When treatment stops

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What happens when my treatment stops? My oncologist left, she had got plans for other treatment. My new Dr said treatment was stopping. I said what happens now, he said we watch & wait, when you get symptoms we'll treat the symptoms. I am confused & feel I don't know what's happening. What does watch & wait mean, is he just waiting for me to die. I know I'm terminal & I'm not going to be cured but nobody has mentioned dying. I'm not sleeping, just laying awake worrying. 

  • Dear Sue1,

    Thanks for getting in touch.

    I can see from your profile that you belong to our womb cancer forum, and that you’ve been talking to other members of the group. I hope you find it a good place to share experiences and get support.

    My name is Carole and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

    I’m sorry to read that you are confused, and that you feel as if you don’t know what’s happening, and that this is affecting your sleep.

    It can be difficult to get on with things when treatment stops or being told that it will start again when you get symptoms.

    Unfortunately, we can’t explain why your new doctor has recommended a different treatment plan, because we can’t access medical notes.

    Sometimes plans do change, and sometimes treatment isn’t given straight away.

    Your hospital team should be able to explain why they think this is best for you, and we’d recommend that you get in touch with them,

    There may have been an MDT (multi-disciplinary team) meeting – you could ask if there was, and whether this led to the change in treatment plan.

    If there wasn’t one, you could ask for this, or you could get a second opinion.

    It’s important to feel included in discussions and have an opportunity to ask questions so that you feel confident with what’s recommended.

    If you think it would help to talk to one of our nurses on the phone, please don’t hesitate to get in touch.

    It might be helpful to have a look at our information on anxiety and worry, and how this can affect sleep. We have tips which can help. And the charity Penny Brohn UK offers support both online, and through relaxation sessions, which are free to download or buy as a CD.

    Sending my best wishes,

    Carole

     

    You can speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email

    Ref: CF/HC

  • Hi Carole,  

    Thank you for your reply. 

    I was told treatment was stopped because my cancer had spread. He didn't mention end of life care but only that I wasn't going to get any further cancer treatment. If I got symptoms such as bleeding they could give me something. If I was in pain they can give me something. If I phone my specialist oncology nurses to try to talk the message says that they'll get back to me within 3 days. A week later nothing. I called again & left a message just asking if someone can call me please. I didn't get a reply. I've given up. I had a lovely oncologist before. I do have an appointment with my oncologist in 2 weeks. My son is coming with me & we will ask questions. I'm not expecting any miracles but just want to know what is going to happen to me. I'm not expecting to get any help from my consultant. 

    Regards 

    Sue 

  • Hi Sue1

     

    Thank you for getting back in touch with us. My name is Vanessa, and I am a colleague of Carole’s working on the Macmillan Cancer Support Line.

     

    It sounds like you are having a very hard time and I’m so sorry that you have given up and feel that your consultant will not offer any help. Stopping treatment is such a difficult time and can cause so many emotions for you and your family.

    In your first question to us you say that you know that your cancer isn’t curable.  And you use the word, terminal. A terminal illness is likely to make the future seem very uncertain and I’m sure you must feel at a loss as to what to do now.

    You also say no one has mentioned dying. This may be because people can and do live for varying amounts of time without active cancer treatment. I can see you have an appointment with your oncologist coming up and this may be something you want to discuss further with them at the appointment.

    I’m pleased that your son can come with you to that appointment. It’s worth having a discussion beforehand about how you want to approach this appointment. For example, are there specific questions you want answered? If so, what are they? Which are most important if time is limited?

    We would always advise writing questions down and agreeing a plan with whoever is accompanying you. For example, if you feel unable to ask questions (for whatever reason) are you happy for them to ask on your behalf?

    You may also find it helpful to look at our information on challenging conversations as it does give tips on making the most of consultations.

    There are services you can be referred to for additional support, but this does very much depend upon your needs at this time. For example, some services can provide practical support, others emotional support. You could discuss this further with your consultant or your GP.

    I do hope your specialist nurses have responded to your phone message but if not, you can speak to your consultant’s secretary and explain the situation. They may be able to chase up the specialist nurses for you.

    I also wonder if you might benefit from giving our support line a call. We often find we can better support you emotionally by talking to you. We can also explain our answers in a bit more detail over the phone, giving you the opportunity to ask more questions if needed. It can be very overwhelming not knowing how things might affect you moving forward. And although we can’t tell you exactly what to expect, we can help explain what usually happens for most people in a similar situation.

     

    I hope you find this information helpful. You can also always call one of our nurses directly if you want to talk over your concerns or require any further support.

     

     

    Take care

     

    Vanessa G, Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

    Ref VG/SF