Mesothelioma

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

New to group.

Sunny1515
Posted by

Hi, I have just joined this group and would like to share my story and hopefully get a bit of advice.

My lovely Dad who is 73, began with what was thought to be Atrial Fibrillation at the beginning of March. He’s extremely fit and healthy, but having being exposed to asbestos for many years during his job,  we have known he has pleural plaques for around 3 years. 

He had a particularly bad bout of pneumonia which resulted in hospital admission for a few days at the beginning of April and despite appearing to have recovered, we have been told following a CT scan that it was ‘highly suspicious’ of Mesothelioma and he also has fluid round his heart. We have an appointment with the cardiothoracic surgery in two weeks. I don’t really know what I’m asking, but can I take ‘highly suspicious’ as meaning he’s most likely got it and they’re just doing a biopsy to prove it? How long does it usually take for the biopsy and subsequent results? Aside from a very slight hoarse voice of an evening, he seems fine! 

Thank you for reading, apologies for the lengthy post! X

hurtandconfused981
Posted by

Hi Sunny1515,

I have quite a similar story to you but my Dad's been going on since February through a similar type of admission. I've put our timeline in my profile and if you click in there you'll be able to see it. I'm trying to update it regularly.

The only way they can definitively confirm mesothelioma is through biopsy. Sometimes, I think, depending on symptoms and the frailty of the patient in question they can provide diagnosis without it but they tend not to do this.

The CT may have brought back some kind of "nodular" surfaces or like a diffuse (all the way around) type of uneven thickening of the pleura which is suggestive of mesothelioma. They can see plaques on there too. But the only way they can really tell for sure is via a procedure such as thoracoscopy and biopsy.

It depends on which type of procedure they do. They can do a number which I believe are CT guided ones, closed biopsies, thoracoscopies and VATS.

I'm guessing as there is fluid involved (is it also on his lung?) they may opt for a thoracoscopy. This way they can do a talc pleurodesis which will seal the lung and pleura together to try and stop the fluid build up again. They can also see the lung and pleura as it's a camera and take biopsies a lot easier too. From what I've heard they prefer to take large tissue samples because it can be a tricky disease to diagnose.

For my Dad thoracoscopy took about 30-45 minutes. Maybe even up to an hour. It's difficult to say because he was heavily sedated for it. They do it under local anaesthetic and heavy sedation so his sense of time is a bit off! Your Dad will have a short hospital stay afterwards to drain any remaining fluid off the lung and to make sure that everything is OK afterwards.

For the heart, I'm not sure what they do. I think they may just do a drainage?

In terms of time to results. I think these are variable depending on what area of the country you're in. We're in the Merseyside area. Dad had his thoracoscopy on a Thursday 28th March and the doctor got the results on the morning of the 15th April so just a little over two weeks. Unfortunately the old adage of "No news is good news!" isn't always the case with biopsies.

There was a second pathology test that occurred after this and the results didn't come back until much later. Maybe another 10 days. The story is in my profile as to what happened with that.

In the very least, I hope this helps. Keep strong. If your dad is fit and healthy they will treat this cancer as aggressively as they can. It isn't all doom and gloom and I know you probably feel rotten right now (God knows I did) but we are all in this together. Don't get bogged down in the survival rates!

Sunny1515
Posted by

Thank you so much for your reply. I have read so much about it all now and you’re right, it isn’t all doom and gloom. I just want to know now, good or bad, so we can get on with things and get a plan. I lost my mum a little over 9 years ago to lung cancer (a different sort) but this all feels very different, I feel like we were given more information from the offset- but I guess it wasn’t as hard to diagnose. 

I have read your profile, thank you, very informative- I hope your Dad continues to do ok? It’s strange and I don’t know if you feel the same, but everything suddenly feels very sentimental? 

Thanks again x

hurtandconfused981
Posted by

Hi Sunny1515,

A lot of the information out there will scare you witless about mesothelioma. Yes, it's aggressive and its been woefully underfunded and treated, but that is changing. Please try to bear in mind that in a lot of cases they catch mesothelioma very late and in already frail patients who can't tolerate treatments so they move quite quickly into palliative care. I think this tends to skew the survival rates a lot but I could be very wrong on that.

There is an excellent centre/hospital in Leicester that are doing a lot of work and trials around mesothelioma. There's one particular trial that I think looks very promising called MiST.

It's very hard to say but try to enjoy the calm before the storm and looking after yourself right now is key. Your life will start to get busier once things do start moving - there is also a legal aspect to this disease to consider which I'm sure you might already be aware of with your Dad having pleural plaques.

But I do understand, being in a similar position, that you just want to move forward on a pathway whatever that pathway is.

A great resource that you can start having a look at is:

https://www.mesothelioma.uk.com/

I also think survivor stories are fantastic so I'll link them here:

http://www.mesothelioma.uk.com/information-support/support/patient-family-experiences/

If you ever want to chat then feel free to message me separately