Any one with any experience of liver melanoma please?

[gigglepin]

2 years ago mil had occular melanoma, had treatement and all clear.
Since early Dec, abdo pain, weight loss, sickness.
Been in hospital for 2 weeks, fianlly diagnosed with liver melanoma then sent home last night.
Referred to local specialist centre.

I know a bit, dont want to google, would rather speak to folk who have experience of this first.
thanks.

bump x

anyone?

No experience, and so sorry to hear your news - but do know there have been advances in chemo for secondary melanomas.

Wishing your mil the very best.

Hi gigglepin

I'm very sorry your MIL and family are going through this. I did see a a separate recent previous thread of yours and thought this might be the diagnosis. What would you like to know?

well, i kind of know that this is very bad.
I wanted some idea of how long she has and what will they offer in terms of treatement, given that the prognosis is hideous.
At what stage will they suggest things like symptom control and hospice care?

She was sent home with absolutely no information at all, just told that she will/has been reffered to specialist unit. Not when she should hear from them, ifthey will ring or write, no info at all.

Referrals are usually done in writing. Mil's doc most likely will dictate a letter, thsi will be typed (if the department is busy this will take a few days but no longer as she should clearly be at the top of the pile to be done) and then sent. The receiving doc must read it and accept mil then will write and/or phone. I suspect given the gravity of her case a phone contact is more than possible but I wouldn't count on it.

What can you do - keep on top of the referral process. First off you need to ring the hospital where she has been treated, as for the secretary of the doctor she's seen and ask if the referral has been sent. If you don't know the doctor's name ring the ward she was on and ask them. They WILL know or can find out, don't be fobbed off. Then you pursue the referral till you know it's in the post. Then you leave it a day or two and ring the specialist centre. Ask for the secretary of the new doc and make a relationship with them. You wonder if they can help you, you know they are busy BUT can they tell you what's happening, when will you hear, has the referral got there. Then you'll know exactly where you're up to.
Meanwhile you tell mil that you and dh will deal with this information stream and all she has to do is relax in to being at home again. When she is seen by the specialist centre you'll get more info about treatment.

Thats what i was going to do tbh but i was going to leave it till Wednesday, if she hasnt heard anything by then, im going to contact the sec of her consultant regarding her referral.
I am however reluctant to do this as i have had dealings wth this secretary in the past and she is less than helpful, rude and dismissive.
I am sweet as pie too, as i felt at the time that she may be able to help, as she had mils notes on her desk!
I asked her if the referal had progressed to the consultant, as we were anxious for any treatment to go ahead as soon as possible...she told me that "all the patients have cancer and that we would have to wait like every one else" talk about power trip.

I am very doubtful that anything can be done, i suspect that the cancer is advanced, as she has marked ascites now and her liver is palpable. She has weight loss, lethargy and no apitite. Abdomnal pain has lessened now, but not due to any medication or treatement.
I think that this whole referal process is a paper excersize and my main concern is that it does not delay any comfort measures and symptom control that she will needd soon.
She is only 61.
DS will be so upset, he loves his nana

Your other thread indicated you are a nurse so will attempt to be brief here.

Here are some sources of detailed information about metastatic melanoma in general (also known as advanced melanoma; and at this stage, treated the same whether originally from skin, eye or elsewhere).

Cancer Research UK website has good info including the more recently developed treatments. There are a number of on-going clinical trials for (metastatic) melanoma and it is possible that your MIL would be eligible.
cancerhelp.cancerresearchuk.org/type/melanoma/treatment/advanced-melanoma

Macmillan Cancer Support
www.macmillan.org.uk/Cancerinformation/Cancertypes/Melanoma/Advancedmelanoma/Aboutadvancedmelanoma.aspx

Wikipedia on melanoma (well-written review)
en.wikipedia.org/wiki/Melanoma

For your questions, here is a relevant paragraph from the Wikipedia page:
"When there is distant metastasis, the cancer is generally considered incurable. The five year survival rate is less than 10%.[27] The median survival is 6 to 12 months. Treatment is palliative, focusing on life-extension and quality of life. In some cases, patients may live many months or even years with metastatic melanoma (depending on the aggressiveness of the treatment). Metastases to skin and lungs have a better prognosis. Metastases to brain, bone and liver are associated with a worse prognosis."

The prognosis will be influenced by: the number and size of the tumour(s) in the liver (this would be shown on imaging e.g. abdominal CT scan); and her general health and liver function.

Treatment will aim to relieve her symptoms and support her general health. How is she feeling just now? Depending on her condition, she may also receive melanoma-specific treatment, for example chemotherapy or biological or immunological therapies, as described on the website links above.

Is this of help?

Gigglepin, sorry, Xposts despite the gap in time, because my post took so long to write!

Also, regarding referral...

I presume that originally MIL was under eye surgeons? And under either general surgeons or physicians or gastroenterologists on this recent admission? Has she ever been seen by an oncologist before this episode? If so, could she/you as family contact that previous oncologist again now?

When you say "im going to contact the sec of her consultant regarding her referral" do you mean of the consultant she has been under so far or of the consultant she's going to? (And what specialty does each have?)

Either way your deadline for action of next Wednesday sounds very sensible: it does unfortunately sound like the referral should be urgent.

Sorry you are all going through this.
:(

Thanks alcianblue that is all very helpful.
She is unwell presently. She has COPD on full treatement, i fear that the ascities is making her reduced lung function worse.
He ankles are swollen, i can only assume that portal hypertension / pulmonary hypertension are the cause of this.
I also assume that this is a secondary metastatic spread despite the original occular melenoma being 2 years ago....although this has not been directly communicated with her.

She underwent Radiotherapy at Clatterbridge. Due to her long term (17 years)use of methotrexate, liver function has always been in question, scans have always shown a very abnormal liver...that has always been the case.

She has had a CT, USS and most recently an MRI, so they have been very thorough. Up until Dec all of her LFT's have been "normal" for her.

This is happening very quickly.
As i say, my main concern is that all of this referral process will delay any symptom control and maybe they should be looking at referral to Hospice and palliative teams rather than waiting to be told by a surgical team in a city miles and miles away from her home, in weeks to come that there is nothing that they can offer her.
She would have to travel. She is not well enough to travel.
She was under the care of an oncologist, a professor i believe, so it may well be this chap who she has again been referred to.

Again, thanks so much for weedling out this info, i am not a fan of google, and i will go to the library at work for further info, but with such little information given by the hospital, i am making some wild assumptions based on what i see.
Its unfair and the system stinks.

Links are great btw, i will show them to DH so that he has a good idea of what is happening as its very difficult to explain to him.

I am very pessimisitic BUT as the family have only just been told that she has cancer, i am trying to say very little as they need to absorb that nugget first before moving on to "what comes next" iyswim.

Its difficult. I need to gauge the feelings and answer the questions when they come.
Unfortunatley DH's family are very much the sweep things under the carpet types who dont ask questions and who dont think too deeply about things. That is just their way. I am considered an outsider anyway and so dont need to get too involved....i draw the line at standing by and not encouraging things along to ensure her comfort though.

I didn't know you were a nurse. Does mil realise her condition is terminal? I don't think you're pessimistic but rather realistic. She needs the time she has to be as full and comfortable as it can be. She doesn't need to spend time on uncomfortable treatments of little benefit. Have you rung you local hospice yourself? Her GP could surely refer her. Perhaps that's a more profitable route to follow than waiting for the hospital.

The secretary's remark is apalling. I know some great medical secs and I know one or two bitches on power trips. Please do pass the comment on to her line manager. She either needs a good talking to or time away from a stressful job.

Hi, yes sorry northernlurker, 22 years now. But i have little experience of oncology and cancer care.

I will wait until Wednesday until i gently suggest persuing the way forward.

I dont think that she does know that this is terminal.
She thought that a melenoma was another word for a lump..like a "spot", had NO idea it meant a cancerous growth and no one medical told her!
I wish they would use proper terminology so that folk can understand and grasp the truth.

I would hope for an early referal to a paliative team of some description, i would hope that they explain to her clearly about the treatement options...i read about various trials and i am worried that she will be persuaded into something that may not benefit her. Doctors are Gods you see in their eyes.

I fear that this is probably end stage sadly.
Thought i might print out the info from Macmillan and give it to DH to give to FIL & MIL so that they can read about it..should they choose to of course.
Thanks again for all advice, it is very much appreciated.