Fibrolamellar Liver Cancer

We found our daughter needs additional surgery of lymph node dissection, as her scans were not clean. The doctor says there is no other treatment besides surgery.

akauf said:

I was diagnosed with Fibrolamellar Carcinoma when I was 25 back in 1997. I had the tumor resected in 1997 and then had a metastasis to the lung in 2000 and I had that tumor removed and then a positive lymph node removed in 2002. I am hoping that this is the end of the roller coaster. How is your daughter doing? My doctors have been following the same course of treatment...waiting for the tumor ot appear and then removing it. What doctors has she been seeing?

We are in Indianapolis Indiana. Monitored by PET and CT scans. Have a great surgeon -he is the primary doctor. The oncologist has been consulted but since there is no specific chemo available -it's not an option right now. Did you have a liver biopsy originally? How much of your liver was resected?

AllieMatt said:

I had a liver biopsy done and found I have fibrolamellar carcinoma. I am 31 and the mother of a 3 year old and 5 month old. I am having a liver resection Tuesday (50% of my right lobe). I am scared to death this is going to come back or have spread somewhere else. My doctors don't seem worried but told me they will be able to tell more once they get the tumor out. Any advice would be greatly appreciated.

Hello: I am so sorry to hear that you are going through this. I too am 31....I was first diagnosed with this fibrolamellar cancer when I was 25. I had the left lobe of my liver removed then. Where do you live? Who is doing your surgery?

AllieMatt said:

I live in Minneapolis, Minnesota and had the surgery done at the University of Minnesota. I had the surgery 2 weeks ago today. I am doing much better than 2 weeks ago, but it is still pretty painful. The doctor's told me that after doing all of the pathology on the tumor everything looked great. It had not spread to my diaphragm (which is what they were worried about). They got a 3 centimeter margin with no 'satellite' tumors and there was nothing in the lymph nodes or the blood vessels. They said I had the 'best possible outcome'. I am very optimistic that this will be it for me - but I always have it in the back of my head that it will come back or have spread somewhere else.
What about you? You had the surgery 6 years ago? Have you had anything since? How long did it take you to feel 'normal' after the surgery? I had the right side of my liver removed (50%). It is hard not being able to pick up my kids, but mainly I am having a lot of stomach problems. Did you experience any of that?

How are you doing Allie?

AllieMatt said:

I am doing much better. I feel great as far as the surgery goes. I had my first follow up scan a few weeks ago. They did find a small spot on my liver - about the size of a grain of rice. They need to follow up on with another scan on May 12th. My oncologist is not worried about it, but I am pretty dissappointed that my first post-op scan did not come back 100% clear. If the spot has grown in these 7 weeks then they will need to do further testing. If it has not then he said it probably is just a normal cyst on the liver that a lot of people have. Again - he told me not to worry, but I still do.
How is your daughter?
Thanks for the note and I will keep you posted.

She gets a PET and CT scan on 5/21. We have the follow-up appointment for the results on 6/1, as well as an appointment with the breast surgeon because she had to have a breast biopsy on 12/26. Technically, there has been no further cancer since her first surgery in February 2003. But there hasn't been a scan without a "glitch" since then.

Tammya said:

Hello. I am 21 years old. I was diagnosed with this cancer in Sept 2003. I have had chemo therapy, which was not succesful. I then had a liver resection (50% liver + lymph nodes) I have been clean for 3 months - which is great. My 1st post op scan was clear, I have another in two weeks time. I can relate to Allie when she say's that it is always in her mind that it will return.
I still get the pinching feelings under my rib and the first thought is that it is back...I am so scared to go for this next scan. The cancer was discovered after it had been mis diagnosed as a stomach ulcer for three years - the symptoms were the same. Waterbug, how is your daughter, from what I pick up, it sounds as though she is the same age as me. I am from South Africa and over here there is also not much known about this cancer, same as you all, just wait for the tumour to appear and then remove - if possible. I feel as though I am always just waiting for it to return, is it ever possible to return to life as we knew it before cancer.

My daughter just had her PET &CT scans and they were clear. She is doing well. She was 22 years old when diagnosed, with 45% of her liver resected. Her initial symptoms were also similar to an ulcer. Fortunately, our primary care doctor drew blood work. Her sed rate was very elevated & then the scans showed the liver mass. She doesn't talk about the cancer, so I am not sure what she is thinking. Were you treated in South Africa first? Where are you being treated in the U.S.? This tends to be a "better behaving" cancer, monitored by PET scans and CT scans. On a practical note about aches and pains that come up: our internal medicine doctor is wonderful -she told us when we have a question about any physical symptoms, to call her because that is why she went to med school and it's her job to diagnose what is going on & refer us if needed. As far as living life: her oncologist told us that we don't choose we are born or the day we die, but it IS our choice what we do in between. We can throw our life away worrying and living recklessly, or live to do what good God put us here to do. Don't let fear imprison or paralyze you. The reality of a cancer diagnosis IS scary,and it's important to be OK with your honest feelings. Cry, get mad ...whatever you feel. Surround yourself with loving family and friends. Cancer brings the preciousness of life to our attention. Also, sometime, you may reach out to someone else who is hurting. There is a poem called: "What Cancer Cannot Do" -you can look it up on google. It is encouraging. Try not to give cancer the power. It may sound easier said than done, since I know that I am not the one with cancer, but I would rather be the one with cancer than my child.

Hello, my name is Holly. I'm so glad I found this web site. I felt like I was the only one in the world with Fibrolamellar liver cancer and no-one could relate. I really need to hear other people's stories and how they are doing since this is an extremely rare type of cancer. It's been hard to get accurate info. on it. I'm 32 yrs. old and was diagnosed with it in December 2003 after an ulrasound and CT showed a liver mass. My dr. originally thought it was an ulcer or problems with my gallbladder. I had 1/3 of my liver resected in Dec. 2003. I have a wonderful surgeon. He thinks that he got it all and that I should be O.K. I also see an oncologist who does blood work. I had my first CT at the end of March and everything was clean. My next scan will be in Sept. I'm scared that it's going to come back or show up somewhere else. How is everyone else doing?

Tammya said:

Hello. I am 21 years old. I was diagnosed with this cancer in Sept 2003. I have had chemo therapy, which was not succesful. I then had a liver resection (50% liver + lymph nodes) I have been clean for 3 months - which is great. My 1st post op scan was clear, I have another in two weeks time. I can relate to Allie when she say's that it is always in her mind that it will return.
I still get the pinching feelings under my rib and the first thought is that it is back...I am so scared to go for this next scan. The cancer was discovered after it had been mis diagnosed as a stomach ulcer for three years - the symptoms were the same. Waterbug, how is your daughter, from what I pick up, it sounds as though she is the same age as me. I am from South Africa and over here there is also not much known about this cancer, same as you all, just wait for the tumour to appear and then remove - if possible. I feel as though I am always just waiting for it to return, is it ever possible to return to life as we knew it before cancer.

Hello - I feel so bad for you that you had to go through all of this at such a young age. They actually think I have had this for about 10 years. I was diagnosed at 32 so that would have put me at 22 or so. I sort of wish I would have found out then, maybe it would have been smaller. I am just glad they found it and got it out. It sounds like everything is going well with you though since you have had your surgery. How did your second scan come out?
I had a terrible pinching feeling after my surger. It was a few months after. I almost went to the ER, but my doctor told me to wait and come in and see him. It went away when I laid down. There was so much trauma inside us during surgery that it is going to take a long time to heal. I still feel it daily. It aches by the end of the day (especially if I have been active with my 2 kids!). I talked to my doctor again about it always hurting and they said that all of the nerve endings are new and hyper sensitive and it should get better. But - sounds like I may feel it for the rest of my life.
The feelings that this is going to recur come and go. I do not think about it daily anymore except for the week or so before my scans. I usually have my scan in the morning and then meet with my doctor 3 hours after so I don't have to wait for the results. You just have to live your life and try not to think about it. Time is the only thing that will make you feel better. It has been 6 months for me and I already feel like I am on way to being a "survivor". I know I have a long way to go, but it is all in your attitude. You are lucky to have your family so close and so involved with your life. My parents live in Utah and I am in Minneapolis. They were here for my appointments and surgery's and everything. They are incredible people and I am lucky to have them. My husband has had a hard time with this and has been quieter than usual. He has been very supportive, but does not understand my feelings very well. My kids (1 yr and 3 1/2) just look at my scar and say "the doctor got mommies owie out and now she is all better!". Oh to have such a good perspective and be so naive. My kids and my husband and my parents have gone through this too - that is the hard part. It is not all about me, but them too. Espcially for my Mom and Dad. I felt almost worse for them to see me in such pain after the surgery than for myself. I would not let my 3 1/2 year old come to the hospital until I was able to sit up and walk. I did not want to upset him anymore than I had to. Sounds like everyone on this site is blessed with close family and friends. They make it all better.
I wish you the best and please let me know how things go with your future scans.

AllieMatt said:

I know what you mean about feeling like the only one who has this type of cancer. I felt the same way. I am 32 and was diagnosed in December of 2003 as well. I had gallstones and they just did a routine scan and found the liver mass. They assured me that it was nothing and did a biopsy when I had my gallbladder removed. A few days later I got a call from my surgeon with the news that it was Fibrolamellar. I had 1/2 of my liver removed in February 2004. I have had 3 scans in 6 months and they have all been clear. With every scan you get a little less nervous, but there is always that feeling of "what if this one is the one....". Good news is that even if it does come back it is still treatable. This is a good cancer to have (if that is possible), meaning that is is slow growing and typically does not spread. I made my doctor order a bone scan proior to my surgery becasue I am scared to death of it spreading to my bones or somewhere that is untreatable. It came back clear.
How often do you get scans? Mine were once every 3 months. They did find a tiny rice grain spot on my first scan and made me come back 6 weeks after for another scan, but it turned out to be nothing. It has not grown and does not even show up on some of the scans. It was a long 6 weeks though waiting for the follow up. I just had a scan August 11th and that was clear and now I will have another December 8th.
Where do you live? I am in Minneapolis.
I also had a meeting with a genetics counselor. I have a history of breast cancer in my family as well. It was all very positive as far as there is no research to show that this type of cancer is genetic. The only thing I care about it giving this to my kids. I was very nervous about that. They said there is not a lot of research on this type of cancer, but what they do have does not show any link to genetics or breast cancer or anything. So - that is good.
I wish you well and will think about you often I am sure.

Hi Allie:

It is Amy...we were e-mailing each other a few months ago. I just went on-line and see that you are doing good and am so glad to hear that. I go for my next set of scans mid-September....hopefully everything will be ok. I am now going for scans every 4 months since I hit the 2 year mark since my last occurrence. Hope you are enjoyng your summer.
-Amy

hollers said:

Hello, my name is Holly. I'm so glad I found this web site. I felt like I was the only one in the world with Fibrolamellar liver cancer and no-one could relate. I really need to hear other people's stories and how they are doing since this is an extremely rare type of cancer. It's been hard to get accurate info. on it. I'm 32 yrs. old and was diagnosed with it in December 2003 after an ulrasound and CT showed a liver mass. My dr. originally thought it was an ulcer or problems with my gallbladder. I had 1/3 of my liver resected in Dec. 2003. I have a wonderful surgeon. He thinks that he got it all and that I should be O.K. I also see an oncologist who does blood work. I had my first CT at the end of March and everything was clean. My next scan will be in Sept. I'm scared that it's going to come back or show up somewhere else. How is everyone else doing?

I agree, this web site is great. Before I found it...I was looking to talk with others that were experiencing what I was with fibrolamellar. I am doing good. I was originally diagnosed in 1997 and had two reoccurences in my lung/chest since then but everything seems to be ok. I go for my next scan in mid-September. I now go every 4 months for scans. Where do you live? I live in NY. Do you know what type of blood work your doctor does?