Radiotherapy questions

My Mum has been diagnosed with inoperable squamous cell carcinoma of the head and neck, specifically her tongue. 
We’ve been told it’s inoperable, with local lymph node involvement and small patches in her lung and on her spine

She’s having radiotherapy this week to try and shrink the primary tumour, but there’s no plan beyond that and no follow appointment until May. I’m confused, is this usual? 

The cancer has moved so fast, within 5 months she’s gone from having a sore mouth to being unable to eat or talk so it feels to me like there’s no time to waste! No one has suggested treating the node, chest or spine and given the delays in diagnosis I’m struggling to trust that she’s getting the treatment she deserves 

  • Hello, and thank you for posting.

    I am so sorry to hear about Mum and her tongue cancer. It is difficult for us to give you an exact answer to your question, as we are not part of Mum's teams. So, do ask these questions when you can. However, what I feel I can say is that, unfortunately, due to the stage of your mum's cancer, which you have described as advanced, stage 4c, the doctors will be limited in what they can offer.

    Radiotherapy to try and reduce her main tumour is helping to palliate the symptoms she has, and radiotherapy may be used in the future again at other sites to help control any symptoms. Once she has a treatment this week, they will allow her space to recover and allow it to continue working after the week has finished. When they see her in May, they will review to see if there is anything else they can do to palliate her further.

    Unfortunately, not all cancers respond to chemotherapy, and sometimes these types of treatments are just not suitable to give in every situation.

    I am so sorry I am not able to tell you anything more positive, but Mum sounds like she sadly has a very aggressive cancer. I hope that her team is referring her to the local palliative care team to provide support for her and to you all, and help keep her symptoms controlled.

    It may be good to try and talk to Mum's doctor or specialist nurse so that you feel you understand her situation better.

    Take care, and if you want to talk to the nurses on the helpline then do call 0808 800 4040. Lines are open mon-fri, 9-5. 

    Sarah.

  • Thank you Sarah.

    Unfortunately I leave more than 2 hours away, so I can’t be at appointments etc and my parents are not great at communicating what’s going on. 

    it’s good to understand a little more about where Mum seems to be and what the staff are trying to achieve. She has got a palliative team,  but only since Monday.