Mesothelioma

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

Looking for advice on early signs of asbestos damage

lifeonhold
Posted by

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. 

hurtandconfused981
Posted by

Hi Lifeonhold,

OK. Take a deep breath and chill.

I'll be blunt with this and say I think you've already answered your question with these sentences here:

"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 highly doubt you have any form of asbestos related disease. If you've only been around the stuff once then you're talking to people here who either have personally been around it or have relatives who have spent their entire working lives around the stuff. It's as you've already said, it just doesn't manifest that quickly. We're talking years. Not weeks. What I do think you have, and I mean it in the kindest possible way, is some kind of health anxiety. It's nothing to be ashamed of as I have death anxiety and I frequently see a therapist. If it's not this, have they maybe looked at something like glandular fever? It's just a thought.

By all means you are entitled to ask your doctor for a second opinion if this is going to ease your mind but I would also seriously consider discussing with your doctor the ins and outs of these illnesses, plus why your x-rays look normal (any form of asbestos related disease would show some considerable change on an x-ray.) and then discuss steps to move this forward. A second opinion may even help ease your mind over this. I'm not sure if they would sanction a CT scan in your case because it doesn't sound like you have a clinical presentation from your x-rays to warrant one.

I've suffered with my mental health all my life and I'll tell you this now... Yes, it'll manifest in physical ways - even ones as extreme as this. I can tell just by your post that you're frantic and obsessing over it. The more you think about it the more you'll "notice" changes in your body, some that might not even be there. It's a horrendous cycle which over time may only leave you feeling physically worse. The CBT model covers the reasons why and how to break the cycle.

I'm sorry if I come across as unsympathetic, crass or maybe even a bit patronising :( I really don't mean to be - I've been there, done that and got the t shirt and very happy to talk about it.. When your mental health takes a nose dive it has a profound impact on you... But if I were you I would really consider discussing the possibility of this being an option with your doctor. You shouldn't have to suffer :(.

roni2008
Posted by

I doubt that you have meso at this stage, who knows what the future will bring.  Perhaps some counselling might help,at least you'll be able to put it into context.  Mine was slow onset over about 30 years, same for my father.  May be different for others.

do you think you might have farmers lung???  Or some sort of allergy from the dust?

your post certainly doesn't offend me, best that everyone knows how bad asbestos is.

Thehighlander
Posted by

Hi , I don't normally post on this Forum but your post caught my eye.

First - never feel guilty or think you are offending folks when you are concerned about your health.

Second - the answers from the others are spot on and should give you a platform to move this forward.

I was diagnosed with a rare Lymphoma back in 1999 and had yearly CT scans and only in 2012 did one scan show a small issue and after investigation it turned out that I had Pleural Thickening and Pleural Plaque (Right Lung) - Asbestosis....... not Malignant Mesothelioma.

The only effect it has on me is a 15-20% reduction in my lung capacity.......and no other issues over all these 30-40 years.

But at the same time I do have Asthma and I an not a young lad so my Chest Consultant (who is a good family friend) puts it down to getting older. I am checked every year (but this is part of my post - Lymphoma treatments) and nothing has changed.

I worked in the Construction and Oil/Gas Service industry for many years and had multiple, long periods of exposure to Asbestos..... and that was over 30-40 years ago......so I see myself as one of the very lucky ones.

Your one exposure most likely will have no physical effect on you and even 'if' this will take many many years...... but as you have stated - the mental effect on you is hard to control.

You do need to sit with a health professional and talk this through, listen to them and put what they say into action.

Stress is mentally and physically debilitating. The issues you are experiencing most likely are stress related but as has been said, you may have other health issues that need to be checked out.

Go see your GP and find a way forward and in the best way I can put this "I do hope that you don't need to be using a cancer forum in the future"

For more information check out Clydeside Action on Asbestos as they are a charity working in this area.

All the best. 

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

lifeonhold
Posted by

Thank you very much for the kind and detailed replies. They have been really useful and I have not found them unsympathetic or harsh at all. You are all absolutely correct in pointing out that my mental health is effecting me greatly and likely altering my perception, I am not someone who has typically worried about my health previously but I do have anxious tendencies in life generally and am utterly obsessed with health anxiety now.

The NHS care was so kind and prompt and they did discuss addressing the aspect of my mental health when I was only partly satisfied by the clear X ray and bloodwork. I rejected the idea of antidepressants as I don't feel that would deal with my concerns, but it certainly would be good to discuss the situation in more depth. I feel like going back to the doctors at this moment would be wasting their time as logically there is no need to refer me for further tests or to a specialist consultant, but there is a huge part of me that thinks the only way I can move forwards is by investing further.

What I am finding the most difficult is to believe that the way I am feeling physically could be due only to anxiety and depression. I have never had a cough for more than a couple of weeks in my life, but I have had this cough for 2 1/2 months now; and it largely only shows up when I exert myself but doesn't feel like any normal kind of cough otherwise. It's really bad during and after intense short exertions, and somewhat bad during milder exertions like brisk walking. Chest tightness, sore throat and feeling of a constricted throat/breathing also worsen noticeably during exertion, and I often feel lightheaded or dizzy afterwards.

I have also seen some of my fingernails change from being flat a month ago to being slightly cambered now, with white bands of skin visible underneath these nails more prominently. And my tiredness is just crazy compared to my normal self. I am nowhere near bed bound, but I just get exhausted so quickly from so little exertion, I constantly need to sit down to recover from short walks or chores. Three months ago I was incredibly active and full of energy. Despite my anxiety levels being through the roof I feel lethargic and sleepy through a lot of the day and am sleeping well albeit waking up more than usual. I am eating well and have not lost weight, although have lost muscle mass and gained fat which is to be expected.

It's really hard for me to believe that this change is all from my mind. I can imagine how frustrating it will be reading this for those of you who have given excellent responses. I am just struggling.

It doesn't help that I have read up on how tricky it is to diagnose asbestos disease in its early stages (and even X ray success rates with developed cancers sounds quite hit and miss). I feel like I could have coped with the uncertainty of my exposure had my physical health not declined afterwards - but then I was already anxious about the exposure before I declined so it could be a chicken and egg situation.

Initially I felt I would be fine or at least fine for 30 years or however long, but now the little voice in my mind is telling me that because of how much I broke up the asbestos, and shovelled it around breathing heavily above it without a mask - that maybe I'm a stupid, unlucky sod who inhaled as much asbestos in that one day as some others would have in decades working with it. Sorry if I sound insane. It just worries me thinking that perhaps my exposure was unusually intense compared to being around crumbling asbestos for longer periods of time.

I haven't added very much here, but I wanted to write down the things I have been thinking as I have bottled a lot of my worries up. Thanks very much again for the kind responses and I will be accessing help to address my mental health.

Best wishes to all dealing with mesothelioma / asbestos illness or supporting family members with.

Andy

Thehighlander
Posted by

Hi Andy, I do think that your fixation with your one moment exposure to Asbestos is at the route of all this and you have mentally convinced yourself that you have ‘got it’ even although you logically say you most likely did not get the exposure that would put you at risk.

Even a PET or CT scan the day after that day would most likely not pick up a single indication.

Your fixation is taking your mind away from dealing with the main cause of all that is going on with you and you do need to follow through on this.

Its a long life to live thinking ‘what if?’

You do need to go see your GP and unpack your symptoms as they are the only people who can help you move this forward.

Can stress and worry develop the issues you are experiencing? I have meet many folks not with any cancer or even any other illness experience the medical issues you have and only working with medical professionals did they succeed in getting into a better place.

A healthy brain uses 20% of all your daily energy intake, add stress this goes up to 40% severe stress this goes up to 50-60% and fatigue becomes excessive:(   

I wish you all the best.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

lifeonhold
Posted by

Mike - Thanks again for your reply it is very much appreciated.

You are right, I am going to seek medical help for my mental state. I need to get back to work asap if I am able to and am definitely not in a financial position to be getting private therapy (or paying for CT scans for that matter!) so I will see what my GP suggests. I just hate the idea of being on antidepressants, I'm aware they work for some but the side-effects concern me and I feel like they wouldn't address the root cause. So I hope that I can get help with something talking based.

What's rocked me the most is the fatigue. Anxiety aches and pains I've had before. I have had a couple of lengthy bouts of anxiety in the past to do with work/relationship stress and my physical health felt less than stellar during those periods. I never felt fatigue like this however, even during one anxiety spell where I was only sleeping for 5 hours a night thanks to sleeping pills. Whilst I was tired during the daytime I was still able to function normally. That's why my current situation has rocked me so much. I've never had panic attacks (now or in the past) so when I'm mentioning my breathing feeling different it's not because of hyperventilation or anything like that. Hopefully I can calm down and symptoms will abate in time.

Thanks again for your sympathy and advice I'm very grateful. It's been cathartic having somewhere to air my worries and have kind people with experience responding.

All the best,

Andy

hurtandconfused981
Posted by

Hi Andy,

I take antidepressants. They really helped me with a lot of my anxieties and without them I think I would struggle to cope with everything that's happened the last few months. You're right that private therapy is costly but depending where you are located you may even be able to self-refer yourself to a talking therapy on the NHS. I know you can do that in my area. Just be prepared for a bit of a wait. I think it can be about 10-12 weeks before you see someone.

In terms of the side effects from antidepressants they are very short lived though they can be quite nasty in the beginning. I take Citalopram but I started on 10mg to ease the side effects going onto them as I'd been on 20mg from the start before and it was quite rough. Basically I felt like I had a foggy/airy head for a few weeks but you can feel it easing off day by day as you take them. They say they don't work immediately but honestly I've always felt a good uplift after a week until it settles into something more normal. They definitely help with sleep, anxiety and depression... Not only depression.

When I was at my lowest I couldn't get out of bed and I was sleeping 14 hours a day so fatigue is definitely a symptom. I've posted a few links below with advice about anxiety/depression and their symptoms. Hopefully this helps you with understanding about the more you worry the sicker you'll feel. Mind is also a good resource to get some help in general about things.

https://www.mind.org.uk/information-support/types-of-mental-health-problems/anxiety-and-panic-attacks/anxiety-symptoms/

https://www.mind.org.uk/information-support/types-of-mental-health-problems/depression/symptoms/

The best I can do to give an analogy is... Have you ever had back pain? Then when you focused on that pain it just wouldn't go away or it felt worse because you "noticed" it? Maybe that's just me! But could be that the case with your breathing maybe?

There are other things to consider with your breathing. Are you asthmatic? Are you allergic? The only way you're going to know this is having a good chat with your doctor. You're 100% doing the right thing.

Do keep in touch. I would love to hear from you in the future as no one should suffer and mental health is downplayed wildly even though it can destroy someone's ability to do anything.

lifeonhold
Posted by

Hi hurtandconfused, thank you for your reply. Hearing about your experience with anti-depressants is useful, it's not something I have ruled out. I will discuss accessing NHS talking therapy when I next see my GP, I am aware that wait lists for these services can be long but it's worth joining the queue and hopefully I can get some help.

Thanks for the links, I have had a read through the resources and can see that some of my symptoms overlap with common physical symptoms from anxiety. Even though I know that psychosomatic symptoms are real, I still find it difficult to come round to the idea that all of this is caused by my mind. Aches and pains and feeling washed out I can definitely believe as I've been so worried and tense, but it's the changes I've perceived in my body relating to how I breathe and how my chest feels during exercise that I am really struggling with.

It's been nearly 3 months since I first felt different now so I have gotten used to the changes to some degree, but I know without doubt that I haven't felt like my breathing has been normal since around 10 days after the asbestos exposure. I can pinpoint the change to when I came down with the cough/cold. It's only noticeable when breathing in deeply through my mouth, not through my nose, and if I am inactive I feel ok. It's as soon as I start exerting myself that I feel tight-chested and start dry coughing.

Several days ago I did a few minutes of really intense exercise and had really quite severe chest pains for nearly 10 minutes afterwards, and mild pains and excess coughing took nearly an hour to subside. Before this began I'm sure I would have just been breathing heavily for a minute or less to recover from that kind of exertion, and without coughing or noticeable chest pain. I am less fit than I have been as I have been inactive, but it just seems too stark a difference to me. Never had asthma or allergies prior to this. It makes me scared to push myself physically again but I need to if I'm to get my life back together.

Hopefully it's caused by my mind or a less sinister thing than asbestos. Thanks again for getting in touch and for the advice and resources, it means a lot.

Andy