I was told by a Harley street Consultant, my best way of a cure was a liver transplant, I have been diagnosed with HCC cancer along with portal vein and cirrhosis , I feel very fit and well and when seeing the specialists they thought I was a lot younger than my 73 years But it seems my age is an issue, has anyone else had this problem ? I have had TACE treatment which went really well, it has shrunk the tumour and killed the cancer, has anyone else had the same problem ?
liver transplant , I have cirrhosis an... - British Liver Trust
liver transplant , I have cirrhosis and liver cancer but when I spoke to the specialist he said I would not be eligible for a transplant, I
Whilst 'advanced age' is seen as a relative contraindicator to transplant it is supposed to be investigated on a case by case basis. Someone can still remain very fit at 73 nowadays and if your heart, lungs and overall extra hepatic fitness is good then you should at least be seen by one of the t/p centres for potential assessment.If you aren't under specialists at the Royal Free or Kings which cover t/p in London that's what you need to push for. We met a chap 70+ with liver cancer due to haemochromatosis during hubbies assessment at Edinburgh and have met a lady at BLT support group who was transplanted age 72.
It's a multi disciplinary meeting which decides whether to list or not. Push for referral to one of the transplant centres for their view on this.
Best wishes,
Katie
Dear [Willow1950
If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers) and our next Liver Cancer virtual support group is April 12th at 11am.
If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here
britishlivertrust.org.uk/vi...
Best wishes
British Liver Trust
I’m 75 with similar symptoms haven’t considered a transplant because I would prefer a younger person to have it. However I’m going to follow your post with interest. All the best
Hi Willow
I am 66 and have been treated by liver resection for a 7cm tumour in early 2022 and I also have cirrhosis and portal hypertension. Following the resection I was advised that I was cancer free but that the kind of HCC I have was very aggressive and likely to recur.
In November last year following scans, they found eight new tumours and I am being treated with palliative immunotherapy. My liver team and my oncologist are adament that a transplant will not be offered and could indeed be detremental.
I mentioned to the team (liver consultant) that much of the correspondence and group conversation at The British Liver Trust was about transplant and I was told that in my area (Wales) only about 2-3% of patients with liver disease are referred for transplant.
I hope that this is not a gloomy story for you but from what I was told, age was not a factor in making the decision not to refer for transplant.
Do talk to the nurse at The Liver Trust, she was very helpful in explaining why transplant is often not a consideration for many patients with HCC.
Best wishes to you X
I am not sure that what you've said is right. I am in Wales (SE,) 65, female, and had a TP at QE Birmingham last September due to cirrhosis, non-alcohol related. My understanding is that Wales patients are just as likely to get a tp as anyone else. I could be wrong! Best wishes to you.
The decision to not list in your case is likely to be due to the number of tumours you have - there are strict guidelines on the size and number of tumours due to the risk of seeding the cancers.
This is the assessment/listing criteria for HCC.
A lesion must be seen on 2 forms of imaging with typical characteristics to count as HCC. The size
of a HCC will be the larger of the two if there is a discrepancy. The listing criteria at present are:
Single tumour<5cm diameter or
Up to 5 tumours all < 3cm or
Single tumour between 5 and 7cm with no evidence of progression (<20% volume
increase) over a six month period. Locoregional therapy or chemotherapy may be
given at this time.
AFP <1000 U/l
A contrast CT scan will be carried out on ALL assessments. This can, and if possible
should, be done at the referring hospital. The duty radiologist will report the scans here
during the assessment week.
MRI scan only for patients with suspected or proven HCC based on the initial CT scan.
Patients without HCC will not have an MRI scan
TACE (or RFA) will be offered to all patients on the waiting list with multifocal tumours, and
all solitary tumours > 4cm, unless they have contraindications, eg poor synthetic function,
or are likely to be transplanted very quickly.
Patients on the waiting list with diagnosis including HCC should undergo alphafetoprotein
(AFP) measurement at every clinic appointment and CT scanning every 4 months.
Extra hepatic metastases should be sought with a chest x-ray, CT scan of chest and
abdomen before listing.
Hi Willow
I’m so pleased for you that you got your transplant.
I don’t think I was very clear in my post. I’m certainly not singling out Wales as specifically being difficult for referrals for TP. I only have experience of Wales and it was my consultant who quoted the 2-3% - it may well be better or worse in other parts of the UK, I don’t know.
My consultant’s point is that TP is relatively rare for liver patients and being listed for TP is not always an option for patients with HC ( liver cancer).
The criteria is not determined by age or region or nation but by viability of a successful outcome.
Best wishes X