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Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

Dads recent diagnosis

Life43211
Posted by

Hi, I'm new and just feel hopeless so thought I'd look for support from here. My dad was diagnosed with the cancer yesterday, he has had a drain in for a few weeks now and been hit and miss at draining any fluid out. I asked the consultant what stage it was at and he said a 'later' stage but another doctor would discuss our options. Just a waiting game to see this doctor now. He is only 60 and was previously in good health, the stress and worry has caused him to lose weight.

What I'm asking is, how long do people usually live with this? I've read stories of not long and also success stories of decades but in reality I just want to know an average, not that it makes it any easier. I'm just in shock and confused.

hurtandconfused981
Posted by

Hi Life43211,

This just popped up in my email alerts and I thought I would reply now sooner rather than later.

Unfortunately most mesothelioma cases are diagnosed later rather than sooner. If the doctor in question is not the oncologist, he may not be able to give an exact staging as it will go to a group of doctors/nurses/pathologists who discuss cases in more detail. They come up with a more accurate picture of staging from there.

Also, most unfortunately, as I'm sure you've already read... Most people do not survive for a long time with this... 18 months-24 months I think would be considered quite a long-ish time to some.. As you have noticed, there are some that have outlasted this prognosis. My Dad showed symptoms in September 2018 and was diagnosed in April last year. He's still going strong and they consider him to have 'stable disease' right now with reviews every so often in case he progresses.

On that note, cancer is a very individual disease to everyone. While mesothelioma is generally considered a highly aggressive cancer, everyone reacts differently to it. 

I have also spoken to some people who have lived for a couple of years with it. Chemotherapy is offered as first line treatment and some people do respond with it even if most do not (so don't give up hope). I've seen some people post on here that have survived 3 or even longer years. You could also look up Mavis Nye who has had mesothelioma for over ten years. As you have already noticed, it's rare, but absolutely it happens!

There are also a number of trials that your Dad can look into in terms of suitability. They are all listed on the mesothelioma UK website. I also recommend giving the number a ring so you can speak to one of the nurses there as they are immensely helpful. They will be able to answer any questions and give you some hope, reassurance and direction.

The most important part is to keep positive! If there are any other questions I can answer (or anyone else) please don't hesitate to ask. We're all a friendly bunch and going through very much the same thing as you.

Life43211
Posted by

Thank you. 

Great news about your dad! I hope mine has the same outcome but like you say, everyone is different. Can I ask what treatment your dad has had?

Once we see the next doctor we'll know what options we have and I'll mention the trials too. I'm just praying it's not too far gone.

Thanks again xxx

AprilTS
Posted by

My dad was diagnosed in September and died in January. He wasn't offered any treatment, just palliative care as he was 85 and getting frail. At least he stayed reasonably mobile and his pain was well controlled until December but he deteriorated very fast in his last month.

April

Happily retired animal lover
Life43211
Posted by

Oh I'm so sorry to hear that. I wish they could come up with a cure for it. It isn't very well known but sounds like one of the worse cancers out there :(

hurtandconfused981
Posted by

Not a worry!

My Dad has had talc pleurodesis and drainage done a few times but that is it.

They're not doing any further drainage as the fluid has been around a consistent half a litre in one side of the lung. Unfortunately part of his lung folded up on itself so he has breathing difficulty on top of everything else they found. Lately his breathing has been getting worse and his next scan is soon.

He's not had any chemo yet. They won't start any chemo until they absolutely have to.

My dad is 74, surprisingly fit considering, and that definitely works in the favour of the patient as it expands the option of potential treatments and trials. The oncologist will go through this with you.

Life43211
Posted by

So.....more recent news from today. 

They have given my dad 9 months to live without treatment or 12months with treatment. Offered Chemotherapy and o ly radiotherapy if hes in pain. I may be in denial but I've read other people stories that they have been offered other treatments too. I cant help but think the hospital are just signing him off.

Hes going to have both treatments and I suppose we'll see from there. 

hurtandconfused981
Posted by

Hi Life43211,

I expected that. Unfortunately that's the "gold standard" in the NHS at the moment because it's incurable. There are a number of things you can push but you have to push and it would be likely outside of your local area (or trials)

I recommend contacting mesothelioma UK for more help and information.

There are also a number of trials on their website.

https://www.mesothelioma.uk.com/

Trial list: http://www.mesothelioma.uk.com/?download=1416

Contact your local Asbestos support group (Mesothelioma UK may help with this.) They will assist with things such as benefits, claims and such.

Also seek legal counsel now rather than later (local asbestos charity may help with this). The process takes a while and sometimes a part of the deal the solicitor can strike with the insurance companies is paying for your Dad's immunotherapy.

Rose03
Posted by

Try not to get too stuck on the prognosis - my mum was given 12 months from the first doctor that diagnosed her - it was obvious early on that she was going to go further than that. A year on now, she has been a part of the Mars 2 trial - only chemo offered -she is now in a period of stability. We know that won’t continue for ever, but when it looks like progressing, we will look for the next path to take us to stable again.  Hope and pray we can all get as much time as we can - quality and time. 
Best Wishes 

bedouine
Posted by

Wish your Dad and your family all the best in these difficult times 

fatbouypne2
Posted by

Hello

Similar to my prognosis with peritoneal

mesothelioma 4 years ago, devastating for 

the Family and of course your Dad.

I was 60 then I’m now 65 and in remission how

old is your dad?

Life43211
Posted by

Hi Rose, that's great news about your mum, I've taken your advice and it is a lot easier to get through the days and be more positive now. He starts his chemo on monday so fingers crossed his body takes to it. Thankyou!xx

Life43211
Posted by

Thank you xx

Life43211
Posted by

That is wonderful news Fatbouypne2. My dad is 60, 61 in April. He has lost a lot of weight through illness and stress, I wish he could use a laptop properly and see your success story, I will show him your message. He has never been a relatively positive person lol but I really need him to see that this is not the end xx

fatbouypne2
Posted by

Hi

im new to this site, do you know how to private message 

me?