Mesothelioma (Asbestotosis)

alima I am so sorry to hear of your news.

The only person I know is someone who has some sort of pre-asbestosis.It has been found in his lung, but not yet full blown cancer.

I wish your DH all the luck in the world.

Thank you so much whitewave, you have given me hope. Had no idea there was such a thing as pre-asbestosis. Maybe, just maybe.............

So sorry about this worry for you both, but it sounds good that they have caught it early. What do you think the source of the asbestos was? I hope that the results of next week's tests are helpful.

We think it stems from his time in the Navy. He has never worked with asbestos but apparently it can be caused by proximity to say the overalls worn by people who did, like for example stokers. As well as the Navy he spent the rest of his working life in a MoD establishment which was built with loads of asbestos. I would like to get questions together for when we see the doctors. whitewave mentioned pre-asbestosis which we had not heard of, we will ask about that. Apart from the booklets they gave him we know very little about this.

My brother-in-law has plaques in his lungs caused by asbestos. He worked on erecting nuclear energy sites in the 1960s and the medics think that is the cause. He is quite closely monitored by the hospital - in fact he has gone for one of a series of breathing function tests this morning. He is part of a large group of claimants all being included under one action by a firm of solicitors but I do not know what stage that is at. It seems to have been ongoing for a considerable time though.

The problem is that asbestos was widely used in many buildings and is still in situ. It can only be removed by licensed operatives and has to be disposed of very carefully.

When I worked for social services, some of the SWs were in a "terrapin" - at some point when some work was done, asbestos was discovered and the SWs were told not to put drawing pins in the walls (!) - scroll on about 20 odd years and 4 of the 8 workers have cancer of one sort or another. Coincidence? - who knows?

I am glad that I was in the main building.

My father worked in a shipyard and was diagnosed with cancer which they thought may have been related to working with asbestos. When he died, they asked for a post mortem which we agreed to but when I went to the inquest I was told that although his lungs had asbestos fibres in situ the cancer was not caused by the asbestos. I spent a lot of time filling in forms because the consultant said that it was probably asbestosis.

There is a lot of misunderstanding and many use the term asbestosis as a general name for asbestos related conditions.
It is however a specific respiratory condition and quite separate and different to the disease called mesothelioma.

Alima I am so sorry that you and your DH have received this news. My experience is from when I was a Ward Sister on a chest ward and most of the patients we saw with mesothelioma had in fact been in the navy apart from one lady who took her fathers sandwiches to work for him at the factory where he worked and sat and shared them with him every day.

What I would say is that all treatments have improved, medical knowledge has advanced enormously and research goes on so be hopeful if you can.

I think if it may be an idea to contact SSAFA who may be able to help out with information re pensions, compensation and benefits generally. Getting financial support is extremely important to help you deal with hospital trips, taxis, train fares , parking etc and getting this part sorted does take one worry away.

I hope there is some good news soon and that your DH is soon receiving some effective treatment. Do let us know how things are going on and come on here whenever you want to talk about it. Best wishes

So sorry to hear that Alima and hope you get all the support and help you need.

My cousin's husband, 90 this year- has also just been diagnosed and is on 24/7 oxygen- although he was always so very fit. He was a mechanic/engineer and a Indianapolis driver all his life, working with racing cars- which in those days had gaskets, clutches, brakes and even bodywork that contained asbestos.

Alima so sorry to hear about this. Have pmd you.

Thank you for your kind posts. We have just got home from the hospital where DH had a scan. There is another lung test this week then we should be seeing the oncologist next week to find out more. It is our ignorance about this disease and fearing the worst (me) that is hard at the moment. We cannot fault the NHS in their care, they have been marvellous.

www.gov.uk/diffuse-mesothelioma this link may be helpful.

Best wishes.

This disease has a specific cause, exposure to asbestos but it is important to get some specialist advice before you complete any forms for benefits or apply online for government compensation.

You cant apply until you have a diagnosis and management plan anyway.

Sorry the message went off before I had finished. The specialist consultant in my experience has to provide a full assessment and medical notes as part of the application and although early application is encouraged the consultant and his team will be able to advice on the right time and right way to do this. My previous advice about support from services organisation stands however- they are usually very supportive in a number of ways. Vital though to get the clinical groundwork done first and to get your DH settled. I hope things are progressing at the right pace for you both and I am so glad to hear that you are being well cared for.

The consultant or lung cancer nurse at the hospital will complete a DWP form BI100PNA as proof of diagnosis and this form can be used to apply for benefits.

Thank you for the link Teatime.

AJHJA I would prefer it if you stopped commenting on this post.
Frankly compensation is the last thing on our minds at present. At the moment we are waiting to see what the doctors have to say.

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