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45 yr. old Husband diagnosed with traditional HCC -Stage 4

Posts: 12
Joined: Feb 2012

Hi all. My husband had one tumor removed in 2010 which was believed to be the only one. They told us that this was the fibrolamellar type of cancer with very good prognosis. We had a couple of follow ups and the scans came back clean. We then lost our health insurance coverage. Now, his CT scan shows many tumors of varying sizes throughout the liver. There is also one tumor on the abdominal wall right under the surgical incision site. They are saying it is NOT fibrolamellar but the traditional HCC (primary). They say he is now in stage 4. We live in the Chicago area and are seeing doctors out of Northwestern Memorial. Any other hospitals or doctors you care to refer?

Since we don't have health insurance, we have applied for financial aid through the hospital and are waiting to hear back. We have two young children. I also just started the life insurance application process, and food stamp and medicaid process. My husband is not eligible for social security disability. Any other financial resources?

Can any of you share your experiences with the various treatment options? I don't believe my husband will want to participate in a trial. Any guidance or advice is greatly appreciated.

Worried Wife

Posts: 61
Joined: Feb 2011

Is he a veteran by any chance? I use doctors at the University of Michigan for my HCC and have survived 5 years now with one recurrence two years post initial diagnosis and subsequent resection. U of M is a comprehensive cancer center which is what you want for treatment. There may be a study that he can get involved in at this or some other center if you don't have one in the Chicago area. Studies are generally fully funded and allow you to be on the cutting edge of technology and treatment and are not necessarily a bad thing. I have participated twice now in studies at my hospital and have nothing bad to say about them. Others may have something else to share, though. I will pray for you and your husband that he might get the treatment he needs.

Posts: 12
Joined: Feb 2012

Can you please share to what you attribute your survival? It sounds like the trials helped you. Can you elaborate on what specific drugs or treatment helped you? Any other treatment advice? Are you willing to talk with me by phone?

No, he's not a veteran.

Please help us.

Posts: 14
Joined: Mar 2012

Hey Dori I live in SC helping take care of my dad. I do know I am heading to Il. Thus the 29th of March. My finance is taking me to see a good friend that I haven't seen in 9years. He said I need a break. My friend lost her husband in 2000 from cancer as well. She knows I am taking this very hard. But I can see if she knows any good places for you while I am there. Ill be heading back to SC that following Tuesday. Ill write u back when I get to IL. Take care.


Posts: 6
Joined: Jun 2014


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

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