Looking for advice on early signs of asbestos damage

FormerMember
FormerMember
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Hi, I am new to this board and do not have mesothelioma or any other diagnosis relating to asbestos. I have read through other topics on this forum and can see that my post is not typical, I hope that by posting this I am not offending anyone. I would really like to hear from anyone with mesothelioma what their initial symptoms were, and if their condition immediately showed up on scans. I'd be especially interested in hearing from those who had asbestosis or similar diagnoses prior to developing mesothelioma.

I am a male of around 30. Three months ago I was fit and healthy: active job, 20 minute 5k runs, played sports, 80 mile bike rides, non smoker. Never had any respiratory issues besides pneumonia as a toddler, and fortunate not to have any other health issues.

At the beginning of May I had a dangerous encounter with asbestos cement sheeting buried beneath an old concrete shed base with some other metal and rubble. I didn't realise what it was at the time and spent around two hours digging it all up, breaking the sheeting in to many, many pieces as it was stuck between the concrete and other rubble. I did this without a mask in a dusty environment and was moving around the dust, dirt and rubble with a shovel.

After I realised what I'd dealt with my blood ran cold. At the time I thought I'd probably be OK nonetheless, or at least wouldn't know until decades later.

Around ten days later I experienced a viral-type illness with cold, sore throat and mucus cough. After this cleared up (the cough taking a while longer than other symptoms) I haven't felt right. My breathing is different, I feel short of breath and as if air is grating over my throat / through my lungs ... hard to describe. Low key constant sore throat, mild tightness in chest and some intermittent dull chest pains. The cough improved but any time I exert myself it is worse, same with the sore throat. Most alarmingly fatigue has progressed from feeling nearly as energertic as normal through the whole of May (albeit grotty from the symptoms), to becoming very profound whereby short moderate exertions now leave me feeling dead tired. The fatigue seems to have increased particularly in the past 3 weeks, and I have now taken time off work as I cannot keep up.

I realise that it is almost unheard of for asbestos exposure to effect someone with no latency period, but my body has changed drastically in the past 3 months since this exposure happened. I am sick with worry.

I had a chest X ray two weeks ago that showed no cause for concern, and bloodwork done which also suggested everything was fine. Not anaemic, oxygen saturation 98% at rest. The NHS care has been great but I worry that I have no further avenue to explore my issues as understandably it seems that I am totally fine.

But my body does not feel like it always has. Movement which wouldn't even register as exercise previously now leaves me tired. My breathing and chest do not feel right nor does coughing in relation to any. Some of my finger/thumbnails have raised/rounded a little which I believe may be early signs of clubbing. I feel like I'm going crazy and don't know what to do next. It is effecting my life as I cannot do the normal everyday things in my life let alone all the active things. My mental health has gone down the toilet.

I don't have any specific questions really, but I'm looking for advice from others. Did anyone have symptoms for a while but struggle to get a diagnosis as nothing showed up on scans? Is it common to have normal haemoglobin and oxygen saturation levels whilst living with an asbestos disease?

It probably sounds like I'm just cracking up and am worried over nothing, but I can't stress enough how much I broke up the asbestos sheeting and how profound the subsequent changes in my body have felt.

Sorry again if this is the wrong place to post this. I have searched for more appropriate forums to discuss asbestos concerns and it is thin on the ground - most sites are for compensation claims and legal enquiries. I can imagine how annoying it must be to have someone without mesothelioma using the board to worry and I am very sorry if my post causes any offence. I feel alone and desperate and would really appreciate any advice or shared experiences. 

  • Hi, in response to your question I was diagnosed with plural mesothelioma in December 23, and have been undergoing surgery and treatment.

     I am 78 years of age and at first I didn’t pay much attention to symptoms at the time, just put it down to getting older, I started to feel tired and breathless and had to sit down when out shopping with my wife.

    Wilst visiting my daughter I noticed a pain in my right side below my rib cage, it felt like having the stitch but still thought nothing of it, the discomfort got worse over the next few months until it got so bad I had to come in from attending my garden and rest.

     I was washing my hands in the bathroom and turned to get the towel from the towel rail when I had excruciating pain in my right side, so violent was the pain that I passed out, fortunately my wife was home and she called an ambulance and they took me to hospital where I had scans and tests and kept me in for a week having further tests, during my stay the doctors drained fluid from around my right lung and sent it away for testing and sent me home saying if the pain gets worse contact us.

    After 10 days the pain got a lot worse so I went back to hospital for a more tests, I was in hospital for a further two weeks when the doctor told me I had plural mesothelioma and it was terminal.

    In my case the cancer had taken 60 years to develop, I was working with asbestos at the age of 17 and knew nothing about the dangers of asbestos.

    As your test have come back negative I suspect you don’t have mesothelioma but I’m no expert although I have the disease.

    It takes longer than three months to develop and show itself.

    Hope this helps and would be glad to answer any questions you have.

  • Hi, 

    I am sorry about your diagnose. In what ways and for how long did you work with asbestos? Do you remember inhaling dust clouds of it?

  • I was repairing damage fuse boards and had to replace the asbestos pads used in them, and clean the boards, I was doing this on and off for 5-6 years.

     didn’t see any dust in the air but I could see it inside the fuse boards and on my work bench.

  • Ok I see. So your exposure was quite long-term as in years. I am hoping that I will not develop the disease, given my short term altough intensive exposure. But I believe something will get you anyway in life so it is not worth the worry.

    I hope you are not in too much pain and can still enjoy life for as long as possible. Take care.

  • I have Pleural Meso as I now call it and I have run out of treatments after 18 months from diagnosis due to immunotherapy attacking my liver, a side effect. So I am now moving towards palliative care.  

    Worked in a factory 1966-70 where they sometimes cut up asbestos. So thats approx 55 years it took since exposure. A particle has to imbed itself but takes years to cause the cancer as I understand it so from that point of view I doubt you have meso. You have breathed in a lot of dust and would be similar to breathing in clouds of mdf. I guess you have clogged yourself up a bit and hopefully this will clear up over time,maybe in 50 years you may of course find otherwise but hopefully not.

  • I am sorry for your dagnosis. It is not only the Meso I am worried. But rather the asbestosis that is another more common disease. It can actually cause illness much sooner and comes with heavy exposure. I am just hoping my exposure was not enough to cause it.

    Take care.

  • Hi again, I’m not in much pain at the moment, but while I was receiving treatment (immunotherapy) the side effects were quite unusual and very unpleasant, 

    After 12 rounds of treatment (out of proposed 18) I contracted neuropathy which effects your hands and feet with pins and needles and they go numb, with this I cannot feel anything in my fingers or feet and walking is not possible without a walking frame.

     I can’t pick anything up or use my hands to help around the house, although after three months the feeling has started to return but I can’t use my thumb and first finger on my left hand as I can’t bend them.

    Walking has also improved but still need the walking frame or I fall over as the nerves in my feet no longer send messages to my brain so I can balance myself.