My mom was just diagnosed with stage 4 peritoneal cancer

Needless to say the entire family is in shock. There's no history of cancer in our family so there were no genetic tests done.  So we are all still trying to just absorb what we've been told and trying to figure out how to come to terms with it.

The doctors are being really vague about her chances of survival. I've tried to encourage her and even told her that there are many people who survive this and do alright but right now she's just overwhelmed.  While my brother and I can take care of her physical needs, we have no idea what to do about her emotional ones.  She's lost her hair, tons of weight, but of course from the abdomen down she's retained a lot of fluid.

Any ideas? I don't have any idea what she's going through and lately it seems she's just angry or irritated with all of use. I understand why but we just don't know how to react or what to do for her.... and the "chemo brain" is hitting which just makes things more difficult.

Help?

Comments

  • seatown
    seatown Member Posts: 261
    I can relate

    My sympathies to your mom & to your whole family.  I can relate--it was almost exactly a year ago that I was diagnosed with Stage IIIc or IV peritoneal cancer (the doctors still don't agree, & I've decided that it doesn't matter). It surely is a life-changing experience.  

    True, the hair loss, "chemo brain," possible depression & other byproducts of treatment are not easy to deal with.  I would encourage your mom & importantly, the rest of your family too, to seek out a support group.  Many other cancer patients have told me they find great comfort & help in support groups. Also, as time passes, your mother may be relatively lucky like me & find that she tolerates treatment quite well & overall has encouraging results.  I have been detailing my PPC experiences at http:/CaringBridge.org/visit/CaroleSeaton

    Finally, I would encourage your mom & your family to realize that every patient's path is different & there's no point in making assumptions based on the experiences of other patients or something you might read about overall prognoses, etc.  Good luck to you all, especially your mom.

  • abrub
    abrub Member Posts: 2,174 Member
    Do they know the origin of

    Do they know the origin of the peritoneal cancer?  Mine was secondary, from metastatic appendix cancer, and is treated quite differently (different chemo, etc.) from that of other origins.  The appendix/colorectal origin isn't routinely considered in a woman, and needs to be.

    By the way, I am 6 years out from my diagnosis, 5 years out from all treatments, and in full remission.

    Alice

  • JulieBelle
    JulieBelle Member Posts: 61
    Thinking of you

    So sorry you are facing this and being there for your Mum with loving support is so important even though she may be having feelings of anger (and so many other emotions!)  It is a roller coaster!   There are no books to tell us how to behave, what to think or say or feel for all of you.   And yes we all handle it differently so no right or wrong.   For me I wanted and continue to want life to go on as much as normal and not have to think or talk about it all the time!  Guess I can pretend it isn't there!  

    It is 18 months since my diagnosis of Stage 4 PPC and I am continuing treatment.   I have a good quality of life even though I can't always do what I used to.   Hopefully your Mum will soon realise that things like hair loss and chemo brain are totally unimportant in the scheme of things.

    Wishing her well with her treatment.   Loving each other and being there for each other, sharing laughter and tears will support both her and you and remember we are here for you.

    Julie x   

  • Millie2011
    Millie2011 Member Posts: 28
    Be there I guess

    Hi, sorry for you having to go through this with your mum. As I was in the same position as you I will just tell what I did and if that encourages you, I will be happy. My mum was staged primary peritoneal stage 4. She did not want to talk about it much but emotionally she loved me just laying by her side in the sofa, watching TV together or baking a cake, simple things in life but me to be there.

    Between treatments we travelled a lot. I can say now that those memories are the best to have close at heart. Talk about little things, big things or whatever she wants. So that nothing is unspoken or not said. We spent a lot of time talking about the future of me, my life, her grandchildren etc. Priceless and I thing mum felt comfort in talking about it. With her "chemobrain" I always followed her to the hospital because she kept forgetting what they told her and it was a good thing to be able to fill in blanks for her. Also do not be afraid to ask lot of questions to the treting team at hospital and do get a second opinion when in doubt.

    Also I agree with the other writings, that you can not predict how it will go. We got several good years and I am very thankful for that. Some on the board have survived long and if you can stand treatment well there is a good future.

    Hope all go well for you and your family and that you feel free to ask any question here on the board. I thought it was very comforting.

    Best of love,

    Sophie, Sweden

     

  • cannycaz
    cannycaz Member Posts: 5

    Thinking of you

    So sorry you are facing this and being there for your Mum with loving support is so important even though she may be having feelings of anger (and so many other emotions!)  It is a roller coaster!   There are no books to tell us how to behave, what to think or say or feel for all of you.   And yes we all handle it differently so no right or wrong.   For me I wanted and continue to want life to go on as much as normal and not have to think or talk about it all the time!  Guess I can pretend it isn't there!  

    It is 18 months since my diagnosis of Stage 4 PPC and I am continuing treatment.   I have a good quality of life even though I can't always do what I used to.   Hopefully your Mum will soon realise that things like hair loss and chemo brain are totally unimportant in the scheme of things.

    Wishing her well with her treatment.   Loving each other and being there for each other, sharing laughter and tears will support both her and you and remember we are here for you.

    Julie x   

    Hello,
    My mum has peretoneal

    Hello,

    My mum has peretoneal cancer, she has had chemo and the doctor has said the tumour has shrunk and the chemo has worked and to go back in 3 months. But she is far worse now and its only a few weeks later. She wont get ot of bed, cant eat as she feels full, has a very very swollen tummy and she wont let me call the doctor, I dont know what to do

  • cannycaz
    cannycaz Member Posts: 5

    Thinking of you

    So sorry you are facing this and being there for your Mum with loving support is so important even though she may be having feelings of anger (and so many other emotions!)  It is a roller coaster!   There are no books to tell us how to behave, what to think or say or feel for all of you.   And yes we all handle it differently so no right or wrong.   For me I wanted and continue to want life to go on as much as normal and not have to think or talk about it all the time!  Guess I can pretend it isn't there!  

    It is 18 months since my diagnosis of Stage 4 PPC and I am continuing treatment.   I have a good quality of life even though I can't always do what I used to.   Hopefully your Mum will soon realise that things like hair loss and chemo brain are totally unimportant in the scheme of things.

    Wishing her well with her treatment.   Loving each other and being there for each other, sharing laughter and tears will support both her and you and remember we are here for you.

    Julie x   

    Hello,
    My mum has peretoneal

    Hello,

    My mum has peretoneal cancer, she has had chemo and the doctor has said the tumour has shrunk and the chemo has worked and to go back in 3 months. But she is far worse now and its only a few weeks later. She wont get ot of bed, cant eat as she feels full, has a very very swollen tummy and she wont let me call the doctor, I dont know what to do

  • abrub
    abrub Member Posts: 2,174 Member
    cannycaz said:

    Hello,
    My mum has peretoneal

    Hello,

    My mum has peretoneal cancer, she has had chemo and the doctor has said the tumour has shrunk and the chemo has worked and to go back in 3 months. But she is far worse now and its only a few weeks later. She wont get ot of bed, cant eat as she feels full, has a very very swollen tummy and she wont let me call the doctor, I dont know what to do

    Call the dr!

    Your mum needs to be seen.  She can't wait 3 months.  Tell your mum that you love her, and therefore you are calling her dr, then do it.

  • anniegirl
    anniegirl Member Posts: 1
    seatown said:

    I can relate

    My sympathies to your mom & to your whole family.  I can relate--it was almost exactly a year ago that I was diagnosed with Stage IIIc or IV peritoneal cancer (the doctors still don't agree, & I've decided that it doesn't matter). It surely is a life-changing experience.  

    True, the hair loss, "chemo brain," possible depression & other byproducts of treatment are not easy to deal with.  I would encourage your mom & importantly, the rest of your family too, to seek out a support group.  Many other cancer patients have told me they find great comfort & help in support groups. Also, as time passes, your mother may be relatively lucky like me & find that she tolerates treatment quite well & overall has encouraging results.  I have been detailing my PPC experiences at http:/CaringBridge.org/visit/CaroleSeaton

    Finally, I would encourage your mom & your family to realize that every patient's path is different & there's no point in making assumptions based on the experiences of other patients or something you might read about overall prognoses, etc.  Good luck to you all, especially your mom.

    i agree

    I agree with Carole that you cannot base what may happen on others' experiences.  I hope your moms' reactions will get better as the treatments go on.  I had a tough time at first, but was also getting antibiotic infusions each day as well.  As those ended the treatments became more tolerable.

    I was diagnosed as stage 4 and am here 2 years out and feeling pretty good. 

    I did not seek out any groups, but have to admit I had a lot of family and friends with me and their support really made a difference.  I tried NOT to read anything on the internet as each persons' cancer is unique to them and you can make your self crazy trying to make sense of it all.

    BEst of luck to all of you...it is a difficult path....but with good doctors, humor, love and tolerance it makes it a little easier!!