My mum, my best friend

[Mare-M]

Hi all.

My gf found this site for me & im grateful she did.

I’m at a bit of a loss. I’m frightened,overwhelmed with so much information (some conflicting).

My mum has decompensated liver disease. Autoimmune. She has Ascites which is drained about once a fortnight.

We have just completed assessments for a liver transplant but not yet on the waiting list. CT scan showed a lesion.

We need to repeat the test in two weeks as it will be two months since the last CT to confirm whether there are multiple lesions or the current one has grown in which case they’re saying they will not transplant.

I guess I’m looking for people in the same boat, any advice for hope.

In other countries do they also not transplant if there is a lesion found ?

Has anyone found a way to shrink the lesions?

Any ‘natural’ alternative medicine that has helped ?

Up until a year ago my mum was working, full of energy, full of life, zest. The most giving, generous hearted adored person you would ever meet. I cannot accept this being it for her..

Thank you for taking the time to read this. Any feedback would be much appreciated .

Marianne

[Chelle_]

Hi Mare-M, I am sorry you and your mum are going through a rough time. I have 22 lesions on my liver at the moment. All benign for the time being, they have been there a few years. I am being transplanted because of other complications. My father in law on the other hand has one lesion and is a malignant tumour. He will have that part of his liver cut away along with the Lymph nodes, some radiotherapy and that's it really. He will not be allowed to be put on the transplant list, because of the cancer.

However saying that everyone is different and you will find that out as people tell their stories.

My advice would be eating as clean as possible, exercising, abstaining from alcohol and not smoking, try to look on the positive side of things, whatever it is they have it in there sights and will hopefully have a route to recovery mapped out. There are so many things that people can deal with now and more amazing things that doctors can do.

Be positive. We are a fountain of knowledge use us as you wish! No question is silly.

Best of luck!

[Mare-M in reply to Chelle_]

Hi Chelle, thank you for your reply.

My mum doesn’t drink or smoke, never really has. Trying to eat as clean as possible, taking vitamin supplements..

Her lesion is apparently HCC which is cancer. They can’t cut part of the liver because of the advanced cirrhosis.

This is why I was wondering whether it is common practice in other countries to still be ellegible for transplant when there is HCC present.

Thanks for your well wishes.

Glad yours are benign.

[AyrshireK in reply to Mare-M]

Hi Marianne, the problem with a potential transplant when HCC is present is the risk of seeding the tumour around the rest of the body. They will transplant in UK with or due to HCC but there are strict criteria as to the size & number of tumours present owing to the risk of spread. Sometimes they will try to shrink tumours via procedures such as TACE (Transcatheter arterial chemoembolization (also called transarterial chemoembolization) and if they can get them within size transplant may still be an option.

This is the HCC criteria for transplant at Edinburgh and probably the same for all the UK transplant centres as they come under a national system.

"The criteria for liver transplant for HCC have been revised because the Milan criteria which have been adopted in the UK for many years excluded some patients with a greater than 50% chance of survival at 5 years following transplantation, the benchmark used for transplantation for benign disease. The lesions require to be identified on both MDCT and MRI scanning and have typical characterisation to count as HCC. This means an arterialized focal abnormality with portal phase washout on MDCT or Gd-enhanced MRI. Tumour rupture, extrahepatic spread, AFP >10,000 and macrovascular invasion are absolute contra-indications to transplant. The new listing criteria are as follows:

1. a single tumour ≤ 5cms diameter.

2. up to 5 tumours all ≤ 3cms.

3. a single tumour 5-7cms which shows no significant progression (volume increase <20%, no extrahepatic spread and no new nodule formation) over 6 months (during which time locoregional therapy may be given). "

Fingers crossed Mum's tumour is small enough or treatable to potentially allow her to go forward to transplant.

Thoughts with you.

Katie

[Mare-M in reply to AyrshireK]

Hi Katie,

Thank you very much for your response. This is the part I’m confused about “seeding the rest of the tumour around the body”

If they’re taking out the complete liver & replacing it how can there be a chance of reoccuramce if the lesion/cancer has not spread anywhere before transplant ?

Thanks for your time.

[AyrshireK in reply to Mare-M]

Because the liver is being messed about with and bits being cut off during transplant there is a risk that some of the cancer cells can escape into the blood stream and therefore spread round the body thereby seeding it elsewhere - there is obviously greater risk of this if the tumour is bigger or closer to blood vessels etc.

Sadly we have a chap on here who is post transplant & all was going hunky dory. Only after biopsying old liver after the transplant they found it contained cancer and sadly some weeks post transplant they discovered he did in fact have cancer which had seeded from this liver cancer. Fighting cancer post transplant is very difficult due to you having to take immune suppressants.

Katie

[Mare-M in reply to AyrshireK]

Ok thismakes sense. Thank you for explaining it to me clearer than unfortunately our doctor.

I’m sorry to hear about the man on here post transplant. Hopefully he can fight it..

I guess we have to wait and see what the follow up scan indicates..

Thanks again

[Chelle_ in reply to Mare-M]

I know that in some cases they put forward those with HCC for transplant. Have you had a meeting with the oncologist to discuss further treatments?

[Mare-M in reply to Chelle_]

Not yet. We are waiting for the second CT scan for comparison and see where we stand..

[Chelle_ in reply to Mare-M]

Well my fingers are crossed for you. My father in law is having his second scan on Monday followed by a fitness test to see if he can go for surgery. Fingers crossed for your mum!

[Mare-M in reply to Chelle_]

Thank you very much Chelle.

All the best for your father in law and yourself aswell

[Andiball]

Hi, for quite a long time I took Sumerian milk thistle, its natures liver detox . I think its Sumerian but its deff an s for the 1st word. But please talk it over with ur doctor 1st. And get their approval. Good luck

[Mare-M in reply to Andiball]

Hi Andiball,

Thank you for your reply. Yes Mum has been taking Milk Thistle on and off for quite some time.. I’m not sure that it’s much help at this stage? Thanks for your advise though

[peteingloster]

Afraid I have no medical knowledge only the fact I had a transplant last year and am doing great now so please don't worry about that aspect, I haven't any figures or readings for you but I was given 18 months to live with about 6 months to live when I had my transplant so they will Tx when absolutely necessary. BUT I would say absolutely NO, NO, NO to any herbal remedies or alternative medicines see your GP is a must all our love and best wishes for Mum

[Mare-M in reply to peteingloster]

Hi Peteingloster,

Thank you for your well wishes.

I’m glad to hear you’re doing well.

Did you have HCC?

[peteingloster]

Not sure what HCC is, therefore I can only think no I didn't. All the best

[Mare-M in reply to peteingloster]

It’s a lesion. cancer. It occurs a lot with end stage liver cirhossis

[Danisleigh]

My son had a transplant 11 weeks ago as he had a HCC. It was just over 6cms and was a single tumour. They did offer TACE to keep the tumour within limits while waiting for transplant as if it had grown much more he wouldn’t have been eligible. As it happens he only waited 18 days on the list. He is doing well at the moment but I do sometimes worry about it having spread.

[Mare-M in reply to Danisleigh]

HI Dani thanks for sharing.

I’m glad your son is doing well. Is there no test to tell if it has spread ?

[Danisleigh in reply to Mare-M]

I don’t think so but we had a letter yesterday and they have contacted an oncologist for advice on how to monitor him going forward after my husband asked in clinic on Monday so at least they are doing something.

[Mare-M in reply to Danisleigh]

Ok it’s good that they’re on top of it. Good luck with the oncologist. Please keep me posted