My journey with mesothelioma and what I am learning from it

Helen BakerMy name is Helen and I have mesothelioma – please don’t stop reading because this can affect every single one of us, and not enough is known about its symptoms, effects and prognosis.  Why not?  Is it because we can’t outlive it?  I wonder how many people are interested in those cancers that cannot be cured, only managed. 


I was just 64 when I was diagnosed


Unfortunately, I was diagnosed with mesothelioma in June 2022, aged 64. I have no idea where it was contracted.  As there is no cure I am just living my life for as long as I’m ‘allowed’, every day just wondering what will happen tomorrow and the day after.


What exactly is mesothelioma?


The earliest signs of mesothelioma are shortness of breath, chest pain and fatigue which may not appear until a later state in the cancer. Mesothelioma may not be curable, but it is treatable with chemotherapy, immunotherapy, or both. It is a type of cancer that develops in the lining that covers the outer surface of some of the body’s organs.  It’s usually linked to asbestos exposure and mainly affects the lining of the lungs (pleural mesothelioma), although it can also affect the lining of the stomach (peritoneal mesothelioma), heart or testicles. Aggressive treatment can lead to cancer remission in some cases. 


How old do you have to be to get mesothelioma?


Most cases are usually diagnosed in people aged 75 years and over, and men are affected more commonly than women. However, there are still those of us who are younger, and I am by no means the youngest.


What is the life expectancy of a person with mesothelioma?


A delayed diagnosis can contribute to a poor mesothelioma prognosis. This suggests that one’s chances of survival could improve with an early diagnosis. 


The average life expectancy after a diagnosis is 18-31 months, with treatment.  A very small number of patients have been survivors for ten years or longer.  Factors such as the type of mesothelioma, its stage when diagnosed and patient health can impact on life expectancy.  Treatment may also help improve survival for some.


How many people are diagnosed each year, and how many of those get the help they need?


There were 2,544 mesothelioma deaths in Great Britain in 2020. That was a rise of 6% compared with 2019. But it was similar to the average of 2,523 deaths per year over the previous 8 years. (2,085 male, 459 female)


Figures for 2020 may have been affected to some extent by the coronavirus pandemic.  A small number of individuals with mesothelioma may not have died in 2020 had they not developed COVID-19. But conversely, delays in issuing death certificates could mean that a small number of additional deaths will be identified in the future which took place in 2020.


According to the Health and Safety Executive there were 1,910 new cases of mesothelioma that were assessed for Industrial Injuries Disablement Benefit (IIDB) in 2020, of which 280 were female. This compares with 2,025 new cases in 2019, of which 240 were female.


Where does exposure to asbestos take place?


Unfortunately, you don’t necessarily know when, or where you could have been exposed to asbestos because you don’t have to be directly involved with the material.  Mesothelioma can take 20 to 60 years, or even more to develop after asbestos exposure. And most people will get away without actually developing it.


There is also something called ‘secondary exposure’, which is when one person transfers asbestos fibres to someone else.  Generally, that person works with asbestos, so they could have fibres on their bodies or clothing.  These are then transferred to family members by general contact and when washing the person’s clothes.  This type of asbestos exposure tends to have a longer development period than direct exposure.


What does the future hold?


The number of deaths is expected to drop in the future in line with the ban on the use of asbestos in new buildings, which was introduced in 1999. But although asbestos products are no longer used to manufacture or build things in the UK, it is still found in many schools, hospitals, offices, factories, homes, and other buildings. So there will still be deaths attributable to asbestos.  Asbestos Support Central England (ASCE) is working alongside other support groups across the UK, and the charity Mesothelioma UK, to campaign for asbestos to be safely from our building stock and the environment.


Raising awareness


It is good that ‘well known’ people help to raise the awareness of cancers, but it’s generally not until they themselves are diagnosed with a cancer.  The general public needs help to be made aware of mesothelioma. People need to know what signs and symptoms to look out for, and what happens after we are diagnosed. This could be achieved by higher profile publicity.


Particular cancers which are in the news, (in broadcasts, publications, posters, podcasts, etc.) are breast, liver, lung, leukaemia and childhood cancers. All of these are, in themselves, serious but are only known about because of the continual publicity.  In the main these are curable to some extent.  Isn’t it time for other less well known cancers to be spoken about so that people in general – and clinicians –  are more aware of them?


According to Cancer Research UK 1 in 212 UK males and 1 in 963 females will be diagnosed with mesothelioma in their lifetime.  94% of those cases in the UK would be preventable if people took the right precautions.


Who is there to support us if we have mesothelioma or are caring for someone who has it?


As patients, we are supported by Mesothelioma UK, which provides medical services such as expert nurses, and here in the West Midlands Region and Central England by Asbestos Support Central England (ASCE). ASCE provides welfare benefits’ advice and general support. ASCE is funded exclusively from grants and donations.


Websites that provide helpful information

Both of these last two raise funds exclusively for mesothelioma research, but they also hold awareness meetings as appropriate.




There is also an organisation called Cancer52, which Mesothelioma UK is proud to be a member of.  55% of UK cancer deaths are from rare and less common cancers.  Despite this, they remain severely under represented and under-funded across all areas, including policy, services and research.


Cancer52 is an alliance of 100 organisations working to address the inequality and to improve outcomes for patients with these highly challenging diseases.


I hope this post has offered you some food for thought. Thank you for taking the time to read this and hopefully learn more about mesothelioma. Maybe as a result you might be able to help us to have a better chance at longer survival.  In the end it is down to everyone to campaign for asbestos to be removed everywhere, completely. Remember, it can affect every single one of us – it’s the ‘the luck of the draw’!


October 2023