No treatment no transplant nothing

[eekk]

My family member got diagnosed nearly 3 years ago, after a quick couple of rounds of tace which the doctors decided to discontinue he was sent home and nobody checked on him again and he was fine with no complications and no hospital visits for another 2 years until he began to feel in pain.Nothi g like spread or much growth or anything has shown on scans yet due to pain doctors just dope him up on opiods and show him hospice no transplant no treatment and no involvement all these years when before now he was clearly well enough for transplant.Is there anywhere that does it private or second opinion?

[AyrshireK]

Hello again eekk, sorry there has been no positive progress in your loved ones case. Sadly going back to your earliest posts transplant was never an option as there were I believe too many and too big tumours to allow transplant. TACE has obviously not shrunken these enough to make transplant any more of a viable treatment option. Whilst there are the stories of folks who have had multiple tumours found post transplant that were not identified before the liver was removed the UK transplant process does have rather hard and fast rules as regards the number, location and size of tumours that would allow transplant to go ahead. Sadly with tumours that are too large, too numerous or sited at crucial points within the liver then transplant would run the risk of seeding these tumours (sending cancer cells around the body). Once this has occurred then treatment post transplant is very difficult since the patient is on immune suppressants to stop the immune system rejecting the transplanted organ, the immune system thus being damped down meaning it will also struggle to fight off any seeded cancers so despite having a new liver the patient may in a short space of time also find themselves fighting the battle against other cancers.

It is awful that such decisions have to be made but they do make them in the patients best interest and sadly probably cost effectiveness and success rate come into play - they have to weigh up risks versus potential benefits. There are so few donor livers available and they do have to decide who would benefit most from the organ - someone who perhaps will benefit for a few months more until seeded cancers take their toll or someone who can benefit from possibly many years more.

All along with your loved ones care it seems like they have tried various treatment options but transplant has never been possible due to the number, size and location of the tumours. I would have thought they would still be taking a roll in monitoring the patient but I guess when sadly it does become the terminal diagnosis stage all they can offer is the palliative care type element of care. The BLT page has a new page about end of life care and planning for the future. britishlivertrust.org.uk/in...

So sorry that you are at this stage with your loved one but from your first posts 3+ years ago it seemed like this would always be the case.

Thoughts with you both and the family.

Katie

[eekk in reply to AyrshireK]

Hello, there was only 2 tumours one just over 3cm one just over 4.5 I have heard of lots of others getting transplants at that size and he had no complications or doctors visits so was managing fine.Must be people in different countries that get better options and can have transplants.We would pay if we knew where to go

[AyrshireK in reply to eekk]

The UK protocol stipulates :-

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.

Sadly having two tumours - one of which is over the 3cm stipulation would be grounds for refusal to transplant.

It also very much depends on where the tumour is situation within the liver - if it is near the surface or near one of the vessels which need to be cut during surgery it would be highly likely to spread from that point.

The NHS is the only route to transplant in the UK (although there is some 'shady' dealing goes on at some of the London hospitals where it is suggested they transplant privately but only after all UK clinics have refused the donation or can't use it ........... this was published widely some years ago and discussed on here re. foreign patients coming to UK).

The problem with going abroad for private treatment is who in the UK is going to follow up a privately obtained transplant? Who is going to pay for the meds etc. going forward? Or the cancer treatment that may spring from having an inappropriate transplant which seeds tumour cells.

I totally accept we would do anything for our loved ones but the protocols are there for the safety of the patient and to make best use of finite resources.

Katie x

[eekk in reply to AyrshireK]

Who cares about costs i would rather find the money than they be dead

[eekk in reply to eekk]

UK leaving lots of people for dead and to die anyway so no wonder people are looking at alternative options and countries.Lots of people have had transplants overseas at same stage and situation as my fam member and survived many more years.UK just leaves you to die -stick you on morphine until dead

[alfredthegreat in reply to eekk]

Hi eekk . My tumours were 4cm and 2 cm and then shrunk and held stable after TACE One tumour was very close to the portal vein. At the time of diagnosis I was told that I was not eligible for a transplant. After joining this forum I noticed that people with more tumours than me and greater complications had actually been put on the transplant list. As you know I eventually got a transplant 4 years after the HCC diagnosis, but I was told in those 4 years that transplant was not an option. I think to pay privately for a liver transplant would cost a small fortune. I don't know how much in Great Britain but I have seen amounts online quoted in America from $5,000-$10,000 . Is the hospital your relative goes to a transplant hospital? Best wishes. Alf

[alfredthegreat in reply to alfredthegreat]

sorry that was meant to read $500,000- $1,000,000

[ThreeSmiles in reply to alfredthegreat]

Hi Freddy

I was told when I was recovering in QEHB it had - or would when all the aftercare has been included - have cost the NHS £350k.

Not sure whether that was to make me feel better or what 😁

Milo

[eekk in reply to alfredthegreat]

So myfam members was only couple of mm bigger i feel its unfair.Lots of people get hope of transplant we get nothing

[alfredthegreat in reply to eekk]

In my case. I was simply told that I had no hope of a transplant because I had multiple tumours (which turned out to be 2) and I had a Child Pugh score B, it was only just into a B, a fraction off an A. Your family members largest tumour is only half a centimetre bigger than my largest was. I would certainly ask for another opinion. Wishing you and your family member all the very best. Alf

[Grank]

I’m surprised at the lack of follow up after a diagnosis for HCC and TACE.

I had a surgical resection for HCC at Queen Elizabeth Hospital Birmingham, but unfortunately they didn’t get clear margins with malignant cells seen microscopically on pathology.

I was told by the hospital, after being given my pathology results, that I would be offered palliative care only, and with six monthly check ups. I do know that my GP and private consultant intervened on my behalf and requested further discussion at

Medical Team Meetings (MDT).

Queen Elizabeth Hospital now follows me closely with imaging and three monthly clinical appointments. My GP has requested these appointments, therefore I don’t know whether this is standard care. The strategy now is to ‘watch and wait’ to check for recurrence, and when progression is found, to discuss at (MDT) whether treatment is an option.

You should at the very least have a palliative care nurse to discuss your ongoing concerns.

I’m very sorry for the situation you find yourself in.

Regards Grank

[eekk in reply to Grank]

I was shocked myself.When pain started becoming an issue I googled the contact info for local nursing offices and got a palliative care nurse in place.

She suggested the pain relief.Other than that I do full time care and that is it really just pain relief.

[Grank in reply to eekk]

It appears that you have been on a long journey. To survive three years, and not in good health, takes courage. I really hope you are getting the support you need. In my thoughts.

[2zebras5]

Hey, that’s a horrible situation. Many Asian countries offer treatments, I think you can research online what are the better hospitals for transplants and call them, generally you would need to have a family member who is willing to be a living donor and if that’s the case it can happen very fast... Otherwise there might be more options within the EU, I would always check this first.