Mesothelioma

[Brian63]

Hi all, well here I post. 

2 weeks ago I was diagnosed with Mesothelioma. According to my doctors it is a non curable non treatable disease. I have been given 18 months. Tough call, but no good complaining. I’m a 63 year old builder who only did as I was told as an apprentice, asbestos is a mean oponent. I’m not blaming anyone, s__t happens. I have a great life, beautiful wife beautiful kids, beautiful friends and family. I have had and am determined to have a great life. It will probably catch up to me eventually, but I’ll try and keep a step ahead of it. I know I can get radical surgery done with chemo, but I don’t want my final years spent in hospital and going through debilitating recovery.
I am about to commit to radio therapy soon, which I am comfortable with. However it has been suggested that I get a talc pleurodesis done to the lining of my lungs to prevent fluid build up from the tumor. I have been told mesothelioma tumours get aggravated by surgery. Has any one had this done and could you confide in me your opinions please. 

[LindaG]

Hi Brian63, so sorry about your diagnosis. I have had cancer but not mesothelioma. It’s always such a shock when you go from healthy to a diagnosis of cancer. Sounds like you have a wonderful family and they all must be so upset for you. I don’t have any advice on your treatment, just wanted to say you are in my thoughts and prayers. Hope you can get some advice from other mesothelioma sufferers. 🙏💕 LindaG 

[Brian63]

Hi Linda thank you for taking the time to reply, yep my family and friends are just beautiful in their responses. saying it’s a day to day process is understating the agony of waiting. 

[Michele63]

Hello

My late father had mesothelioma and passed away back in 2004. 

He had the talc treatment you mentioned but there were a few complications and he ended up having the talc removed. Please bear in mind, however, that this was in 2004 - so early days for this type of treatment - and things have no doubt improved since then. I don't remember Dad having fluid removed but that could have happened without me knowing about it.

Back in 2004 there were fewer treatment options and PET scan monitoring was just starting.  Dad was also  involved in the Vitamin A research which had been running a few years - not sure if it is still running though I think it is unlikely after all this time.

It sounds like you are very forward thinking and have considered a lot of the different options available to you. If you haven't already please talk to your family to let them know what your decisions and wants are  so they can support you in the way you want and need. Also talking to you doctor and pre-planning for possibilities like the need for increased painkillers and the possibility of in home care (like help with showering) may save some time and stress later on.  If you haven't already had an Aged Care Assessment Team visit it may be worth doing so - this will help with getting access to different services including things like Disabled Parking vouchers, in home services and any equipment you may need - e.g. wheelchair, personal alarm (pendant if you have a fall and are the only one home).  Your wife may want to register with Carers WA for some independent support and resources if she needs it.

Best wishes to you and yours.