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Fibrolamellar Liver Cancer

jevans
Posts: 2
Joined: Apr 2003

My daughter was diagnosed with fibrolamellar hepatocellular carcinoma in August, 2000, when she was 19 years old. She had a liver transplant in October, 2000, and did fine until a metastacies of this same cancer was found on her lung in Sept of 2001. She had a lobectomy in Feb of 2002. She had a grapefruit sized tumor removed from her pelvis in Feb of 2003. I am looking for others who have experience with this kind of liver cancer. It is rare and we have not been very successful in finding doctors who know about this cancer, let alone how to treat it. The basic treatment has been to wait for a tumor to occur, then surgically remove it. We would like to be more proactive and any information to help us do this would be so greatly appreciated.
Thank you,
Julie Evans

waterbug
Posts: 21
Joined: Apr 2003

Just an update to ask how your daughter is. Our daughter is getting her first post-op scans this week since her surgery in February. Did you get any suggestions about fibrolamellar cancer? I like you, find it hard to find out much about it.

waterbug
Posts: 21
Joined: Apr 2003

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
Posts: 8
Joined: Jan 2004

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?

waterbug
Posts: 21
Joined: Apr 2003

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
Posts: 16
Joined: Jan 2004

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.

akauf
Posts: 8
Joined: Jan 2004

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
Posts: 16
Joined: Jan 2004

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?

waterbug
Posts: 21
Joined: Apr 2003

How are you doing Allie?

AllieMatt
Posts: 16
Joined: Jan 2004

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.

waterbug
Posts: 21
Joined: Apr 2003

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.

aykt36
Posts: 28
Joined: Jun 2010

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?thanks

Tammya's picture
Tammya
Posts: 8
Joined: Jun 2004

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.

waterbug
Posts: 21
Joined: Apr 2003

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.

AllieMatt
Posts: 16
Joined: Jan 2004

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.

Tammya's picture
Tammya
Posts: 8
Joined: Jun 2004

My whole treatment and operation was completed in South Africa. I have never been to the US, but find this site wonderful and so I visit it.

I am positive about the results of my treatment and in my heart I know that all will be OK, but it is so hard sometimes not to worry. One day you will feel happy and positive and the next day you are completely broken down, that is when we need sites like this and to surround ourselves with positive people.
Waterbug, you are right, even though I am the person with cancer, I know that it definately is harder for the caregiver - emotionally - especially if the caregiver is the mother!
I can only TRY and imagine what this has been like for my mom, she has stood by me every second of every day, every treatment, every scan, every day in hospital, without my mom I might not have made it through this.
Even though your daughter does not talk about the cancer a lot - I am sure that your support means the absolute world to her. I have difficulties expressing how I feel to my mom and how much she means to me, because everytime I have something to say, I break down into tears - maybe your daughter feels the same way.
I am back at work full time now and feeling very strong, it feels good to be back in a normal routine.

hollers
Posts: 7
Joined: Jun 2004

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?

AllieMatt
Posts: 16
Joined: Jan 2004

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.

clicata
Posts: 2
Joined: Aug 2004

Hello. I am hoping to find information regarding my brother-in-law. He was recently diagnosed with Fibrolamellar carcinoma also. His tumor is 12 cm. He is 39 years old. He has a three year old and an 8 mo. old. We are told that his tumor is unresectable and that his only option is a transplant. I am having a lot of difficulty obtaining information regarding the outcomes and prognosis of the proceedure. His bone and lung scans came out negative, but he did have a small satelite tumor on the other side of the liver. We are in Southern California and have switched from UCI where doctors said only experimental treatment was left.. to UCLA. They seem to be optimistic that a transplant will save him. I am happy to hear that your scans are clear. I can understand your fears. He did have a chemo-embolism (injected chemo into the tumor) but it did not shrink the tumor at all. The treatment itself was horrible and he has lost about 50 lbs and is trying to rebuild. Any information regarding a transplant would be very helpful.

akauf
Posts: 8
Joined: Jan 2004

I am so sorry to hear about what your brother-in-law is going through. I do not have any info on transplants and fibrolamellar. Is he scheduled to have a transplant or is there a waiting list? I was first diagnosed with fibrolamellar in 1997 and had two reoccurences since in my lung/chest area but each time they were able to go in and surgically remove the tumors. Chemo and this type of tumor after much much research does not seem to really work. Sorry I could not be more helpful with information but I wish your brother in law the best. Please keep me updated. Is he comfortable with the dr's at UCLA?

akauf
Posts: 8
Joined: Jan 2004

I am so sorry to hear about what your brother-in-law is going through. I do not have any info on transplants and fibrolamellar. Is he scheduled to have a transplant or is there a waiting list? I was first diagnosed with fibrolamellar in 1997 and had two reoccurences since in my lung/chest area but eeach time they were able to go in and surgically remove the tumors. Chemo and this type of tumor after much much research does not seem to really work. Sorry I could not be more helpful with information but I wish your brother in law the best. Please keep me updated. Is he comfortable with the dr's at UCLA?

akauf
Posts: 8
Joined: Jan 2004

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

akauf
Posts: 8
Joined: Jan 2004

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?

hollers
Posts: 7
Joined: Jun 2004

AllieMatt, I'm glad your last scan came back clean. I'm going in 3 weeks for my next scan, it's been 6 months. My oncologist does some type of marker for my liver enzymes and he does an alfa-feta protein test. I too, still get pains and pinching in my abdomen area, especially if I've been picking up my son alot. I live in Waukesha, Wisconsin which is a suburb of Milwaukee.
Clicata: I'm so sorry to hear about your brother-in-law. Why can't they do surgery? My dr. also told me that chemo does not work on this type of cancer. I hope he gets another opinion. Do you think he has a good doctor?

AllieMatt
Posts: 16
Joined: Jan 2004

Holly - I am in Minneapolis. I have family friends that live in Waukesha - the Thiels. It is a big place and I am sure you do not know them, but you are in the same area as me. Where was your surgery? Have you had your scan yet? I have had 4 scans since my surgery to remove 1/2 of my liver on February 2nd. They have all been clear - so I am happy about that. I wish you the best. I am glad (not for the pain) that you are still having a bit of pain as well. I feel like it is just me - that if I was in better shape or something then it would not hurt. By then end of the weekend I am exhausted and holding my side where my liver was removed. What does your scar look like? Mine is like a rainbow arch from the far right side of my side to a bit over the middle. All red and just so pretty! It matches my c-section scar and my 3 little scars from removing my gallbladder! How old is your son? Mine is 3 1/2 and my daughter just turned 1 last week.
Keep me posted on your scans.

hollers
Posts: 7
Joined: Jun 2004

AllieMatt - I had my surgery at Waukesha Memorial Hospital. Unfortunately, I had the operation on Dec. 22nd, so I was stuck there for Christmas. I go for my next scan on Sept. 21st. I usually find out the results within 3 days. My scar looks like a rainbow arch too. It comes down lower on the right side. I tried to put this ointment called Mederma on it, to help the scar look better, but it made my skin itch and burn, so I guess I'll just leave it alone. My oldest son is 5 - he just started Kindergarten and loves it. My baby - he's really not a baby anymore but a toddler, just turned 2. I pick him up alot, so my side still hurts sometimes and I have to hold it or take some Tylenol for the pain. I'll let you know what the results are when I get them. Take Care!

livin
Posts: 319
Joined: Jan 2003

Hi everyone looking for any info about liver surgery. I am newly diagnosed on Sept 8th had biopsy Friday the 10th. Doctors plan surgery this week I hope. This is my third Cancer. Breast 1999 Colon 2001. Some times I feel Doomed than other days I feel I can beat this. I know one thing I will never give up. Is there a lot of pain? Will my diet change Was Chemo rough. Colon Cancer I did not get sick ate very very well gain 30 pounds. But with this Liver Cancer no appetite but hasn't lost weight yet. Just looking for some Ideas. I know everyone is different. Thanks Livin

AllieMatt
Posts: 16
Joined: Jan 2004

Holly - How did your scan go? I hope things are going ok.
I hope things are well with everyone else too and everybody is still going strong.

hollers
Posts: 7
Joined: Jun 2004

Hi AllieMatt and everyone!
My last scan was clear, my doctor said everything looked really good. What a relief! My next one will be in 6 months so sometime in March. The pain in my side is starting to go away now too. I go to the oncologist next month for blood work. I feel positive now that I had good news. I was really worried and anxious the last 2 weeks. When is your next one?

AllieMatt
Posts: 16
Joined: Jan 2004

I had a scan yesterday and it came back clear. Another releif. I am almost to my 1 year point. February 2nd was my surgery. I will be glad when I reach that point. My next scan is in March and then they will go to every 6 months from there. I feel relief after every clear scan, but am still very cautious and almost "waiting for the other shoe to drop". I would never want an un-clear scan, but I almost expect one and if I am going to have one, I want to get it over with. I somehow always have the feeling "well, maybe with the next one I will get the bad news". I hate feeling this way, but I do. Does anyone else feel that way? I hardly ever think about it, but when I do that is how I feel. I am still having a lot of pain where my incision is and aksed my oncologist about it. He said that there could be a nerve that grew into the muscle or the bowel or the scar tissue that is causing it. There is no way to find that out unless they open me up and we both don't want to do that. So - he said time should make it feel better and if it does not then we can look at further options. It is almost un bearable sometimes and makes me feel like I am 80 years old. He gave me pain medication for when it gets really bad. Besides that I feel great.
Hope all is well with everyone else.
Holly - you are almost at your 1 year - I hope things are going good.
We all have a lot to celebrate this holiday season.
Cheers.

waterbug
Posts: 21
Joined: Apr 2003

Allie - I am so happy to hear your news! My daughter doesn't get another scan until May 2005 which will be a year between scans. February 6th it will be 2 yrs since the first surgery. It makes me nervous but I keep "letting go" -we trust the doctor. The cancer is slow growing and at a year and a half had no return. We know there are no guarantees but there never were to begin with - I think there is only to go forward in Faith and try to fulfill God's purpose for our lives. I am sorry about the incisional pain. I hope it lessens.
God Bless :)

hollers
Posts: 7
Joined: Jun 2004

Hi Julie!
I'm so happy that your scan came back clear!! What a relief!! I've been thinking about you. I've tried to email you but my internet wasn't working. It will be a year on Dec. 22nd since I had my surgery, and the pain in my side just went away, so don't feel bad. I was supposed to have my next scan in March, BUT I found out I'm pregnant! I'm due in early July so I'll have to wait until then for my next one. My doctors are not concerned at all. They both said I should be fine and not to worry. Now I'm just trying to get over this "pukey" stage and take care of my two boys.

I hope everyone else is doing well too.

Happy Holidays!

waterbug
Posts: 21
Joined: Apr 2003

My daughter now has a breast lump. The doctor thinks it is probably fibrocystic and will do a lumpectomy in a few weeks. Does anybody know if this can be connected to fibrolamellar?

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

You may want to contact the American Cancer Society's National Cancer Information Center. They may be able to provide you with information on this topic. Cancer Information Specialists are available 24 hours a day, 7 days a week at 1-800-227-2345.

I hope this information is helpful.

Take care and be well,

Dana
CSN Dana

AllieMatt
Posts: 16
Joined: Jan 2004

Holly -
I just read this! Congrats! I am so happy for you! 3 kids huh! You are brave. We think about 3, but I think we are set on our 2 for now. I did ask my doctor just in case what he thought and he said that he would recomend waitng, but it would be fine if I did get pregnant he was sure. Are you considered high risk at all? Are they doing anything different? I am curious about that. HOw is it affecting houw you feel? I would think it may hurt a little more once you start to get bigger if it stretches your scar at all? Maybe not. You will definitly have to keep me posted!
I have another scan next week. I hope this one is clear as well. it will be a year since my first follow up scan so I will feel even more releif after this one. I still have a little pain, but I changed my diet and added some exercise and it has helped a ton. I am not taking any more advil and Tyelnol every day now at least.
I am so sorry that it took me this long to answer you! Please let me know how you are feeling and keep me posted. Are you going to find out what you are having? My best friend had 2 boys and she just had a girl a year ago. I would love another boy! My little girl is much more difficult so far than my boy was and she is only 19 months old!!!!!
Talk to you soon.

Julie

AllieMatt
Posts: 16
Joined: Jan 2004

Hey everyone and anyone new who is researching this type of cancer: I just had another scan. I am now at 1 year post op and I was clear again. What a releif. My doc said that chance of re-occurance now is very slim. He wants to see me again in 6 months. I know there is always a chance it spread somewhere else, but so far so good. I just wanted to let people out there know some good news.

patc99
Posts: 2
Joined: Mar 2005

It is wonderful to actually hear from others who have been diagnosed with fibrolamellar hepatocellular carcinoma. In 10 years of searching, I have never heard of another person who has dealt with this. I was diagnosed at 33 years of age in December, 1994, and had a resection of 60% (entire right lobe) two weeks later. My liver specialist at the time had only heard of one other patient with this disease. No other treatment was avaialble at that time, and it sounds as if that has not really changed much. I've been told to have ct scans every two years for the rest of my life. The last one was last December, on my 10th anniversary - and was clear. Thanks for this site, and the opportunity to meet others...

AllieMatt
Posts: 16
Joined: Jan 2004

Patc99 - what an inspiration you are! It is so great to hear from someone who has been through this a while ago and has had no re-occurences since. It really makes me feel good to hear that. Thanks for the note! Do you have any risidual pain at all? I still have some and wonder if it is just something I will need to learn to live with? Thanks again for posting!

patc99
Posts: 2
Joined: Mar 2005

I'm glad you found my story positive. I'm still so happy to have found others... No, I really don't have pain any more, although it took a year or two before I was really comforatble physically. Everything just needs to find it's place again! I do get an ache along the right side of my scar when bad weather is coming, which is as or more accurate than most weather forecasts. It took longer for some symptoms to disappear, than for the surgical healing.

I'm wondering how much more is known now than was then. I was told that it was a non-metastesizing, japanese form of cancer, found usually in Japanese men with AIDS or hepatitis, except in the U.S., where it is usually found in women in their 30's. And that it responds best to surgery. It seems from what I'm reading here that this is not all true.

AllieMatt
Posts: 16
Joined: Jan 2004

I have heard the same things as you about the cancer being non-metastestizing and to be found in younger women and it does not respond to chemo or radiation and surgery is the only option. Surgery worked for me and sounds like it did for you as well. My pain is much better now since it has been over a year. It still aches sometimes, but not as bad as it was before! I wish you continued good health!

AllieMatt
Posts: 16
Joined: Jan 2004

Just wanted to let you all know that I had another clear scan on Wednesday. It has been 21 months since my surgery to remove 1/2 of my liver due to Fibrolamellar Carcinoma. My oncologist is very optimistic that I will remain clear although he does want another CT scan done in 6 months (March 2006). After that I will go yearly until we are both comfortable with me stopping.
Hope everyone is doing well.

akauf
Posts: 8
Joined: Jan 2004

Hi-

So happy to hear your good news! That is great! How are your kids and family doing? I'm doing ok. I had a scan in August and everything looked ok which I was sooo relieved about because the scan I had just 3 months before was suspicious. It has now been 3 years since my last re-occurrence. So happy! I go now every 4 months for the CT scan. Good to hear from you.

hollers
Posts: 7
Joined: Jun 2004

AllieMatt,

Great news!! I'm so happy for you! Now you can breathe a sigh of relief and have a wonderful Spring and Summer!! I'm doing well, almost 6 months pregnant...I'm feeling well. I found out it's another boy! Yikes...3 boys! Anyway, I was due for a cat-scan this month but now I'll have to wait until July. My doctor's are not concerned and they are treating it as a normal - not high-risk pregnancy. :-)

Patc99 - Thank-you for posting your message! It gives me hope and inspiration knowing you've been clear for 10 years!

AllieMatt
Posts: 16
Joined: Jan 2004

hollers - congrats to you on having a good pregnancy and for the 3rd boy! I would love to have 3 boys - not that I would trade my girl for anything, but if I were to pick one sex it would be all boys. Think of how much fun they will have growing up together! I think we are done having kids, but part of me will always want 3! Good luck and keep me posted!
Julie

waterbug
Posts: 21
Joined: Apr 2003

It's been awhile since I posted. I was diagnosed with breast cancer in March. I just completed all of my treatments. Our daughter's scan showed a recurrence of the fibrolamellar in May: 3 tumors in her abdomen and 2 tiny ones in her left lung. She has been in a clinical trial since July and maintaining. The last 2 scans showed no shrinkage but no growth. We are keeping faith, love and laughter as mother-daughter cancer patients. The hero is really my husband/her dad! I am excited to hear about all of the great news ...good scans and babies. Happy Holidays to all and a great 2006!! :)

advocatemomma
Posts: 2
Joined: Apr 2011

I am Dawn Edwards from California. My son was diagnosed in 2001 with the same Cancer. He underwent a liver resection and then metesticias to his lungs.He has a tumor in his right lung and now the peritoneal cavity and another found in his pelvis As a mom, I am sure your are overwhelmed with many feelings regarding your daughter, I know I am for my son.

Julie, if you ever feel the need to talk with someone who knows what your going through, please let me know. I will be happy to give you my phone number.

AnnaA
Posts: 6
Joined: Jun 2014

Hi,

I live in New South Wales, Australia. My brother has recently undergone his fourth operation for Fibrolabellar. His first was in 2007. The last three have been in the last 14 months. After his most recent surgery the doctor has said they can't do anymore surgery :(

I am now on a search to find other patients (particularly in Australia but not restricted to), doctors, families, anyone with a connection to this cancer to share stories, treatments, information and anything we can to help each other. I have started a blog on blogspot under the name Fibrolamellar Australia with my first blog attempt called 'The Beginning' outlining my brothers story with this cancer. I have also started a Facebook page called Fibrolamellar Australia and a group under the same name, all in the hope of connecting people and information. At the moment, we don't know of any other current Fibrolamellar patients in Australia apart from my brother.

Please have a look, like and share if you would and please help me connect people together. There is such a small amount of information out there and it isn't well connected. Perhaps this way we can join the dots and get our loved ones some help that works. 

 

Thank you

DeborahinTexas
Posts: 1
Joined: Aug 2014

Hi Anna,

My 32 year old son was just diagnosed with Fibrolamellar last Thursday and we are still reeling with shock and grief. I discovered online a foundation in Vermont America called FCF.org. It was really good to find others conected by this terrible disease and some stories were truly inspirational. According to FCF, it's quite rare with only 200 cases wordwide diagnosed every year. Again, according to FCF, there are 2 types of Fibrolamellar, 1 being very aggressive. 5 year survival rate if tumor resectable is >76%.

Memorial Sloan Kettering Cancer Center has specific reference to fibrolamellar liver cancer on their website. This information addresses many frequently asked questions, is very comprehensive and includes sections on symptoms, diagnosis, risk factors, and treatment options:

http://www.mskcc.org/cancer-care/adult/liver/fibrolamellar-hepatocellular-carcinoma-fll-hcc 

I think research is very important and am planning to contact hospital pathology Monday to see if any tumor specimen is available to send to Rockerfellar University Cancer Research in New York. This is some information from their website:http://fibrolamellar.rockefeller.edu

The first samples of donated tissue are now being used to characterize the genomics of the disease.  Already, we are seeing that the DNA, RNA, and proteins of these samples, are, in fact, altered in fibrolamellar cells as compared to normal, adjacent cells.  We are also seeing that each fibrolamellar sample has different mutations.  We still need many more samples to discover the important “driver” mutations of this disease.

The Fibrolamellar Cancer Foundation (www.FibroFoundation.org) has been actively supporting clinical and basic research in fibrolamellar since 2008.  They are sponsoring patient activities, funding the first clinical trial for fibrolamellar, and organizing a summit of clinicians who treat fibrolamellar.

A group recently formed by patients and families called the “Fibrolamellar Registry” (www.fibroregistry.org) is organizing a patient registry—a database where patients can store all of their medical records.  Patients will be able to use this registry to easily transfer their records from one place to another. De-identified patient data will allow for population-level research.  The Fibrolamellar Tissue Repository at Rockefeller is collaborating with this group to facilitate linking patients’ records with their tumor samples.

We all have to work together, thank you for your efforts!

 

Deborah

 

 

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