Aa
Liver Mass
I apologize for not telling you about the mass in my liver to begin with. I didn't mean to waste your time. Thanks for all of the input you have given me, it hasn't gone to waste. I guess you could call it denial. Writing it down has made me face the truth, before I just felt kind of numb and didn't talk about it. Your warm and caring messages made me feel like I could trust you and I am grateful for that. Does anybody else have any comments about this? Last time I saw my doctor she talked about tumors and cancer. I will have the results of the blood work and the MRI next time I see her.
Yes I also have a low blood MELD score. But that can be a good thing.
* It means you can have any treatment to get rid of any tumors. Patients that are more ill can't have TACE for example.
* If you do have HCC. When the tumor reaches 2.0 cm the transplant center will apply to UNOS and get you registered to get HCC exception points. Your Meld will then be 22. Every 3 months you will receive more MELD points. So it will go like this 22, 25, 28, 29, 31 etc. That is how I have a MELD of 28 today. Next week I will have a MELD of 29. At a lot of transplant centers you can probably get a transplant by the time you reach a MELD score of 28 or 29.
Yes, having other coexisting condition or diseases can be an issue. Maybe with HCC treatment. With transplant I know they definitely can be. A patient has to be about to survive the surgery to get a transplant. But everyone is different and unique. So just because you have another disease doesn't rule you out automatically. Only your transplant center can determine if you are healthy enough to survive a transplant.
Hang in there. Live every day as fully as possible. None of us are guaranteed tomorrow.
Hector
* It means you can have any treatment to get rid of any tumors. Patients that are more ill can't have TACE for example.
* If you do have HCC. When the tumor reaches 2.0 cm the transplant center will apply to UNOS and get you registered to get HCC exception points. Your Meld will then be 22. Every 3 months you will receive more MELD points. So it will go like this 22, 25, 28, 29, 31 etc. That is how I have a MELD of 28 today. Next week I will have a MELD of 29. At a lot of transplant centers you can probably get a transplant by the time you reach a MELD score of 28 or 29.
Yes, having other coexisting condition or diseases can be an issue. Maybe with HCC treatment. With transplant I know they definitely can be. A patient has to be about to survive the surgery to get a transplant. But everyone is different and unique. So just because you have another disease doesn't rule you out automatically. Only your transplant center can determine if you are healthy enough to survive a transplant.
Hang in there. Live every day as fully as possible. None of us are guaranteed tomorrow.
Hector
Your post was so informative and made me feel so much better. Thank you for taking the time to help. Besides the low MELD score, the doctor mentioned that I had a lot of other medical problems, too. That may really hurt me in the end. We'll just have to wait and see.
Here is my 2 cents on learning to live with liver cancer or even the possibility of liver cancer. Whether it is worth 2 cents is for your to decide.
Hi. I also have cirrhosis with hepatic encephalopathy and ascites as well as HCC liver cancer. I have had 2 tumors so fat and had 2 TACE treatments. One on each lobe of my liver. My AFP has been rising from 30 to 104 over the last 5-6 months so I probably have another tumor now. I will find out next Tuesday when I have my MRI, CT chest scan and some blood work.
I remember June 1st 2011 when I was told on the phone that I had liver cancer. I went into shock for about 2 months. I figured I was dead at that point. Of course I wasn't and I am not about to die now if I have any say in it. HCC is treatable now. As long as it is caught early when it is small, which yours obviously is that is why your doctor is watching it. When it is less them 1 cm in size it is hard to tell if it is HCC or another benign growth. Even if it is HCC it had to grow to 2.0 cm for you to get exception MELD points for HCC. It sounds like you have a low MELD score so you won't get a transplant in the time you need without the cancer exception points. I had to let my cancer tumor grow for 6 months before I got my initial 22 MELD exception points. Now after next Tuesday I will have a MELD score of 29 so I am close to getting a transplant. 6 months or less.
Liver cancer is no easy thing to live with. Even just the possibility if have liver cancer can be a nightmare. Learning to live with liver cancer toughest thing I have ever experienced. Knowing that if it should spread outside of my liver I will have only 4-6 months to live is not something that anyone has a easy time dealing with. If that doesn't scare you then I don't know what could. Somehow each of us has to come to terms with our on morality. I have a therapist who I can talk to about death and my fears about it. She has worked with many dying patients. It is not something you can even talk to your closest friends about. People get freaked out because they haven’t faced their own mortality. So realize it isn’t that they don’t caring they just are unprepared to deal with death because it is something most people need to keep at a distance for obvious reasons. Unless they have faced death themselves, they just can understand. To hold it inside of yourself is not good. Like many things, when they are kept in the dark they appear more frightening than they really are. Once we turn the light on our deep dark secrets they lose the power they have over us. We can take our power back. It can hurt you mentally it hide your fears from even your own self. Our minds are the only thing we can have control over. Well not our mind but how we choose to act on our feelings and thoughts. We don’t have control over most things. Especially cancer. All cancer want to do is grow and multiply. That is what it does. I have already though about and planned my own death, if it should go that way. I want to die the way I want to die. I want to be a peace when I die. I have said everything I have ever wanted to say to people so they know how I feel about them… should the worse happen. I will donate all my organs to others if any of them can be used by anyone. I know where I want my ashes put in San Francisco Bay and have an agreement with my sister that she will fulfill my wishes. Meanwhile I am gonna fight this cancer until the end if I have too. But if I must die I want to die with as much dignity as possible.
But don't get me wrong, I am not planning on dying anytime if I can help it. So if I need another chemo treatment, so be it. Everything is scary the first time, but I have already had 2 treatment so one more TACE is what I will do to give me more time alive and hopefully allow me to get enough time to get a live-saving transplant.
You should really get your support team together now. Friends, family, dogs, cats, whoever will make you feel supported and cared for. Where I will get my transplant they will not put you on the transplant list without a good support team around you. Why? Because people without support don't have good outcomes. Just before and after transplant patients become helpless. On a practical level you need someone with you after transplant just to count the 40 or so pills you will need to take in every day. You can't take the wrong pills when you are out of your head after transplant. That could be fatal. So I hope you have a lot of support. Without my friends and family I wouldn't have made it this far. No transplant patient does it on there own.
Hey none of us are perfect and handle advanced liver disease perfectly. But we have to try to face facts. Denial is something we all use as a defense mechanism at times. But sometimes denial in a life and death situation can be self defeating. Many a person has felt pain and tried to ignore it until it became so bad they had to see a doctor. When they did if it was cancer by then it is too late. Luckily our cancer was caught early. Liver cancer has no symptoms. Just like early hepatitis C. Most people feel perfectly health and actually believe they are. Well of course that is far from true. Luckily you have a doctor at a transplant center watching your mass. That is the appropriate thing to do. So you have time now to come to terms with the possibility of cancer. Unless the tumor board has said it is HCC then it is only a guess. Even is it is HCC. It can be treated. It will get you a transplant quicker. It is not all doom and gloom. I have lived with HCC for 14 months now and my docs have kept me alive and so can yours. Really I guarantee it is not the end of the world by any means. I meet a woman on Tuesday 4 years ago she had 5 tumors and a AFP of over 1,500! She got a transplant and is healthier then both of us. So if she can do it so can we. I've seen people in a lot worse shape then us. I see patients even week dying of liver disease waiting for a life saving transplant. Compared to them we have it made. I can still walk and talk and go to the bathroom on my own. They can't. So who am I to say "whoa is me" "poor me" etc etc. Sure we have to cry sometimes. I have my crying times. That is just part of the process of dealing with this disease. If you didn't cry I would worry. But then when I am done processing my sadness I somehow pick myself back up little by little and go on to fight another day. So no matter how hopeless you might feel at times it too will past and the sun will shine again. Knowing that this disease it a roller coast of intense emotion. Some times you will feel on top of the world. Like you have beaten all the adds at other times it will feel like the whole world is on your back. We are only human and this is the reality of our situation. All I know is I'd rather live one more day suffering then to be "at peace" and dead. Bring on the suffering and pain at least I know I am alive. That is good enough for me.
I hope maybe I said something that rings a bell. You are not alone in this. unfortunately there are a number in this same sinking boat. But we do have a life preserver called "transplant" that to our doctors, surgeons, nurses and so many other at our transplant centers that will take us to a new life, a second chance to live again. Few people ever get a second chance. I am grateful to have such an opportunity and I don't plan on squandering the opportunity.
Hang in there.
Oh speaking of lemons.
I try to take the lemon of liver cancer and make it into lemonade. Add a little sugar and some ice cubes and bingo it ain't all bad...
Hector
Hi. I also have cirrhosis with hepatic encephalopathy and ascites as well as HCC liver cancer. I have had 2 tumors so fat and had 2 TACE treatments. One on each lobe of my liver. My AFP has been rising from 30 to 104 over the last 5-6 months so I probably have another tumor now. I will find out next Tuesday when I have my MRI, CT chest scan and some blood work.
I remember June 1st 2011 when I was told on the phone that I had liver cancer. I went into shock for about 2 months. I figured I was dead at that point. Of course I wasn't and I am not about to die now if I have any say in it. HCC is treatable now. As long as it is caught early when it is small, which yours obviously is that is why your doctor is watching it. When it is less them 1 cm in size it is hard to tell if it is HCC or another benign growth. Even if it is HCC it had to grow to 2.0 cm for you to get exception MELD points for HCC. It sounds like you have a low MELD score so you won't get a transplant in the time you need without the cancer exception points. I had to let my cancer tumor grow for 6 months before I got my initial 22 MELD exception points. Now after next Tuesday I will have a MELD score of 29 so I am close to getting a transplant. 6 months or less.
Liver cancer is no easy thing to live with. Even just the possibility if have liver cancer can be a nightmare. Learning to live with liver cancer toughest thing I have ever experienced. Knowing that if it should spread outside of my liver I will have only 4-6 months to live is not something that anyone has a easy time dealing with. If that doesn't scare you then I don't know what could. Somehow each of us has to come to terms with our on morality. I have a therapist who I can talk to about death and my fears about it. She has worked with many dying patients. It is not something you can even talk to your closest friends about. People get freaked out because they haven’t faced their own mortality. So realize it isn’t that they don’t caring they just are unprepared to deal with death because it is something most people need to keep at a distance for obvious reasons. Unless they have faced death themselves, they just can understand. To hold it inside of yourself is not good. Like many things, when they are kept in the dark they appear more frightening than they really are. Once we turn the light on our deep dark secrets they lose the power they have over us. We can take our power back. It can hurt you mentally it hide your fears from even your own self. Our minds are the only thing we can have control over. Well not our mind but how we choose to act on our feelings and thoughts. We don’t have control over most things. Especially cancer. All cancer want to do is grow and multiply. That is what it does. I have already though about and planned my own death, if it should go that way. I want to die the way I want to die. I want to be a peace when I die. I have said everything I have ever wanted to say to people so they know how I feel about them… should the worse happen. I will donate all my organs to others if any of them can be used by anyone. I know where I want my ashes put in San Francisco Bay and have an agreement with my sister that she will fulfill my wishes. Meanwhile I am gonna fight this cancer until the end if I have too. But if I must die I want to die with as much dignity as possible.
But don't get me wrong, I am not planning on dying anytime if I can help it. So if I need another chemo treatment, so be it. Everything is scary the first time, but I have already had 2 treatment so one more TACE is what I will do to give me more time alive and hopefully allow me to get enough time to get a live-saving transplant.
You should really get your support team together now. Friends, family, dogs, cats, whoever will make you feel supported and cared for. Where I will get my transplant they will not put you on the transplant list without a good support team around you. Why? Because people without support don't have good outcomes. Just before and after transplant patients become helpless. On a practical level you need someone with you after transplant just to count the 40 or so pills you will need to take in every day. You can't take the wrong pills when you are out of your head after transplant. That could be fatal. So I hope you have a lot of support. Without my friends and family I wouldn't have made it this far. No transplant patient does it on there own.
Hey none of us are perfect and handle advanced liver disease perfectly. But we have to try to face facts. Denial is something we all use as a defense mechanism at times. But sometimes denial in a life and death situation can be self defeating. Many a person has felt pain and tried to ignore it until it became so bad they had to see a doctor. When they did if it was cancer by then it is too late. Luckily our cancer was caught early. Liver cancer has no symptoms. Just like early hepatitis C. Most people feel perfectly health and actually believe they are. Well of course that is far from true. Luckily you have a doctor at a transplant center watching your mass. That is the appropriate thing to do. So you have time now to come to terms with the possibility of cancer. Unless the tumor board has said it is HCC then it is only a guess. Even is it is HCC. It can be treated. It will get you a transplant quicker. It is not all doom and gloom. I have lived with HCC for 14 months now and my docs have kept me alive and so can yours. Really I guarantee it is not the end of the world by any means. I meet a woman on Tuesday 4 years ago she had 5 tumors and a AFP of over 1,500! She got a transplant and is healthier then both of us. So if she can do it so can we. I've seen people in a lot worse shape then us. I see patients even week dying of liver disease waiting for a life saving transplant. Compared to them we have it made. I can still walk and talk and go to the bathroom on my own. They can't. So who am I to say "whoa is me" "poor me" etc etc. Sure we have to cry sometimes. I have my crying times. That is just part of the process of dealing with this disease. If you didn't cry I would worry. But then when I am done processing my sadness I somehow pick myself back up little by little and go on to fight another day. So no matter how hopeless you might feel at times it too will past and the sun will shine again. Knowing that this disease it a roller coast of intense emotion. Some times you will feel on top of the world. Like you have beaten all the adds at other times it will feel like the whole world is on your back. We are only human and this is the reality of our situation. All I know is I'd rather live one more day suffering then to be "at peace" and dead. Bring on the suffering and pain at least I know I am alive. That is good enough for me.
I hope maybe I said something that rings a bell. You are not alone in this. unfortunately there are a number in this same sinking boat. But we do have a life preserver called "transplant" that to our doctors, surgeons, nurses and so many other at our transplant centers that will take us to a new life, a second chance to live again. Few people ever get a second chance. I am grateful to have such an opportunity and I don't plan on squandering the opportunity.
Hang in there.
Oh speaking of lemons.
I try to take the lemon of liver cancer and make it into lemonade. Add a little sugar and some ice cubes and bingo it ain't all bad...
Hector
I think you actually did mention a mass in your other post - if it is the one where you said, "My doctor there has been watching a mass for all of this year." I know the urge to speculate is irresistible but quite honestly I would wait until your September 5th doctor appointment and see what your labs & other results reveal. Then you can find out the details of your condition: whether or not you have decompensated cirrhosis, hepatic encephaly, the nature of any masses or tumors and so on.
I gather you have a list of questions as well. It helps to keep you focused and on track when you go to a meeting with an agenda. I like my doctor and rarely ever get to see him and when I do actually see him I just sit and listen. I ask the questions I remember but it isn't until I am at home several hours later that I realize I did not ask half of what I wanted to. So don't let that happen to you! :)
The other thing is that since you will be in town and they will have your chart out now is the time to ask for copies of all your labs and medical records. Otherwise you will have to call them when you get home and rely on them to mail (or fax) them to you. It really helps to have the exact phrasing on the medical record rather than paraphrasing when you come on line.
September 5 is not that far off. I hope your appointment is productive and goes well. Just remember you are not alone :)
I
I gather you have a list of questions as well. It helps to keep you focused and on track when you go to a meeting with an agenda. I like my doctor and rarely ever get to see him and when I do actually see him I just sit and listen. I ask the questions I remember but it isn't until I am at home several hours later that I realize I did not ask half of what I wanted to. So don't let that happen to you! :)
The other thing is that since you will be in town and they will have your chart out now is the time to ask for copies of all your labs and medical records. Otherwise you will have to call them when you get home and rely on them to mail (or fax) them to you. It really helps to have the exact phrasing on the medical record rather than paraphrasing when you come on line.
September 5 is not that far off. I hope your appointment is productive and goes well. Just remember you are not alone :)
I
Many times these masses end up being benign, so I will be praying for you as well.
In a public forum like this, it is wise to only reveal as much about your health, as you feel comfortable with. There have been times where I have regretted posting too much of my personal imfo, and there is no edit button!
In a public forum like this, it is wise to only reveal as much about your health, as you feel comfortable with. There have been times where I have regretted posting too much of my personal imfo, and there is no edit button!
You don't waste anyone's time, it is really okay to tell what you want to or not.
Hector can probably help you most with this, I have no direct experience with cancer, except that I believe the size and location of the tumor on your liver will determine what can be done.
It seems to me if I remember your recent posts that you have decompensated cirrhosis? If so, it is important that you have someone with you to help you with questions and answers for your Dr. about the necessary steps preparing for a transplant. It is too much for most people with HE to absorb and remember so much information.
My prayers are with you SusieQ- you can send messages to people as well as post if you just need to chat and not go public. Of course you are welcome to go public too.
Lemons are good for you. Drink as much as lemon infused water as you like, it will keep things moving. :-)
All the best to you.
Hector can probably help you most with this, I have no direct experience with cancer, except that I believe the size and location of the tumor on your liver will determine what can be done.
It seems to me if I remember your recent posts that you have decompensated cirrhosis? If so, it is important that you have someone with you to help you with questions and answers for your Dr. about the necessary steps preparing for a transplant. It is too much for most people with HE to absorb and remember so much information.
My prayers are with you SusieQ- you can send messages to people as well as post if you just need to chat and not go public. Of course you are welcome to go public too.
Lemons are good for you. Drink as much as lemon infused water as you like, it will keep things moving. :-)
All the best to you.
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