What to expect - stage IV with extensive mets

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Sdickerson
Sdickerson Member Posts: 3
edited August 2018 in Stage IV/Metastatic Breast Cancer ONLY

My mother has recently been diagnosed with stage IV breast cancer with mets to lungs, liver, bones, lymph nodes and we suspect brain. She still has to wait another 2 weeks to see an Oncologist so as yet we don’t know what to expect. I live on the other side of the world and obviously want to go and be with her but I can’t go indefinitely as I have two children in school and as a single Mum i cannot risk losing my job. I have to be very practical about things but my heart wants me to drop everything to go and be with her. I’m scared that if I wait until she’s seen the oncologist it could be too late. Can anyone offer any advice that could help me make a decision about when to go? Many thank

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited August 2018

    Its a shame you have to wait two weeks for her first appointment. Where does she live? I assume she's been diagnosed by a biopsy. Maybe they waiting for all her hormone receptor studies to get in. I wonder if you could talk to her surgeon and tell him about your situation.

    If she is ERPR+HER 2-, a standard first line treatment is Ibrance and letrozole, both pills. There are so many unknowns. I wish I had more to offer.

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  • Micmel
    Micmel Member Posts: 9,450
    edited August 2018

    totally agree with you talking to her doctor. First thing absolutely. Ask him the hard questions. Sometimes it can be kicked back a while with some chemotherapy , but if she is alone and depending on her age. Could need assistance. It’s a tangled web. Without. All the information. Like grannax. Mentioned. It’s difficult to say. However, the best course would be to get to have your name allowed on her privy forms so that you may call and ask questions. The more info you have, the better to make your choice. I’m so sorry for this happening to your family. But we do understand how hard it all is. I’ll keep you all in thought ~M~
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  • Sdickerson
    Sdickerson Member Posts: 3
    edited August 2018

    thank you for taking the time to respond. Unfortunately the time she has to wait to see the Oncologist is simply due to an overstretched medical system (she’s in the UK). It’s so frustrating for everyone, but more importantly for her, that she was diagnosed 2 weeks ago and yet is being left hanging in limbo. She is clearly extremely unwell and has made it clear she will not have chemo but has started both hormone and steroid treatments to help with some of the more advanced symptoms. I know I’m asking for a chrystal ball but I just want some idea of how long we’ve got, I don’t be want to have any regrets about not going soon enough. She has been unwell for quite some time but has refused to seek medical advice and it’s only now that symptoms have become so severe that she had no other choice. On some level I think we all new, including her, but it’s still a shock to learn how far it’s spread

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited August 2018

    Which doctor ordered the tests for her? Can you talk to him or to her primary care Dr? But, sometimes, many times no one knows how long. Sometimes, if she responds to something simple, she could have years. She is entitled to have a copy of all her tests and scans. Try to get a copy of those. They are not hard to read.

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited August 2018

    I had mets to liver, lung, lymph nodes in chest. And here I am 20 months out and doing well. How old is she? So you have not gone there yet. If she does not want treatment there may not be any way to get her to do it. Who convinced her to go get the tests? Maybe that person can get a copy of her reports etc. I'm sure it feels frustrating to be so far away.

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  • MuddlingThrough
    MuddlingThrough Member Posts: 726
    edited August 2018

    Sdickerson, as already mentioned, make sure she lists you on any privacy forms so you can have access to her information and so her doctors and their staff can talk with you. Also, if her cancer center has an online portal make sure you have the log-in and password. Getting that set up would involve knowing her account number or patient number or similar information.

    If you feel comfortable about it share her age, her general health otherwise, if she has other family members and friends close by. Also, what kind of in-hospital, temporary nursing facility (if needed), and what kind of home health support services are are available in UK? For example, she may need a hospital bed at home so she doesn't have to lie completely flat. I needed that due to lung problems but they got better over time. I also needed oxygen 24/7 for a while. Those kind of things.

    I was in very bad shape at diagnosis and it was over two weeks before my first treatment but I saw the oncologist and got a second opinion in between. I'm doing much better than I was at that time and I hope she will too. Once you know more about her treatment plan, you'll know more about when to go to her. In the meantime, encourage her not to dismiss any treatment right away, not even chemo, until she can ask more about it. I always said I'd never do chemo, but I did and it helped me tremendously, even though it wasn't easy.

    If she likes using a computer or tablet, encourage her to set up an account here. The Stage 4 topics here gave me hope and encouragement. Best wishes to you as you decide how to manage kids, job, and travel in the coming months as she gets started on a regimen.

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  • pajim
    pajim Member Posts: 2,785
    edited August 2018

    Sdickerson, if she has Estrogen Receptor positive cancer then hormonal treatment might knock the cancer back to nothing. You need to find out what kind of cancer so you can understand the treatments.

    I gather from your note that she doesn't want to do what she thinks of as "harsh chemotherapy" and I can understand that. However there are not easy treatments she can try. Hormonals, even Xeloda isn't too difficult. Herceptin (if she is HER2+) is pretty easy on it's own.

    I realize this all sounds scary but surely if the doctors who diagnosed her thought she was in danger she would have seen an oncologist in the hospital or they would have pushed this forward.

    Is she alone? If so, as for visiting, I would actually suggest you go with her to the doctor. You'll be able to understand what is going on, and help her decide the parameters. It will make both of you feel better. Then you can come home and wait to see if the medications work. After that you can go whenever you would normally do so.

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  • Sdickerson
    Sdickerson Member Posts: 3
    edited August 2018

    Thank you for your responses again. I have now learned that she has stopped taking the medicines (her choice and I have to respect that) and her symptoms are worse than I had previously been told. I’m now making arrangements to travel to be with her as soon as possible.

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  • MuddlingThrough
    MuddlingThrough Member Posts: 726
    edited August 2018

    Sdickerson, I hope you have safe travel. I'm sorry her symptoms are worse. Regardless of what treatment she has, or her choice to have no treatment, it's important that she can be made comfortable and her symptoms and pain managed.

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  • pajim
    pajim Member Posts: 2,785
    edited August 2018

    I'm sorry the situation is worse than you thought. Safe travels and peace be with both of you.

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