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Back to breast pain 10 month after radiotherapy

daisydoowhereareyou1
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Can anyone give me a bit of help. Today I just ended up losing the plot. My mum is 86 she was diagnosed with lung cancer this time last year then had radiotherapy and was given the all clear and 3 month referrals. Since the radiotherapy she’s had the worst back pain radiating under her arm into her breast and nipple she says it’s like she’s on fire and extremely painful more in the morning. She’s been back to the hospital and our gp’s countless times she’s had Ct scan and they’ve said nothing untoward there. My mum says she’s still got cancer and convinced herself of this.  Macmillan came round about 6 month ago and advised her about meds and that was it we’ve not seen them again. 
last couple of week she’s been at the gps 4 times she’s in that much pain they’ve moved her from morphine to oxycodone and pregabalin and she like a zombie. My dad has Parkinson’s and she’s arguing with him about the meds. My partners mum dies 2 days ago and then this morning I rang dad to speak to her but she was screaming in agony.. 

i rang the hospital's hotline they just said nothing there. I’ve rang loads of numbers for Macmillan I just want someone to come and sit with her properly so she can talk to them. I’ve been in hysterics all day because nobody is getting back to me. I thought when Macmillan came 6 month ago they would keep coming every now and again. 
im sick of taking her to the gp because he goes off the hospital's letters and says nothing there. I’m sure they think she’s making it up. I’m really struggling I’m not a doctor and I don’t know what to do. 

i rang Macmillan at 9am  for my local team to ring me today and nobody has contacted me. 

am I doing something wrong ? Please help 

  • Hi and thank you for posting,

    I am sorry to learn of your mum's situation this sounds very distressing. I was also sad to read that your partner's mum had died. This must be a difficult time for you all.

    It is frustrating when you cannot get hold of people. If your mum has a cancer nurse specialist (CNS) with whom you can speak, they may also be able to contact the Macmillan team on her behalf if you do not hear from them.  It is also worth clarifying with the Macmillan team how often they will be checking in with your mum.

    I wondered if the doctors have explained to your mum if it isn't cancer causing the pain what else it might be. If it is a side effect of the radiotherapy or if it could be caused by something else. It might also be worth asking if having another scan such as an MRI might be helpful to try and find out what is causing your mum to have so much pain.

    I appreciate it can be very frustrating, having to go to the GP so many times, at the same time it can be trial and error to get the pain relief right because everyone is so different.

    I do hope you have had some contact from the Macmillan team by the time you get this reply.

    If you would like to talk things through with one of our helpline nurses you would be very welcome. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care

    Jemma

  • Offline in reply to CRUK Nurse Jemma

    Hi 

    thanks for contacting me. No I’ve still not had a call. I’m not sure who her cancer nurse is because we have never really spoken to anyone only on Christie visits when we speak to the consultant. I think your right though I’m going to ask our gp for an mri. 
    I do feel upset about it all because mum keeps saying they are not bothering with her because she’s old. 
    we have given her the meds today and she’s just either sat there looking like a zombie or going to sleep. This time last year she was pottering about in the garden and making pies I don’t think we will get to see that again in the near future. 
    Anyway thanks for your help I’ll try the gp again. X

  • Offline

    Hi jemma 

    a lady from Macmillan her name was jemma as well. She rang me on no caller Id at 15.09 just after I posted. We had a discussion and she said mum needed a visit and she would text me contact details for her and her colleague going forward and also ring me with a time she would visit tomorrow. Anyway nobody’s rang back about the visit tomorrow and I’ve received no text with contact details at 18.55 .  So I’m none the wiser and again feeling let down. I just don’t know what to say. 

  • in reply to daisydoowhereareyou1

    Hello Daisydoowhereareyou1

    I'm so sorry to read about the situation you find yourself in and that your Mum is struggling with pain management. I can understand the frustration you're experiencing when you've repeatedly reached out to health professionals for support with Mum's pain management and yet things are no better. 

    As it's now the weekend and you've no confirmation if someone will be calling to see Mum tomorrow, I'd suggest calling NHS 111 for advice and support. Often they have contact details for other local services but if a home visit from a doctor is what's needed then they will also be able to arrange this. 

    I really do hope that you can make contact with someone who can give your Mum, and you all as a family, the support needed to improve Mum's pain management. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • in reply to daisydoowhereareyou1

    Daisydoowhereareyou1 and thanks for getting back to us again,

    I am sorry to hear about your situation. I do hope that by now you have heard from the Macmillan nurse.

    If you haven't heard anything then I would get in contact with your mum's GP to see If you can find out more.

    If you would like to talk any of this through with one of the nurses on the helpline then you are welcome to give us a call.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    All the best,

    Catherine

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