments. I agree with all especially what Advocate said:
Fear can cause us to get overwhelmed and delay things. In the case of HCC and advanced liver disease, waiting can mean waiting too long.
I know about the fear and waiting, I also know that after tx I was so tired of doctors and just tired in general that I let my regular health deteriorate.
Lost my GP and was just too tired to find a new one.
I was finally forced to find one when pain in my shoulder forced the issue.
Someone once said to me that God will knock lightly to get you attention, if that does not work, he hits you with a brick wall.
Just an anecdote my best to you, hang in there and please keep in touch.
Fear can cause us to get overwhelmed and delay things. In the case of HCC and advanced liver disease, waiting can mean waiting too long.
I know about the fear and waiting, I also know that after tx I was so tired of doctors and just tired in general that I let my regular health deteriorate.
Lost my GP and was just too tired to find a new one.
I was finally forced to find one when pain in my shoulder forced the issue.
Someone once said to me that God will knock lightly to get you attention, if that does not work, he hits you with a brick wall.
Just an anecdote my best to you, hang in there and please keep in touch.
"HectorSF seems to know a lot and is very helpful."
That might be the understatement of the year! Hector is our rock here on these forums, and his advice is always top-of-the-line. I actually trust Hector a little more than I trust the hepatologist I've been seeing for 25 years! I'm sending my best wishes for you, pasquelem.
That might be the understatement of the year! Hector is our rock here on these forums, and his advice is always top-of-the-line. I actually trust Hector a little more than I trust the hepatologist I've been seeing for 25 years! I'm sending my best wishes for you, pasquelem.
Thanks to everyone who gave me insight into this post. I will try and stay more involved with the members and offer what I can as far as support and knowledge. HectorSF seems to know a lot and is very helpful. Again thanks to everyone
I'm glad to see Hector replying to your post pasqualem. He has given you some great information, and I encourage you to send him a PM.
It sounds like you have a good team of transplant hepatologists around you, since you are already established at Thomas Jefferson in Philadelphia.
Fortunately, you are already being treated by a hepatologist in a university based medical center that has a liver transplant center. I'm sure you've already explored this web page, but just in case:
http://www.jeffersonhospital.org/departments-and-services/liver-transplant-program/what-to-expect
Best wishes, and please keep us posted.
Advocate1955
It sounds like you have a good team of transplant hepatologists around you, since you are already established at Thomas Jefferson in Philadelphia.
Fortunately, you are already being treated by a hepatologist in a university based medical center that has a liver transplant center. I'm sure you've already explored this web page, but just in case:
http://www.jeffersonhospital.org/departments-and-services/liver-transplant-program/what-to-expect
Best wishes, and please keep us posted.
Advocate1955
I was just reading some of your other posts, and I see you have portal hypertension and varices that have required banding. Do you have ascites (fluid build up in the abdomen)? Do you know if you have Hepatic Encephalopathy (HE) as well? Do you have periods of confusion, memory loss, disorientation, etc? The reason I ask is because given your other two symptoms, it sounds as though your liver damage is quite advanced and your liver is decomepnsating (not performing all of its functions). Do you know your MELD score? Hopefully your doctors will be able to treat your HCC to keep you as healthy as possible, but they may also recommend that you start going through the process of getting approved for a transplant. It is a lengthy process, requires a lot of appointments and assessments, and it takes some time. If they do recommend this, don't delay. Fear can cause us to get overwhelmed and delay things. In the case of HCC and advanced liver disease, waiting can mean waiting too long. If they recommend treatment for your tumor, do it right away. If they recommend getting listed for a transplant, it is better to start the process right away as it can take months to complete the assessments and to wait for approval.
Advocate1955
Advocate1955
I am sorry to hear this news too. I definitely encourage you to reach out to other members who have HCC and have had various treatments for it: HectorSF, rivll, halfwatt, are the ones that come to mind.
Best wishes,
Advocate1955
Best wishes,
Advocate1955
Oh, I am so sorry to hear that. I truly am. Congrats on getting rid of the HCV though, that's a great thing. Don't give up hope. I will keep you in my thoughts and prayers. Try to keep your chin up and find things to be positive about, even the small things.
The very best to you,
Shelley
The very best to you,
Shelley
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Yes the only cure is a liver transplant once you have cirrhosis and portal hypertension. Not having hep C is good because your liver should last long enough to get a transplant and you won't have to treat it after transplant.
Personally I would let the tumor grow to 2.0 cm so you can get the cancer MELD score exception points and then have it treated. The sooner you get your 22 points the sooner you will get a transplant. Then you will get extra points every 3 months generally. Time to transplant is measured by time since having a 2.0 cm HCC. Liver disease and blood counts do not determine MELD for us with HCC. Blood level are used in those with End-Stage Liver Disease not HCC.
HCC is not a death sentence. Only for some of us. You should be monitored closely with MRIs and AFP blood tests to look for more tumors appearing as they most likely will before transplant. You main focus now should be on your cancer. Cirrhosis and HCV are now minor related conditions.
You should at least learn the basics about tumor treatments as you will at some point treat your tumors with probably TACE (TransArterial ChemoEmbolization). This is where they use a catheter to feed into your groin and up into the liver where the tumor is and then small beads coated with a chemo drug is released. This blocks the blood flow to the tumor and lets the chemo work on the tumor for many weeks. Results will show in about a month.
I have had HCC for 27 months and had 4 TACE treatments, 3 Percutaneous Ethanol Injections and about to undergo CyberKnife robotic radiation treatment. I have a worse case scenario so your experience probably won't be as bad or as extensive.
Leaving with a deadly cancer is usually life changing. I would advise looking for a support group at your transplant center or talking to someone who is experienced in dealing with patients with cancer. Emotionally this can be by far the toughest thing you ever have experienced. There are many ups and downs as you wait for transplant, which can take up to 18 months at NYC, LA and Bay Area transplant centers.
Good luck.
If I can help just send me a private message.
Hector
AFP > 1,000
MELD score = 36