Two months ago my husband (67) was diagnosed with HCC that had spread to lymph nodes close to the liver, and also had a clot in the portal vein. (The clot led to the diagnosis).
He has been told that it is incurable, and that he won't be given treatment because the available immunotherapies would worsen his quality of life without offering any benefit in terms of length of life. We don't know what the prognosis is because he doesn't want to know how long he has. He is currently virtually pain free, and although much weaker than he was a year ago, he is still able to potter about and do small jobs.
It just feels as though he has been sent away to die quietly at home. We haven't been given a contact nurse or anyone particular to talk to and I certainly feel abandoned. Is this typical? Is anyone else in this position?
I'm in exactly the same position with liver cancer - I'm bewildered - just sent home to die quietly - no contact nurse, and I'm 83. Too confused to talk about it much. Much love, Dip. Arcaeol.
Thank you for replying and very sorry that you have the same issues. It does make you feel abandoned, at the very least we should have someone we can contact in a crisis. I am going to pester my husband's oncologist and if I get anywhere I will let you know. In the meantime my very best wishes to you and your wife.
HI ! I BEEN DIAGNOSED WITH LIVER CANCER ( 13 BY 9 CM) . SO CAN'T BE SURGICALLY REMOVED. I WILL START CHEMOTHERAPY HOPEFULLY SOON. I FEEL LIKE NOBODY CARES & ABANDONED BY THE WHOLE SYSTEM. IM 54 . CAN'T EAT & DRINK WATER MOST OF THE TIME WITHOUT VOMITING SOON AFTER. LOST ALREADY 8 KILOGRAM IN BARELY 2 MONTHS. SOMETIMES THE PAIN IN MY ABDOMEN AREA IS UNBEARABLE. IM VERY FATIGUED. BEFORE I USED TO HAVE LONG WALKS BY THE BEACH. NOW AFTER A FEW YARDS .CAN'T FEEL MY LEGS. LIKE IN YOUR DAD CASE I FEEL LET DOWN !!! I KNOW IS PLENTY OF PEOPLE IN THE SAME SITUATION. BUT I DIDN'T EXPECT THAT SOMEBODY WHIT A CANCER LIKE MINE BEEN TREATED LIKE....! I JUST BROKE ONE OF MY FINGERS NAILS. BEST WISHES TO YOUR DAD
How are you. I’ve just been diagnosed with secondary breast cancer in my liver. Terrified and very anxious. Do they know how long you’ve had it. I have no symptoms yet but very frigjtened. Love to you x
they found my HCC on the portal vein in september after a routine scan, they declared it inoperable and chemo resistant. I was offered to take part in a trial, and they got funding for SIRT. on 3 jan im getting my liver mapped through my femoral artery to find which arteries are supplying the tumour and block any arteries that may take the microballs out of my liver|. on 21 jan,im back in to get the radioactive microbeads put into the neccessary arteries to surround the tumour, and hopefully kill it. ive simplified it because im a slow typer and its 5.30 AM. i cant find any HCC support groups, so ive joined a US one, a few people over ther have had SIRT and a few have been cancer free for a couple of years. It is a very expensive treatment and they have to apply for funding, but it cant hurt to ask. I lost my wife to cancer, her funeral was 3 years ago today (23 december). im 63 so 67 is not much different
My Dad (55 years old) was diagnosed with liver cancer at the beginning of November (13 cm, not possible to remove). Since then, he hasn't received any treatment or event plan of the possible treatments. He been sent back home to wait, and we didn't get anyone to contact to ask for an update or advice. It has been nearly 2 months, and he feels worse and worse. Going to an emergency doesn't help much. We feel totally abandoned and hopeless. Is it always like that? The other problem is the language barrier. He doesn't speak much English, there are no translators available. Myself and my family is trying to support and be with him as much as we can, but lack of information from the doctors are so awful. Is there anything what I can do to help to get advice or contact to the doctors? I was expecting to have more support and guidance...
Hi. Sorry to hear of your diagnosis. My mum has just been diagnosed with liver/bil duct which spread to the abdomen. We are awaiting a biopsy to see where it began for treatment. I seen online about SIRT. Can I ask how did they discover yours is chemo resistant and got the clinical trial? Hers is inoperable also. Hope you don't mind the questions.
I'm in exactly the same position with liver cancer - I'm bewildered - just sent home to die quietly - no contact nurse, and I'm 83. Too confused to talk about it much. Much love, Dip. Arcaeol.
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