Peritoneal mesothelioma

Hi,

Until last week I hadn't even heard of this and now I feel I'm in a living nightmare!

My husband who is only 55 has just been diagnosed with peritoneal mesothelioma.  He is so uncomfortable with his swollen stomach and finding it difficult to eat. 8 litres of fluid were drained off a few weeks ago and when they attempted again the Dr said there was very little there to drain.  His other distressing symptoms are terrible sweats which happen during the day as well as night. He is also struggling to sleep despite taking zopoclone.  He looks terrible and weight is dropping off him. He is angry because everything takes so long. He starts chemo in a weeks time.  I feel useless and don't know how to help him. 

I know this type is uncommon bug would be grateful for any advice. 

  • Hi and welcome to the online community

    Discovering that your husband has peritoneal mesothelioma must have been very distressing for you both and, although I didn't have this type of cancer, I do know how hard having a cancer diagnosis can be on the whole family.

    Feelings of anger and frustration are common in those of us who have been diagnosed for all sorts of reason. Your husband is probably scared about not only his diagnosis but how this might impact on his life with changes to his lifestyle along with going through treatment and dealing with side effects. Most people find that once they have a treatment plan they feel a lot more in control.

    Your husband should have been assigned a cancer nurse specialist (CNS), sometimes also known as a 'key worker'. Has he spoken to her recently about the symptoms he's experiencing as they may be able to prescribe/suggest things that will help?

    You also need to look after yourself and you might find joining the carers group helpful as it's a safe space to share your worries and emotions with others who have a loved one living with cancer. If you'd like to do this clicking on the link I've created will take you straight there where you can join and post in the same way as you did here.

    When you have a minute it would be great if you could pop something about your husband's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Take a look at my profile, some of it may help 

    good luck

  • I’ve got peritoneal mesothelioma was diagnosed 9 years ago I had most of my stomach lining removed I will never get the all clear but hasn’t changed or grown again I’ve been told it won’t now and I live a normal life still have to be scanned every 5 years for life. I am 55

  • Hi Jas50

    Reading you post just now gave me the most hope I’ve had in the last 4 weeks since I was diagnosed. 

    im 42 and have recently diagnosed with peritoneal mesothelioma. At first I was told it was ovarian cancer and I was in complete shock like so many other people have said on here. When they called me and told me they thought it was mesothelioma my world came collapsing down around me all over again but this time things felt even worse. Ive become obsessed with googling this horrid disease and I’m struggling to find any inspiration when reading about survival rates. My case was heard in Leicester and then discussed by the national MDT IN Basingstoke (I’m in Nottingham). I can’t take the constant waiting for more bad news. My case has now been passed back to Nottingham for chemotherapy so it looks like I’m not suitable for surgery like you have had. I have an appointments with oncologist on Monday and I’m so scared that they will just say it’s palliative chemotherapy and I won’t have long to live. I can’t look at my family including my two young sons without crying and feeling so guilty that I might not be around for them in the future. 

    I hope you don’t mind me having a rant but I would appreciate finding out more about your experience. Most people on the forum have the  pleural type. 

  • Hi

    I live a normal life work full time and you would never know I had cancer. I went to Basingstoke treat you like royalty.

  • I couldn’t have chemotherapy for mine 

  • I think surgery offers the best chances but I’m now sure why they aren’t offering me that. 

    im so glad to hear that you’ve done so well. Thank you for replying 

  • Hi, does anyone know what the criteria is for being offered surgery? My friend has just been diagnosed and we are still waiting for the MDT meeting. Having read lots of info I'm still not sure why some are offered surgery and others not. Any ideas??

  • It is a huge operation so you have to be strong and as the disease grows around all your organs  There are many factors like how the Peritoneal is growing as Macmillan list -- 

    Surgery is only suitable for a small number of people with peritoneal mesothelioma. It depends on the stage of the mesothelioma and you need to be well enough to have the surgery.

    The operation will be done by a surgeon, who is experienced in the treating peritoneal mesothelioma. You will need to travel to a specialist centre for this surgery.

    The surgeon will remove most of your peritoneum (peritonectomy). They may also have to remove affected nearby organs. These may include the spleen, the gallbladder, and sometimes part of the bowel. You may also need to have the womb and ovaries removed. People who have a womb and ovaries include women, transgender (trans) men and people assigned female at birth.

    If you need part of the bowel removed, you may need to have a bag fitted on your tummy to collect your stools (poo). This is called a stoma. The stoma may be temporary or permanent, depending on the situation.