Stage 4 HCC - my introduction

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.

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

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?

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!