My husband was diagnosed with primary liver cancer Nov 07. Scans showed an 8.5cm lesion in the right lobe and some other small lesions. Portal vein invasion was interpreted from the CT scan. We were told any treatment, including TACE was not an option. We were told he had a couple of months to live - basically, "go home & die".
A biopsy was also ruled out because of the risk of bleeding (he has low platelet count).
He had follow up CT scans in Jan 08 and April 08, which showed no progression at all in the large lesion, and only one additional small lesion. he is feeling very well - ascites being controlled by fluid tablets and no other symptoms. An MRI with contrast was done in April - there was no further growths or increase in size of lesions. The opinion still was HCC, but we were "lucky" - it was slow growing.
A recent CT scan - June 08 - report says large lesion decreased by 1cm - no new lesions.
Are we really at a dead end? We feel there must be something that can be done. Are there any options we have not been made aware of? What is the prognosis for "slow growing" HCC? No-one seems willing or able to give us any solid information.
there are some novel chemotherapeutic agents that can be used. one of these is nexavar. i addition there are other potential treatments such as RFA of the largest lesion as well Yterrium biospheres. he should really be folowed by a multidisciplinary team. even though it appears that liver transplantation does not seem to be an option, rarelt rescetion can. definitely you should be proactive. is he being treated in a liver transplant center?
No, Jim is not being treated in a liver transplant centre. We live in Brisbane, Australia and he was seen in the gastroenerology outpatients dept of the Princess Alexandra Hospital.. His scans were examined by the team of doctors there, who, we have been told, are the top experts in Brisbane. Follow up "treatment" has been left to our local GP and a nurse from palliative care who rings occassionally. Any further blood tests or scans are initiated by us through our GP.
Jim is 63 and scans also show cirrohsis. Nexavar has never been mentioned - I will find what I can on the net about this, but could you give me the rundown on it? As I said, the opinion from the team at the hospital was it was definitely HCC, there was nothing they could do - "go home and die" was the basic message. We find this very hard to accept - if the tumors are so big and bad, why is he so well? Is it possible that the tumors are benign? (hemangioma)
Maybe we are clutching at straws, but 7 months after the initial diagnosis, he is doing so well, we feel they may have got either the diagnosis. or treatment options wrong.
Please advise. Thank you.
the tumors are unlikely to be benign. nexavar is a new medication recently approved to fight HCC. It has a lot of potential side affects but recent data shows that it may be effective in slowing tumor growth. It is also called sorafenib. You mighht want to try and contact 1 of my former colleagues who is now in Perth Dr Nick kontorinis who trained here as he might be of some further help. i think your husband should be being seen by a specialist and not by his GP alone..
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