My father has been diagnosed with HCC from a scan. The fact it appears to be in a vein means he’s refused a transplant and given palliative care only.
I sought some second opinions in Germany and Italy and they both looked at the same scan and do not believe it’s cancer. They recommended a biopsy.
We’re now in a position where my father has been refused any treatment in the U.K. (he’s child pugh C) but the reason (the HCC) is called into question.
Has anyone else faced this or a similar situation? I’m feeling pretty annoyed my dad hasn’t been privilege to a proper diagnosis, his medical team have effectively closed ranks on us.
Any insight or stories would be greatly appreciated.
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LisaH123
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Hi Lisa, sorry to hear about Dad's diagnosis and the situation you find yourselves in.
I take it the scan in question is an MRI scan which would be deemed the gold standard test for seeing what any lesion in the liver actually is. A cirrhotic liver sadly is more at risk of HCC which is why patients with cirrhosis undergo 6 monthly ultrasound scans with follow up MRI to identify what any odd lesions actually are (my hubby has twice undergone MRI after his normal scans due to new lesions appearing though thankfully his have turned out to be completely benign).
In the UK at least it is quite rare that they would carry out a biopsy on a potential liver cancer. Due to the massive risk of stray cancer cells escaping during the procedure and thereby seeding themselves elsewhere in the body and I guess the location of Dad's tumour being in a blood vessel would make this an even greater danger.
I assume their tests for his cancer would have also included the tumour marker blood tests - Alpha Fetoprotein. They don't just write people off based on a single test alone.
Sadly the tumour (of whatever type) being located in a vein probably interferes with a potential for transplant operation too & probably makes other treatment options difficult/impossible. There are very strict criteria regarding the size, number and location of tumours when transplant is being considered.
Really sorry you find yourselves at this point, the BLT has information on HCC and also Planning for the Future stuff which may provide more information.
Thank you for your kind response Katie. I am aware of everything you’ve said and understand the picture generally. However his AFP levels are not raised… and like I said, other doctors have raised concerns the scan is not conclusive.
If it is a benign nodule it is not a barrier to transplant. I’m just concerned my dad is being passed to palliative care unnecessarily and being misdiagnosed which is where my question comes from.
How old is Dad? Is he under one of the transplant hospitals for his care?
They would be best placed to carry out further exam into this tumour.
If this non-transplant decision has been taken by a local hospital and not one of the t/p units then i'd certainly push for referral (2nd opinion in this country).
AFP isn't raised in all cases of liver cancer, indeed we've had forum members who have had transplant for other causes and it's only been when they've looked at the removed liver they've discovered they also had liver cancer.
I totally understand you wanting to fight all the way for Dad.
There are people who have been given diagnosis they do not agree with and then go and get a transplant abroad, that would probably be in Turkey as it is the closest nearby country where basically they will give it a shot if you can afford it and you are not completely hopeless.
The only thing is they won't do is put you on any transplant list. You have to come with a willing living donor who will donate. The reason is simply that there would be riots in the streets if people found out their countrymen's donated livers were being given away to "rich foreigners".
And it will cost money that you will have to pay, I don't see how else the financials could be taken care of besides self-pay. India is even cheaper and also with a great rate of success, it's just much farther of a plane trip to make. It's also a bit complicated in that you will have to do some tests at home, some when you arrive, etc. But people do it - there are companies that help organize such travels.
Youtube "Liver Transplant in India" and "Liver Transplant in Turkey" and watch the presentations.
Hi Lisa
I am sorry this has come to you now. It is cruel news at a time when you most needed hope.
I cannot tell you what to do, only you can decide that. But as Katie said, this diagnosis would probably be made from several results not just a scan. If it were me, I'd contact the consultant and ask what results led to this conclusion, then I'd ask if there was even the tiniest possibility it may not be cancer. I would ask the consultant, if it was proven that it is not cancer would that regain my fathers place on the transplant list (because then I'd have the information from which to decide a course of action).
If a biopsy that showed it was not cancer would get him back on the list, I'd go to France, Germany or Italy (or anywhere) and get the biopsy... but if nothing I could do would get him back on the transplant list, I'd have to sit down with my father and discuss options and see where to go from there.
My own thought are that if terminal inoperable cancer was obvious on a scan then additional invasive tests might cause more harm than good.Both mentally and physically.
As for traveling abroad for treatment, the risk of donor and recipient both coming back in a bodybag must be huge!
I can't understand why those posts are allowed to remain.
Just to also comment on the reply from another member on the thread about seeking out companies that will help organise transplant abroad. We would suggest to be very cautious of such companies and to take safe clinical advice from your dad's own specialists.
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