TUMOUR HCC (cancer) No transplant. No treatment. I can’t accept this.

[Mare-M]

Hi everyone. Sorry I’m kind of posting about the same thing but I really need some help/advice.

Mum had her follow-up cat scan yesterday and her tumour has grown to 7 cm and there are possibly one or two more. Her doctor is adamant she is not eligible for transplant. Her doctor doesn’t want to do any treatment because she feels mums liver is too damaged.

Is anyone else experiencing this at the moment?

Apart from cirrhosis and ascites mum is in great health. No heart issues, no diabetes, no kidney problems, nothing.

The doctor wants me to start thinking about palliative care. None of this makes sense to me. I don’t understand how they can just give up.

I certainly can’t give up. I want to look at alternative, natural ways. Has anyone come across or even tried themselves having vitamin K injections and or vitamin C injections. I’ve read a lot about this helping and possibly even curing cancer, especially liver. At least prolonging life.

Thank you

Marianne

[Hidden]

This is a difficult post for me to respond to. With your mother's tumour being 7 cm and the possible existence of a couple more tumours a transplant isn't going to happen as her doctor has already confirmed.

This I believe is one of those occasions when the most helpful thing we can do when someone we love is in pain is to share the pain-to be there even though we have nothing to offer except our presence.

I'm sorry I can't offer you anything more than that.

[Mare-M in reply to Hidden]

I appreciate your reply

[Smyally]

Hi Marianne

Our Mums mean the world to us and we would do whatever it takes if we thought it would make things better. I have not been in this sad situation you find yourself in, but there may be someone on this forum who has and can advise you better than I can. I just want to say we are here for you. Thinking of you

Julia

[Mare-M in reply to Smyally]

Thank you Julia. I’m in shock to be honest. I’m just looking for someone who has /is going through the same who can hopefully she’s some light..

[carmik]

Hi so sorry to hear where u r at.

Unfortunately with a tumour of that size there is no eligibility for transplant.

Derek is right

Just look after her as best u can

X

[Mare-M in reply to carmik]

😔

[dizti]

Hiya,

I am so sorry to hear your sad news!!

I do not know anything about vitamin K and C to treat cancer but have heard of people using Turmeric and Cannabis oil also the alkaline diet but I am unsure as how effective they are and if they only work on certain cancers etc.

Whilst your mum is feeling in good health why not create as many happy memories together as you possibly can? Perhaps your mum has a bucket list?

Big hugs to you!! xxx

[Mare-M in reply to dizti]

Thank you for your reply. Im mum’s full time carer so I am with her every day From about 8 am to 7pm. I wouldn’t have it any other way. Of course Inwant to spend as time as possible with her.

Unfortunately she fractured a bone in her back a couple of months ago and is in quite a bit of pain and restricted movement so can’t do too much at the moment but hopefully that will heal soon enough..

Thank you for your well wishes

[Foxman555]

Hi, so sorry for the situation you and your mum are in, people with a lot more knowledge have told you the possible outcome, the only thing I know is that vitamin K is only given once, I only remember this just after baby arrived I was asked if they could give my daughter vitamin K, I really feel for you, you are doing the right thing in pestering them, I hope that they can come up with an answer for you.

Best wishes Jeff x

[Mare-M in reply to Foxman555]

Thank you kindly Jeff.

I can’t give up..

[Hidden]

Hi Marianne,

We are so sorry to read your news about your mum. It must be a very distressing time for you all.

Have you read our publication on liver cancer? We are due to update it very shortly but for now, here is the link to the current copy;

britishlivertrust.org.uk/wp...

With regards to your comments about Vitamin K and vitamin C injections, we would strongly suggest that you discuss the use of any medications or Complementary & Alternative Medicines with your mum's medical team in the first instance.

If you would like to have a chat about anything our helpline is open tomorrow 10am-14.45 on 0800 6527330

Warm wishes

Trust1

[Mare-M in reply to Hidden]

Thank you.

I will read it now.

Can you shed some light for me on this transplant “criteria”.

In the UK are there exceptions ?

Do you know what the possible cancer reoccurrence artistic is after transplant?

My mums doctor has pretty much said there’s nothing they can do and I’m free to try whatever I want. To be honest I really don’t feel like this doctor is been very helpful. The sad thing is she is a professor within the transplant unit so my hands are kind of tied..

[AyrshireK in reply to Mare-M]

The transplant criteria regarding HCC is this

Hepatocellular Carcinoma (HCC):

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:

- a single tumour ≤ 5cms diameter.

- up to 5 tumours all ≤ 3cms.

- 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).

Sadly you've said I think that your mums tumour is 7cm and has grown plus possible further tumours appearing too. The reason they can't transplant with such large tumours is there is a massive risk of seeding cancer cells into the circulatory system during the transplant op and these can then grow elsewhere around the body and sadly with the introduction of immune suppressant medication post transplant the body won't have any defences against the cancer plus there are issues with receiving chemo post op.

We have a member on here who is very recently transplanted and it was only after they looked at his old liver after removal that they discovered there was cancer present and some weeks after a wholy successful transplant they discovered he had cancers elsewhere in the body which had seeded from this unknown liver one.

It's a horrendous situation and I very much sympathise with you and your mum but sadly the HCC criteria are in place for a reason and they are not just writing mum off.

Best wishes, Katie

[Mare-M in reply to AyrshireK]

Hi Katie.

Thank you for taking the time to reply so thoroughly. I appreciate the information

[Hidden in reply to Mare-M]

Hi,

Thanks Katie for stating the criteria.

Are you in the UK? I think i read you may be in Australia? If you are, then we would suggest that you seek out the criteria for that country as we are not familiar with any policy that is not UK based.

Sending you warm wishes,

Trust1

[Mare-M in reply to Hidden]

Hi,

Yes I’m in Australia. My understanding is the criteria is the same in UK, USA & Australia..

[Mama41]

Sorry to hear this. Have you thought about going for a second opinion?

Maybe try and see a surgeon at one of the transplant centers. (My first tumour was 22cms) I don't want to give you false hope but it's at least worth a visit to the GP to see about getting your mum referred elsewhere. Xx

[Mare-M in reply to Mama41]

Hi Mama. Was your cancer due to Cirrhosis?

Sorry, please remind me , you’ve had a transplant and no cancer reoccurrence ?

I am going to get a second opinion however the problem is that the doctor who has made this decision is in the transplant team. We only have one hospital here in Sydney that perform the transplants.

I am researching hospitals in Europe/Germany who do transplants on non-citizens..

I am so frustrated. This doctor has just shut the door on hope. Not offering any treatments, no “we can try this or that”..

[Barnetaccounts]

Hi, Like everybody else my heart goes out to you. I too have HCC and am ineligible for a transplant now. I was on the list, got the call, went down to theatre and as they began the op I promptly had a massive haemorrhage. They pumped 25 pints of blood into me, got me up to ICU and informed my wife I probably wouldn’t make the night and would definitely never leave hospital alive. That all happened over 18 months ago and I am still here. I receive embolisations about 4 times a year to control any tumour growth. I don’t know how effective it is on a tumour that is 7 cm but it is certainly worth seeing a hepatologist at your nearest transplant centre and asking the question. It is not a cure but could potentially extend life. I have now had 10 of these procedures both before and after the aborted transplant. It effectively cuts off the blood supply to the tumour and either kills it or reduces it in size. It is a relatively painless procedure and you spend one day in hospital for observation afterwards. I have written a blog about my cancer journey and embolisations form a relatively big part in it as I believe that firstly they kept me on the list preventing any tumours from breaching the ‘criteria’.Secondly keeping me relatively well post aborted procedure and allowing me to live longer than was ever expected. I have mobility problems but that aside if you saw me you would never believe there was a diseased liver working away inside as best as it can. My blog can be found at

1liver1life.wordpress.com

I wish you and your mother well.

Ray

[Mare-M in reply to Barnetaccounts]

Hi Ray

Thank you so much for your reply.

That is unbelievable. What a difficult, scary time that must’ve been.

Can I ask is your HCC a result of cirrhosis?

Is embolisations RAF or TACE?

The doctor, actually professor who is part of the transplant assessment team is saying they’re not gonna bother trying to shrink the tumour because mums liver is quite damaged and they will kill off any healthy cells that are left.

Basically just telling me they won’t do anything. I find it hard to believe they’re just willingly not going to attempt anything and let my mum die!

Can I ask what size your tumour initially was and were there multiple tumours ?

Thanks

Marianne

[Barnetaccounts in reply to Mare-M]

Hi Marriane, Yes definitely Cirrhosis, I am a recovering Alcoholic (15 + Years Sober), but they told me the Cirrhosis was not Alcohol Related (I did laugh out loud) but the diagnosis was Nash. I have had numerous tumours and as I stated before none were very big and the embolisations were initially being used to ensure I was always within the criteria. After the aborted transplant I was told by the hepatologist that embolisation was now off the menu, and I would live as long as my liver would allow. I sacked her and now am under the Professor who actually carried out the procedure. I am lucky as I have insurance and see him about 5 times a year. Recently the embolisations have been dealing with blushes on my liver which are areas that have the potential to develop into tumours . I am acutely aware that every procedure effectively kills off a small area of my liver and as time moves on they will decide that enough is enough, but that is for another day and I will have to deal with it when that time arrives. As was suggested in an earlier reply, take advantage of every day, create wonderful memories, and never give up hope.

Ray

[Mare-M in reply to Barnetaccounts]

Hi Ray,

Thanks again for your reply.

I guess I’m just trying to work out what stage of cirrhosis you’re at in comparison to my mum. Trying to hold onto any hope as you would imagine.

Can I ask if you’ve reached level where you have ascites, Weight loss/muscle loss or any other symptoms ?

It sounds like your cirrhosis may have been discovered in early stage ?

[Barnetaccounts in reply to Mare-M]

I have lost all the muscle in my lower spinal area thus I now can only walk about 50 yards before my back seizes up. I have just bought a mobility scooter to enable me to be as normal as possible. I have only been drained once where one of my lungs had about 9 Litres of fluid after the attempted transplant. To control any fluid build up I take 2 water tablets, I have also been diagnosed with HE and take 2 tablets a day to control that and that’s it. I agree that it could have been caught at an early stage but I have no definitive proof of that.

[Mare-M in reply to Barnetaccounts]

Yes Mum is on water tablets and refaximin also (for HE)

Water tablets are not affective as they drop my mums sodium level too low so unfortunately she gets abdominal fluid drained very 2-3 weeks.

The losing muscle is interesting (I’m sorry I don’t mean it that way) just that they haven’t mentioned that as a possible cause of my mums ongoing back pain so I will look into that.

Are you on painkillers for the back pain?

[Barnetaccounts in reply to Mare-M]

No I have semi regular pain relief injections

[Mare-M in reply to Barnetaccounts]

Can I ask what that injection is ?

[Barnetaccounts in reply to Mare-M]

I think they are Cortizone and last time they also administered an epidural. I was in absolute agony prior and after about 10 days it was so much better. I am seeing my spinal specialist on Monday and will confirm afterwards exactly what was administered.

[Mare-M in reply to Barnetaccounts]

Ok thank you so much.

I definitely know what youre going through. My poor mum is in excruciating pain. She is on Endone which is not the best for the liver or in general..

Is your specialist an orthopaedic surgeon or rheumatologist ?

Regarding my mums pain theyve just said it’s because of her crush fracture in her back and left it at that. It’s now been three months and not getting better at all..

[Purplelamp]

Im so sorry to hear about your Mum. I know how you are feeling as I nursed my own mother in 2016. I dont want to offer false hope but just by chance I heard a lady talking about cancer and mangosteen today. I had never even heard of mangosteen but there just happened to be some growing on a tree on a tour I was on and she said it kills cancer cells, ive done a quick google and there are a few articles about it. Maybe worth a read?

[Mare-M in reply to Purplelamp]

Thank you so much. I will look into it now x