Help please - mum has stage 4 lung cancer. There are things I want to know that my mum doesn't. How can I go about this without her overhearing/finding out?

My mums been diagnosed with stage 4 lung cancer and more recently we were told she has cancer in her spine unsure if it’s metastatic or primary. I also have questions about timeline and further treatment after what she’s on disagrees more or stops working and what it all looks like. I’ve been waiting for mum to have an appointment for a while and now it’s on Monday but a phone call Im unsure I can get time off so late notice and don’t think my mum wants to do it this stuff over the phone and it means that I’m with my mum to use her phone but need get far enough away she’s not at risk of overhearing since she doesn’t want to know any of the information I would like to know and don’t want to wait the oncologists time. I have asked my mum to ask her oncologist what they are able to do whole being very aware how precious their time is!

Any advice or alternative ideas very welcome PLEASE!!!

  • Heya.

    Welcome to the forums in order to begin with. It is always a good idea to talk about your emotions. Call the helpline on 0808 800 4040 to find a nurse who can listen to your concerns. You can do this. Keep us updated too. Best wishes. Ask the team what her biopsy results were. Request a appointment to talk about treatment going forward as well  

    MacMillan have a number of information booklets that are useful. Take a look on their website to find some that are for your personal situation in question here. I hope this is useful. And a typed list of things to ask about is also a good idea. Here are two examples of things that are important to know about, tumour details and team contact information. Find out if there are any research trials or not. Other things to consider include length of treatment and medicine information. Breathe in and out  

    You may also want to know about surgeries and so on. Let us know if you have any other questions. We are all here for you. Distraction helps a lot. When I had rest days I did puzzles at home. I also read story books. I tried arts and crafts. Find a hobby that works well for you. On my chemo days I talked to lots of other people who were also undergoing treatment. There may be a trained counsellor who works at the hospital in addition. I’d start there. Reassurance is key. 

  • Hi piglet

    Your mum must must be under a lot of pressure with her diagnosis. You understandibly want to help your mum by having as much information as possible whilst your mum would rather not know certain details. Usually the consultant will only talk to the patient on the phone so you will not be able to ask questions that only you will have the answers to. Patient confidentiality. Respect your mums wishes to not being told of certain aspects of her condition which could be unhelpful to her mental wellbeing. Wishing you both the strength to get through this together.

    Ed

  • Hello and thank you for posting. I am so sorry to hear about mum, this must be a very difficult time for you both.

    Unfortunately we cannot give you an idea of what treatments may be suitable for your mum, or what her prognosis might be, as we are not part of her hospital team.

    If you are unable to make the call maybe ask if you can rearrange, explaining it is important you are with mum when she has calls.

    If you are able to make the call then you could speak to mum before hand and explain that you have some things you want to ask or discuss with her doctor. She can then give consent for the doctor to share health information with you and she has the option of leaving the conversation. This is fine and will not be the first time that they have had this request.

    It maybe that they are unable to further treat the cancer, but are thinking about how to treat the symptoms that she gets from the cancer.

    We have some information on our website about metastatic lung cancer and the treatments for metastatic lung if helpful to read through.

    Prognosis is hard, as this is so individual, the doctor might give you some sort of time frame, like months to short years for example.

    Over the next few days sit down and write down some questions, with or without mum, that you feel you would like an answered on the call. You will not be wasting the oncologists time, these are your questions about your mum.

    Take care and if you want to talk things through with the nurses then call 0808 800 4040. Lines are open mon-fri 9-5.

    Sarah.