Invasive lobular carcinoma grade 2

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Hi there I’m just curious on peoples experience with this type of cancer. I was diagnosed in February and have been put on hormone treatment and that’s it so far. My plan says surgery in 4-12 months but other people I speak to has said that they think I should have had surgery by now. Hospital have said surgery and then possibly chemo. Not been to a hospital appointment since April and have only ever heard from my breast care nurse once since February. Does this sound normal or is my hospital slacking with my care. 
thanks for reading 

  • Hi MooMooMax welcome to the forum. Im wondering if they have you on the hormone tablets as a first line treatment to see if this reduces the tumour any before they decide to operate. That approach is not uncommon for this type of Cancer. I would have thought that they would be looking to see whether a Lumpectomy of Mastectomy is required, dependant on the size of area affected. As far as I am aware chemo is not the most effective treatment in this type of Cancer though it is used so not unheard of. 

    I am aware that there have been delays and Im afraid that if I was you I would be pestering the life out of them on a regular basis to find out what is happening and when. I can imagine  that your life will be on hold at the moment and thats not good enough you need answers and you have a right to expect them, as well as timeframes, which are firmed up and not maybe "4-12 months" for example. 

    Please do pick up the phone and remind them you are waiting to hear from them and you expect answers and do not be put off by them this is your life and no theirs.

    Please do let us know how you get on. 

    xxxx  

    gail

     
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  • Thank you for the reply. I will call them this week. Only reason I was questioning it was I was talking to someone who drinks in the pub my daughter works in and she has had this. She had the hormone treatment then surgery then chemo and she said she’s shocked I haven’t had surgery yet. 

  • Let us know how you get on. xxxx

    gail

     
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  • Tried calling them today. Ended up putting the phone down on them. My nurses tell me to call whenever and they will be given a message to call me. The guy on the end of the phone wasn’t interested in hearing what I had to say. Just told me about appointments I have had. And then told me but I have an appointment on 26th July. Was left feeling rather deflated and alone 

  • Hi MooMooMax that doesn't sound great at all You may need to make contact with the Complaints service attached to the hospital to get this moved forward as nobody seems to be listening  to you and that's not ok.

    You have a right to be told what is happening for you and to be included so find out where the complaints department is and get chatting to them about what is going on for you. Don't lose heart, this is your life, not theirs, remember that and you are never alone on here. xxx

    .

    gail

     
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