New and looking for support

Hi all. Last week my mum was diagnosed with plural mesothelioma after biopsies done during surgery to drain fluid from her right lung. According to the surgeon the 'parietal pleura, visceral pleura and diaphragmatic pleura were completely covered with nodules of obvious malignant appearance'. He stated this cancer is terminal, incurable and untreatable and gave a life expectancy of 4-18 months.

We are going to an appointment with an oncologist tomorrow and I want to be as prepared as possible with as many questions as possible. I have done basic research about meso but wanted to get your opinions on what I should ask.

Is anyone going through something similar? Are there any breakthroughs of new medications or surgical techniques?

For info she is 65, active and in perfect health (obviously discounting this big issue!)

Any help would be greatly appreciated

3 Replies

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  • All I can suggest is prayer and meditation with visualisation. I'm quite new to all of this myself with my mum.

  • Hi Callum89,

    How very sorry to hear about your mums recent diagnosis.This must be a very stressful time for you and your family.

    Treatment for malignant pleural mesothelioma is usually palliative and chemotherapy may be offered, although the limited research evidence suggests that many people are resistant to chemotherapy, and few people are candidates for surgery.

    You might want to ask what treatment options if any there are.

    Will any other tests be needed?

    Are clinical trials an option?

    There is ongoing research into targeted therapy and immunotherapy, ask if this is an option?

    Are there any dedicated centres with experienced teams where your mum could be referred to?

    You will also be referred to a cancer nurse specialist whom you can contact in between clinic visits, you will need her/his contact details

    I have attached a few links to some mesothelioma publications you may want to have a look at before your hospital visit

    erj.ersjournals.com/content...

    cancerresearchuk.org/about-...

    erj.ersjournals.com/content...

    Please don’t hesitate to contact our Nurse Helpline Freephone: 0800 358 7200 if you have any other questions to ask or if you just need to talk to someone.

    Kind regards

    All the team at Roy Castle Helpline

  • Thanks for the informative reply.

    Its a shame this Cancer is so aggressive and resilient; it has made for some pretty dark reading.

    We are currently looking for any trials in England and Wales, however, these all seem to be offered as a 3rd strike option (after two courses of Chemo).

    I am hoping that as my Mum is still relatively young that she will react positively to Chemo but even this will only give her 12-16 months.

    Its really hard to accept/get my head around, as she has been health her entire life and has never had anything wrong (which is lucky I guess).

    I think my Mum wants minimal treatment and the best quality of life she can get. However, this scares the hell out of me as it means it could take her faster.

    Not sure where I am going with this, just venting I guess. Thanks again for the help and just wanted to say that you have my up-most respect for the tough but good work that you are all doing.

    If anyone else has any questions for me (if they or anyone they know are going through this) then I will try to help where I can.

    Thanks again, I just wish it was better news (never thought I would yearn for plain old lung cancer before).

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