Stage 4 HCC - my introduction

stage4liver

Hi my names Mike and I’m 41 and I have recently been diagnosed with Stage 4 HCC - primary liver cancer...oh wait this isn’t that kind of group haha. No laughing matter but that's how I deal with things like this, humor.

I was diagnosed March 3 2010 with no prior symptoms. I was transferred to another hospital for a resection of a 13.5cm tumor on my liver. They also found more smaller ones on the right side they couldn’t get out. The surgeon said he couldnt take it all out he had to leave me with some liver. No Cirrhosis, No hepa, no diabetes, was told I fall into one of the unlucky ones that just gets it. Was then told under a year to live….isnt that just like taking a 4x4 to the face... I just went numb, especially since I felt great prior and feel great now. I had one night of pain in my left side and went to the doc the next day. He said you can watch it or go for a CT to see for sure what it is and choose the CT. Thanks Doc Schnieds!!

I have since transferred my care to Sloan in NY as the surgeon here said they weren’t looking at curative anymore. I go for new scans in another week to see where we’re at and come up with a plan! There’s no way I’m going down without one hell of a fight first.

I just wanted to introduce myself as I might have some questions. I’ve already read all the doom and gloom about this disease on the internet and know more about HCC than I probably wanted to know.

Great forums and website! God bless all of you going through this horrible disease!!

kohsin

Figh the good fight!
I had 9 cm x 9cm tumor removed in Febuary. No complications thank God! Mike - Everyone is different, make sure you think positive! you are too young for this crap.. I will pray for you and all..

chris37

Like the sense of humor
Hey Mike,
I noticed you said you had pain in your left side one night. Reason I ask is my left side has been bothering me for over a month and now Im getting pain in my right side. I did have an MRI which they thought I had secondary cancer to my liver from the images. I have tumors in both right and left lobes. I was referred to an Onco Doc and they did blood work which was all in normal range except for my liver enzymes which were elevated. I was then ordered a Pet scan which did not light anything up. So they are now saying that it is not cancer. They are thinking the liver tumors are hormonal related but not sure. I go back for another MRI the end of July and another round of blood work and see where I fall out. For the most part I feel pretty good. I was just curious did you have any abnormal blood work?? Im sorry for your news and hope that everything will turn out ok for you.


Christine

stage4liver

chris37 said:

Like the sense of humor
Hey Mike,
I noticed you said you had pain in your left side one night. Reason I ask is my left side has been bothering me for over a month and now Im getting pain in my right side. I did have an MRI which they thought I had secondary cancer to my liver from the images. I have tumors in both right and left lobes. I was referred to an Onco Doc and they did blood work which was all in normal range except for my liver enzymes which were elevated. I was then ordered a Pet scan which did not light anything up. So they are now saying that it is not cancer. They are thinking the liver tumors are hormonal related but not sure. I go back for another MRI the end of July and another round of blood work and see where I fall out. For the most part I feel pretty good. I was just curious did you have any abnormal blood work?? Im sorry for your news and hope that everything will turn out ok for you.


Christine

Hi Christine,
Yes my AFP
Hi Christine,

Yes my AFP values in blood were like 6800 and they're suppose to be i think under 20. I had extensive blood work done 2yrs prior and nothing out of the norms...Best wishes on your new scans!

Tina Blondek

Welcome
Hi Mike,
Sorry to hear your news, but your wonderful sense of humor will help you tremendously. I was a caregiver for my dad, who unfortunately passed away on 3/9/10. He beat ec, but in December, he got mets to his liver. He could not beat this. I wish you the best of luck in your journey. You are in one of the best, well known, cancer centers in the USA. Prayers are being said for you daily.
Tina

NumOneMom4

Hep C, cirrhosis and liver cancer
Mike, My husband would never do this, so I am doing it for my own information. My husband was confirmed with HCC in January. They found the tumor on a routine ultrasound in Nov. 2009, as he also was undergoing observation for his Hep C. We go to Medical College of VA in Richmond every three to four months. He had a radiofrequency ablation treatment in January for one tumor they said was approx 3 cm. We were supposed to go back in six weeks for his recheck and to discuss evaluating him for transplant. At that time, we were told that his one tumor had now become 10 to 12 tumors involving both lobes of the liver. How can that happen in six weeks time. Now we are looking at a new treatment called sirspheres, which involves injecting him with radioactive beads directly into the hepatic artery that leads to the tumors. It is supposed to shrink them. We are scheduled for May 6. Have you or anyone you know had this treatment done? There is very little real information about it on the internet, and the doctors are very evasive. They have not given us any time line, because right now his liver is still functioning well. Just as you said, he feels great right now, and I almost hate for him to have this done. I would love to talk to anyone who has had it done, or who knows someone who has. They are also going to put him on a new cancer drug called Nexavar. Anyone out there with info on that would be appreciated too.

kohsin

NumOneMom4 said:

Hep C, cirrhosis and liver cancer
Mike, My husband would never do this, so I am doing it for my own information. My husband was confirmed with HCC in January. They found the tumor on a routine ultrasound in Nov. 2009, as he also was undergoing observation for his Hep C. We go to Medical College of VA in Richmond every three to four months. He had a radiofrequency ablation treatment in January for one tumor they said was approx 3 cm. We were supposed to go back in six weeks for his recheck and to discuss evaluating him for transplant. At that time, we were told that his one tumor had now become 10 to 12 tumors involving both lobes of the liver. How can that happen in six weeks time. Now we are looking at a new treatment called sirspheres, which involves injecting him with radioactive beads directly into the hepatic artery that leads to the tumors. It is supposed to shrink them. We are scheduled for May 6. Have you or anyone you know had this treatment done? There is very little real information about it on the internet, and the doctors are very evasive. They have not given us any time line, because right now his liver is still functioning well. Just as you said, he feels great right now, and I almost hate for him to have this done. I would love to talk to anyone who has had it done, or who knows someone who has. They are also going to put him on a new cancer drug called Nexavar. Anyone out there with info on that would be appreciated too.

SIR with Resection
My 9x9 cm toumor was found in Oct 2009, I had the SIR 4 weeks later, no overnight stay, the follow up showed slight growth (due to only partial vein that fed the tumor were captured). In December, I had one more SIR alone with portal embolization done on the same day, this time with overnight stay. The follow up after 6 weeks showed great results, it shrank down to 4 x5 with my left lobe grew as planned.
The resection was done in Feb. 70% of the liver was out and the path showed all clean. I think the SIR is the way to go as there is minimal side effect and you can perform as many times as required.. Type SIR on internet and you should be able to pull up amble info on this. Just so you know SIR is not cheap, one treatment is almost 150K
I had the treatment and surgery done at UIC medical here in Chicago. Good doctors with great knowledge.
Good luck to your other half and always be positive..

NumOneMom4

kohsin said:

SIR with Resection
My 9x9 cm toumor was found in Oct 2009, I had the SIR 4 weeks later, no overnight stay, the follow up showed slight growth (due to only partial vein that fed the tumor were captured). In December, I had one more SIR alone with portal embolization done on the same day, this time with overnight stay. The follow up after 6 weeks showed great results, it shrank down to 4 x5 with my left lobe grew as planned.
The resection was done in Feb. 70% of the liver was out and the path showed all clean. I think the SIR is the way to go as there is minimal side effect and you can perform as many times as required.. Type SIR on internet and you should be able to pull up amble info on this. Just so you know SIR is not cheap, one treatment is almost 150K
I had the treatment and surgery done at UIC medical here in Chicago. Good doctors with great knowledge.
Good luck to your other half and always be positive..

sirspheres
Thank you so much for sharing your story. I hope that my husbands goes as well. He is very apprehensive, as he does not really know what is going on. I don't think he really wants to know. I read as much information as I can on the internet, but I just wanted to hear from someone who had actually had the treatment done. My husband also has cirrhosis, so he is not a candidate for resection. They were considering transplant, until so many more tumors popped up after the RFA treatment in Jan. I hope you continue to do well.

stage4liver

NumOneMom4 said:

sirspheres
Thank you so much for sharing your story. I hope that my husbands goes as well. He is very apprehensive, as he does not really know what is going on. I don't think he really wants to know. I read as much information as I can on the internet, but I just wanted to hear from someone who had actually had the treatment done. My husband also has cirrhosis, so he is not a candidate for resection. They were considering transplant, until so many more tumors popped up after the RFA treatment in Jan. I hope you continue to do well.

I beleive the SIR is the
If your doctors arent giving you the answers, keep asking and if they still dont answer switch doctors. My brother has been going to all my appoints at Sloan with me and he brings a digital recorder along to tape everything said so we can play it back and relisten as you're bound to forget things...

I beleive the SIR is the same or very similar to an embolization, try looking up "chemo embolization" or go on Memorial Sloan Kettering's website or MD Anderson in Houstons they are the #1 & 2 cancer hospitals in the nation and have descriptions on their websites of available treatment options. They can do embolizations blank or with chemo saturated beads. I just got home from another trip to Sloan in NYC and they are hoping to do an embolization and possibly an ablation at the same time on me in a couple weeks. I have (3) tumors in my most recent scans (2) under 2cm and (1) just under 3cm, the 13.5cm tumor was resected 5 weeks ago here in WI.

Your husband shouldnt worry too much about the proceedure, there's risk with any type of surgery but these are minimally invassive and usually only need a night in hospital for observation. I was terrified of my resection surgery moreso than the cancer itself, what if I dont wake up, what if there's a problem, etc etc but it went great and was up and walking the next day, I tried to walk the night of, but was only able to stand then lay back down haha...was out on the 5th day.

They are planning to do my embolization blank (no chemo) as I guess they can repeat the process more frequently when blank vs. with chemo beads where it can damage more of your liver including arrteries. I'm still hopefull we are going to ablate all three of them and would be my choice so I guess the ride continues!! Good luck and prayers to your husband. Its a **** disease as i've found out over the past 2 months but you have to make the best of it and not let the cancer run your life. I've tried my best to take mine back and I do have way more good days than bad days!

Tina Blondek

stage4liver said:

I beleive the SIR is the
If your doctors arent giving you the answers, keep asking and if they still dont answer switch doctors. My brother has been going to all my appoints at Sloan with me and he brings a digital recorder along to tape everything said so we can play it back and relisten as you're bound to forget things...

I beleive the SIR is the same or very similar to an embolization, try looking up "chemo embolization" or go on Memorial Sloan Kettering's website or MD Anderson in Houstons they are the #1 & 2 cancer hospitals in the nation and have descriptions on their websites of available treatment options. They can do embolizations blank or with chemo saturated beads. I just got home from another trip to Sloan in NYC and they are hoping to do an embolization and possibly an ablation at the same time on me in a couple weeks. I have (3) tumors in my most recent scans (2) under 2cm and (1) just under 3cm, the 13.5cm tumor was resected 5 weeks ago here in WI.

Your husband shouldnt worry too much about the proceedure, there's risk with any type of surgery but these are minimally invassive and usually only need a night in hospital for observation. I was terrified of my resection surgery moreso than the cancer itself, what if I dont wake up, what if there's a problem, etc etc but it went great and was up and walking the next day, I tried to walk the night of, but was only able to stand then lay back down haha...was out on the 5th day.

They are planning to do my embolization blank (no chemo) as I guess they can repeat the process more frequently when blank vs. with chemo beads where it can damage more of your liver including arrteries. I'm still hopefull we are going to ablate all three of them and would be my choice so I guess the ride continues!! Good luck and prayers to your husband. Its a **** disease as i've found out over the past 2 months but you have to make the best of it and not let the cancer run your life. I've tried my best to take mine back and I do have way more good days than bad days!

Good News Mike
Hi Mike
Thanks for your recent update. I am glad to hear that things are going well for you. Very smart idea for your brother not only to go with you, but to bring the recorder with him. There is a husband and wife on the esophageal board. The husband, Jim, has just learned that he has mets to his liver. They are finding out about this treatment you speak of. They are going to MD Anderson. Hope it all works out for all of you. Keep in touch.
Tina

slg

NumOneMom4 said:

Hep C, cirrhosis and liver cancer
Mike, My husband would never do this, so I am doing it for my own information. My husband was confirmed with HCC in January. They found the tumor on a routine ultrasound in Nov. 2009, as he also was undergoing observation for his Hep C. We go to Medical College of VA in Richmond every three to four months. He had a radiofrequency ablation treatment in January for one tumor they said was approx 3 cm. We were supposed to go back in six weeks for his recheck and to discuss evaluating him for transplant. At that time, we were told that his one tumor had now become 10 to 12 tumors involving both lobes of the liver. How can that happen in six weeks time. Now we are looking at a new treatment called sirspheres, which involves injecting him with radioactive beads directly into the hepatic artery that leads to the tumors. It is supposed to shrink them. We are scheduled for May 6. Have you or anyone you know had this treatment done? There is very little real information about it on the internet, and the doctors are very evasive. They have not given us any time line, because right now his liver is still functioning well. Just as you said, he feels great right now, and I almost hate for him to have this done. I would love to talk to anyone who has had it done, or who knows someone who has. They are also going to put him on a new cancer drug called Nexavar. Anyone out there with info on that would be appreciated too.

NumOneMom4
My husband has HCC and had a procedure called TACE (Transarterial Chemoembolization) He is also on Nexavar. Both are Chemo treatments. So far so good. His labs are coming back good. His AST and ALT do fluctuate from week to week but his AFP (alpha feta protien) is now in the normal range.
He doesn't go back for another CT scan until June then we will see how his tumors are. Anymore info on Nexavar feel free to email slg72@aol.com.
SLG

vazquez7

hello to you
Hi Mike,

I was diagnosed with HCC 3.5 years ago. I underwent a resection to remove the tumor and so far so good. It is a frightening thing but humor and a positive mental state will go a long way. My tumor was 9.0 cm and like you I had no hep, cirr, nothing. It was graded a stage 1 and had not gone anywhere else. It had encapsulated itself in its own capsule. I was blessed but I was very afraid. Folks here have given you very good info. Leave no stone unturned and ask questions. It is a tricky cancer as it usually has no symptoms. I have you in my thoughts. take care

inlovingmemorygtw2010

great positivity
I think what you are doing is great. My dad just passed away from liver cancer and he went fast- 5 weeks after being diagnosed. However he died from an infection because his immune system was bascially killed by the chemo. His white count was .02 when it should be in the thousands. My dad had the same posivity and said he was going to knock this cancer out and he wold have if that infection didn't get in his body. Good luck with everything!

microsue

My husband's HCC
My husband was diagnosed with HCC in Dec. 09. His tumor was 17cm at this time, he started nexavar within 3 weeks and at that time his tumor had grown to 20cm. Since then it has stayed relatively the same. We did get a second opinoin with the same option, nexavar. Resection was not an option as there would not have been enough good liver left, plus it appears as if the tumor has also invaded the hepatic artery. I don't know if the the symptoms he has are from the nexavar or the cancer, he has steadily gotten worse these past 6 months, has lost 80 lbs and has difficulty keeping food and drink down. He goes in for IV fluids + potassium 3x/weekly. He had a recent hospital stay for dehydration and a recent CAT scan revealed nodules, unsure what they are exactly. He is not strong enough for further testing. We will wait until the next CAT scan to see if there is growth.
I hope you are doing well and have a good support system. These are the times we rely on our loved ones.
Blessings,
Sue

stage4liver

microsue said:

My husband's HCC
My husband was diagnosed with HCC in Dec. 09. His tumor was 17cm at this time, he started nexavar within 3 weeks and at that time his tumor had grown to 20cm. Since then it has stayed relatively the same. We did get a second opinoin with the same option, nexavar. Resection was not an option as there would not have been enough good liver left, plus it appears as if the tumor has also invaded the hepatic artery. I don't know if the the symptoms he has are from the nexavar or the cancer, he has steadily gotten worse these past 6 months, has lost 80 lbs and has difficulty keeping food and drink down. He goes in for IV fluids + potassium 3x/weekly. He had a recent hospital stay for dehydration and a recent CAT scan revealed nodules, unsure what they are exactly. He is not strong enough for further testing. We will wait until the next CAT scan to see if there is growth.
I hope you are doing well and have a good support system. These are the times we rely on our loved ones.
Blessings,
Sue

Hi Sue,
I'm sooo sorry to
Hi Sue,

I'm sooo sorry to hear about your husbands diagnosis and rapid decline in strength and weight loss. I just got home from Sloan Kettering Saturday after an attemtepted chemo embolization of my liver tumors. Which unfortunately was halted due to complications with the artery they were in. The good news is we are trying again in a couple weeks. I've found out there are very limited treatment options for HCC and have been recommended Nevevar as well because mine has spread to my adrenal gland and lung. Instead I chose to enter a clinical trial at MSK to compare bland TAE vs TACE (except its the drug eluting beads not the typical slurry TACE) I wound up in the debTACE which I hoped to get. Funny thing is that I still feel really good, working full time and eating well so I dont get it (being stage 4 that has spread) but am not complaiing about it either! I do have awesome family and friends and I couldnt ask for a better support group.

I dont know if your husband can keep Ensure down but that might help a little as they have different formulation including weight gain...maybe even try the essiac tea...I would definitely ask the doctors first but if they say feel free its worth a try...hell anything is worth trying in my eyes as long as its not detrimental to the conventional medicine being administered. Sue, my prayers are with you and your husband!

SarahD

stage4liver said:

Hi Sue,
I'm sooo sorry to
Hi Sue,

I'm sooo sorry to hear about your husbands diagnosis and rapid decline in strength and weight loss. I just got home from Sloan Kettering Saturday after an attemtepted chemo embolization of my liver tumors. Which unfortunately was halted due to complications with the artery they were in. The good news is we are trying again in a couple weeks. I've found out there are very limited treatment options for HCC and have been recommended Nevevar as well because mine has spread to my adrenal gland and lung. Instead I chose to enter a clinical trial at MSK to compare bland TAE vs TACE (except its the drug eluting beads not the typical slurry TACE) I wound up in the debTACE which I hoped to get. Funny thing is that I still feel really good, working full time and eating well so I dont get it (being stage 4 that has spread) but am not complaiing about it either! I do have awesome family and friends and I couldnt ask for a better support group.

I dont know if your husband can keep Ensure down but that might help a little as they have different formulation including weight gain...maybe even try the essiac tea...I would definitely ask the doctors first but if they say feel free its worth a try...hell anything is worth trying in my eyes as long as its not detrimental to the conventional medicine being administered. Sue, my prayers are with you and your husband!

New HCC diagnosis
Hello my name is Sarah I am 25 years old. My dad is 54 years old. He was recently diagnosed with HCC in march of 2010. He has never been sick a day in his life, he does not drink or smoke, he does all the right things! This is so devestating for our family. His only symptom was abdominal pain with occasional nausea and vomiting. He had complained to his primary care doctor for 3 months! He had 2 ultrasounds that both came back "normal" How did they miss the 8 cm tumor on his liver? He has no cirrhosis and his liver function is normal. He does have diabetes and hypertenion and fatty liver (my dad is only 160lbs). It has been one roller coaster ride. His AFP was nomral which i guess happens on 35% of patients. So they told us it was probably colon ca with mets, his egd/colonoscopy was negative. The doctors at the local hospital told us it was HCC and probably had 1 year to live. We got a second opinion at mass general in Boston, ma. They were so much lighter and happier. They couldnt believe it because my dad had no risk factors for this malignancy. Our first step was a biopsy, then a Hepatic vein embolization to cut of the blood supply to the tumor which was on the right side of the liver. This allowed blood to back flow to the left side and allow that side to grow in anticipation of surgery. We had to wait 6 weeks between surgery and the embolization to allow the liver to grow large enough on the left side. On May 21,2010 my dad underwent a complete right lobe liver resection. They removed 75% of his liver including the gall bladder. The surgeon said they had clean margins and he was considered cancer free at this time. He was in the hospital 6 days and was discharged only to be readmitted 2 days later for fluid build up in the abdomen (not ascites) He had a leaking bile duct and had an ERCP with a stent placed along with a drain in the area where the liver was resected. The sugeon said this was a common complication of the surgery and will go away. He said no we just have to follow up with scans every three months. Is this true? should we be getting chemo or radiation on top of the surgery? This is just so hard I am so afraid I dont want my dad to die! He looks so sad and defeted I want him be determined to live but he just looks so depressed! Sory this is so long just telling the story of our journey over the last 3 months it is a life changing event! Any feedback?

stage4liver

SarahD said:

New HCC diagnosis
Hello my name is Sarah I am 25 years old. My dad is 54 years old. He was recently diagnosed with HCC in march of 2010. He has never been sick a day in his life, he does not drink or smoke, he does all the right things! This is so devestating for our family. His only symptom was abdominal pain with occasional nausea and vomiting. He had complained to his primary care doctor for 3 months! He had 2 ultrasounds that both came back "normal" How did they miss the 8 cm tumor on his liver? He has no cirrhosis and his liver function is normal. He does have diabetes and hypertenion and fatty liver (my dad is only 160lbs). It has been one roller coaster ride. His AFP was nomral which i guess happens on 35% of patients. So they told us it was probably colon ca with mets, his egd/colonoscopy was negative. The doctors at the local hospital told us it was HCC and probably had 1 year to live. We got a second opinion at mass general in Boston, ma. They were so much lighter and happier. They couldnt believe it because my dad had no risk factors for this malignancy. Our first step was a biopsy, then a Hepatic vein embolization to cut of the blood supply to the tumor which was on the right side of the liver. This allowed blood to back flow to the left side and allow that side to grow in anticipation of surgery. We had to wait 6 weeks between surgery and the embolization to allow the liver to grow large enough on the left side. On May 21,2010 my dad underwent a complete right lobe liver resection. They removed 75% of his liver including the gall bladder. The surgeon said they had clean margins and he was considered cancer free at this time. He was in the hospital 6 days and was discharged only to be readmitted 2 days later for fluid build up in the abdomen (not ascites) He had a leaking bile duct and had an ERCP with a stent placed along with a drain in the area where the liver was resected. The sugeon said this was a common complication of the surgery and will go away. He said no we just have to follow up with scans every three months. Is this true? should we be getting chemo or radiation on top of the surgery? This is just so hard I am so afraid I dont want my dad to die! He looks so sad and defeted I want him be determined to live but he just looks so depressed! Sory this is so long just telling the story of our journey over the last 3 months it is a life changing event! Any feedback?

Sarah,
Your dad should be
Sarah,

Your dad should be f’n ecstatic that they were able to resect it all with good margins and he is currently cancer free!! My 13.5cm tumor wasn’t with good margins; I have multiple tumors on the right side and it has spread to the adrenal and lung. They aren’t really worried about the adrenal and lung right now as those can still be ablated off because they are pretty small. You dad is very lucky it was caught fairly early in his case only being a single tumor as most cases arent. Fatty liver is also a cause of HCC…I didn’t fit the profile for any of the top reason, was told some people just get it…bad luck kind of thing. My AFP’s are through the roof, they were 6800 before resection and at last check are now 3000 but are suppose to be under like 10. I feel great, my liver function tests all came back in range. I went in for a chemoembolization a week ago but got sent home because of a rare complication so we’re going at it again in another couple weeks. I’ve transferred to Sloan Kettering in NY now but had a similar prognosis here locally…less than a year to live… but Sloan has been more upbeat and not date stamping me..Also was back to work fulltime 7 days after my surgery was out of hospital in 5, did lots of walking…haha

You mention chemo…traditional chemo either by IV or oral isn’t really effective on HCC from what I’ve read, it just doesn’t work, so they typically don’t prescribe that in treatment options. I was surprised too as I was thinking bring it all on and lets get to it!!! He still isn’t completely out of the woods as HCC has a very high recurrence rates so stay on schedule with CT’s as doc’s recommend and pray it doesn’t show its ugly head ever again. What I would suggest you look into is changing diet if he hasn’t already. What I mean by that is trying to change over to more plant based proteins instead of animal proteins along with tons of fruits and veggies. I have cut out “almost” all processed foods, red meats, even very little chicken and am eating a low fat, low sugar, low sodium diet and I think that’s partly why I still feel so good. I think they tell you to just eat a balanced but I took it a little further…

Remind your dad although unlucky to get HCC in the first place he is one of the lucky ones that only had one tumor and it was resected with good margin… that is pretty uncommon as far as HCC goes…I plan to beat the odds myself and make it through this!!

Try looking up a book written by the doc’s at sloan..i think its called “100 questions & answers about liver cancer”. My brother bought it and I read it as well its pretty informative. Here’s a link but you can probably find it at amazon or other sources too
http://www.jblearning.com/catalog/9780763761745/

Best wishes to your dad and keep telling him how much you love him!!

SarahD

stage4liver said:

Sarah,
Your dad should be
Sarah,

Your dad should be f’n ecstatic that they were able to resect it all with good margins and he is currently cancer free!! My 13.5cm tumor wasn’t with good margins; I have multiple tumors on the right side and it has spread to the adrenal and lung. They aren’t really worried about the adrenal and lung right now as those can still be ablated off because they are pretty small. You dad is very lucky it was caught fairly early in his case only being a single tumor as most cases arent. Fatty liver is also a cause of HCC…I didn’t fit the profile for any of the top reason, was told some people just get it…bad luck kind of thing. My AFP’s are through the roof, they were 6800 before resection and at last check are now 3000 but are suppose to be under like 10. I feel great, my liver function tests all came back in range. I went in for a chemoembolization a week ago but got sent home because of a rare complication so we’re going at it again in another couple weeks. I’ve transferred to Sloan Kettering in NY now but had a similar prognosis here locally…less than a year to live… but Sloan has been more upbeat and not date stamping me..Also was back to work fulltime 7 days after my surgery was out of hospital in 5, did lots of walking…haha

You mention chemo…traditional chemo either by IV or oral isn’t really effective on HCC from what I’ve read, it just doesn’t work, so they typically don’t prescribe that in treatment options. I was surprised too as I was thinking bring it all on and lets get to it!!! He still isn’t completely out of the woods as HCC has a very high recurrence rates so stay on schedule with CT’s as doc’s recommend and pray it doesn’t show its ugly head ever again. What I would suggest you look into is changing diet if he hasn’t already. What I mean by that is trying to change over to more plant based proteins instead of animal proteins along with tons of fruits and veggies. I have cut out “almost” all processed foods, red meats, even very little chicken and am eating a low fat, low sugar, low sodium diet and I think that’s partly why I still feel so good. I think they tell you to just eat a balanced but I took it a little further…

Remind your dad although unlucky to get HCC in the first place he is one of the lucky ones that only had one tumor and it was resected with good margin… that is pretty uncommon as far as HCC goes…I plan to beat the odds myself and make it through this!!

Try looking up a book written by the doc’s at sloan..i think its called “100 questions & answers about liver cancer”. My brother bought it and I read it as well its pretty informative. Here’s a link but you can probably find it at amazon or other sources too
http://www.jblearning.com/catalog/9780763761745/

Best wishes to your dad and keep telling him how much you love him!!

I have been reading alot of
I have been reading alot of books, survior books. I heard about a place called the cancer treatment center of america they are supposed to be excellent. Im sorry to hear your cancer has spread. Did it spread in between treatments? This is my biggest fear, that the cancer will come back. How can I get your attitude? How did you become so upbeat? I havent read one good thing about this type of cancer I feel like it is a death sentence. I wish my dad would come on this forum but he would never, I dont know who is more afraid me or him. Why does this happen to healthy people like you and him? How did they find the spread of your cancer, was a routine scan?

SarahD

SarahD said:

I have been reading alot of
I have been reading alot of books, survior books. I heard about a place called the cancer treatment center of america they are supposed to be excellent. Im sorry to hear your cancer has spread. Did it spread in between treatments? This is my biggest fear, that the cancer will come back. How can I get your attitude? How did you become so upbeat? I havent read one good thing about this type of cancer I feel like it is a death sentence. I wish my dad would come on this forum but he would never, I dont know who is more afraid me or him. Why does this happen to healthy people like you and him? How did they find the spread of your cancer, was a routine scan?

I forgot to mention my dad
I forgot to mention my dad had two tumors one large one and one small one both in the same area

stage4liver

SarahD said:

I forgot to mention my dad
I forgot to mention my dad had two tumors one large one and one small one both in the same area

Hi Sarah,
I was also
Hi Sarah,

I was also diagnosed March of 2010. The first CT scan found the big tumor on the left (13.5cm) and they said there was something also on the right side. My surgery was cancelled at the first local hospital and I was sent home and referred to a liver specialist at one of our best local hospitals. Went into surgery about a week and a half later. He removed the big one without clean margin and my gallbladder. Was then told about a year to live as "there were a few more he couldnt take out" as he had to leave me some liver...He also said the CT's were pretty poor quality. That didnt sit real well with me the year to live. I'm 41 with a wife and 10yr old...my brother found Sloan Kettering in NY and started making the consult appointments. I had new scans up there and they found about 4 or 5 more in my liver largest being just over 5cm and a small one in each my adrenal and lung. So I really dont know if they were there and the poor quality first scans didnt show them or if it progressed? Sloan has about 15 people that specialize in Liver Cancer and have a group approach. I went in for a chemoembolization a week or so ago and it had to be stopped because the artery started to tear, disection I think is what its called, so was kicked down again. Dont get me wrong I was pretty disappointed and discouraged and have my moments but got over it pretty quickly. The good news is we're making another run at it in a couple weeks after it heals. I guess I try to find the positive things and grasp on to those things. I also like to read the stories where the prognosis is less than a year and the person is still kicking it 3,5,10 15 years down the road.

Cancer & the thought of death literally consumed every inch of me physically and mentally for at least 5 maybe even 6 weeks from the start of this. All I did was surf the internet reading article after article on HCC and as you know its pretty damn tough to find anything positive about the outcome. I noticed my brother had put a F*ck Cancer profile picture up on his FB account and I just started to say the same thing to myself....F*CK Cancer!! I really wanted to take my life back and I have as much as possible, never went on disability, and havent looked back yet. I look at it this way...if I do only have a yearish left on this earth I sure as hell want to enjoy it with family & friends and not spend it in misery or alone! I've met some great people in the past couple months and have no problem talking about what I've been through so far. People are usually pretty shocked when they find out I'm stage 4 and what I've all had done in a short time and still working full time which includes traveling every other week for work. I've lost some weight about 20#'s but stated to gain a few of those back. I dont know how to tell someone to have the positive outlook as its always in the back of my mind, the fears, the emotional rollercoaster, the setbacks and the what if's... but it is what it is and I have it.

I also have an awesome group of family and friends that help keep me active. Ironically a really close friend of mine who plays the electric guitar started working with the Leukemia & Lymphoma Society a few months prior to my diagnosis. They were working on remaking a song written 10 years ago for another cancer patient that was given 3 months to live. I had the pleasure to meet the man that wrote and performed the song for his best friend. I have to say it was really hard for me to listen to it (I was only out of surgery about a week or so about a month after diagnosis). I now listen to it several times a week as the second half of the song is where he beats his cancer... it's on i-tunes by CoryZ or you can check it out on ThisTimeTomorrow.org or facebook. I've also been working on bringing God back into my life and ask the big guy for help. Hope, prayer, trying to do the right things, holding on to the positives and laughter are all part of my plan!

stage4liver

stage4liver said:

Hi Sarah,
I was also
Hi Sarah,

I was also diagnosed March of 2010. The first CT scan found the big tumor on the left (13.5cm) and they said there was something also on the right side. My surgery was cancelled at the first local hospital and I was sent home and referred to a liver specialist at one of our best local hospitals. Went into surgery about a week and a half later. He removed the big one without clean margin and my gallbladder. Was then told about a year to live as "there were a few more he couldnt take out" as he had to leave me some liver...He also said the CT's were pretty poor quality. That didnt sit real well with me the year to live. I'm 41 with a wife and 10yr old...my brother found Sloan Kettering in NY and started making the consult appointments. I had new scans up there and they found about 4 or 5 more in my liver largest being just over 5cm and a small one in each my adrenal and lung. So I really dont know if they were there and the poor quality first scans didnt show them or if it progressed? Sloan has about 15 people that specialize in Liver Cancer and have a group approach. I went in for a chemoembolization a week or so ago and it had to be stopped because the artery started to tear, disection I think is what its called, so was kicked down again. Dont get me wrong I was pretty disappointed and discouraged and have my moments but got over it pretty quickly. The good news is we're making another run at it in a couple weeks after it heals. I guess I try to find the positive things and grasp on to those things. I also like to read the stories where the prognosis is less than a year and the person is still kicking it 3,5,10 15 years down the road.

Cancer & the thought of death literally consumed every inch of me physically and mentally for at least 5 maybe even 6 weeks from the start of this. All I did was surf the internet reading article after article on HCC and as you know its pretty damn tough to find anything positive about the outcome. I noticed my brother had put a F*ck Cancer profile picture up on his FB account and I just started to say the same thing to myself....F*CK Cancer!! I really wanted to take my life back and I have as much as possible, never went on disability, and havent looked back yet. I look at it this way...if I do only have a yearish left on this earth I sure as hell want to enjoy it with family & friends and not spend it in misery or alone! I've met some great people in the past couple months and have no problem talking about what I've been through so far. People are usually pretty shocked when they find out I'm stage 4 and what I've all had done in a short time and still working full time which includes traveling every other week for work. I've lost some weight about 20#'s but stated to gain a few of those back. I dont know how to tell someone to have the positive outlook as its always in the back of my mind, the fears, the emotional rollercoaster, the setbacks and the what if's... but it is what it is and I have it.

I also have an awesome group of family and friends that help keep me active. Ironically a really close friend of mine who plays the electric guitar started working with the Leukemia & Lymphoma Society a few months prior to my diagnosis. They were working on remaking a song written 10 years ago for another cancer patient that was given 3 months to live. I had the pleasure to meet the man that wrote and performed the song for his best friend. I have to say it was really hard for me to listen to it (I was only out of surgery about a week or so about a month after diagnosis). I now listen to it several times a week as the second half of the song is where he beats his cancer... it's on i-tunes by CoryZ or you can check it out on ThisTimeTomorrow.org or facebook. I've also been working on bringing God back into my life and ask the big guy for help. Hope, prayer, trying to do the right things, holding on to the positives and laughter are all part of my plan!

On the CTCA I've heard mixed
On the CTCA I've heard mixed reviews from people that met with them also possible problems with insurance. I was planning to go in for a consult as there is one about an hour from me but opted to go to Sloan instead for now. When you have HCC or any cancer for that matter I leave all options open! haha