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IBC

Ceecee81
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Hi everyone, 

I don't really know where to start.....I have just been diagnosed with IBC, I've suspected it for around 2 weeks, though been struggling to get people to listen after my initial ultrasound 3 months ago came back as normal glandular changes. I have CT and bone scans next week to assess any spread, I guess. I'm really struggling at the moment with just sitting and waiting, since yesterday the nodes in my clavicle have also started enlarging (they biopsied the enlarged one in my armpit) and I just feel like I'm drowning. Knowing this is so aggressive and seeing changes on a daily basis is petrifying me! I feel frustrated that it's going to be at least after Christmas until any treatment starts, but told every day counts in this type of cancer with how aggressive it is. Can anyone give me any advice? x

  • Welcome to the forum Ceecee although I'm sorry to hear about your diagnosis and for the reason you are posting.

    Hopefully some of our members will reply soon to offer their support and advice but I just wanted to stop by and give you our cancer nurses telephone number in case you wanted to have a chat with them about this. Their lines are open Monday - Friday between 9a.m - 5p.m on 0808 800 4040 (freephone).

    Do keep us updated when you can Ceecee and we'll have our fingers crossed things will start moving more quickly once you've had your scans.

    Kind regards, 

    Steph, Cancer Chat Moderator

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    Hello ceecee81; I am so sorry to hear of your diagnosis and I confess straight away that I have not had any experience of IBC from anyone I have known.  I had to look it up on this website.  I am also sorry that it appears that you are coping with this on your own; do you not have family and/or friends with whom you can talk about your worries?  You can drive yourself into a terrible state if you go over and over your worries by yourself.  I just wanted to say hello to you and I don't want you to feel that nobody cares; it is most probably that many people don't have experience of IBC either.  But I know that people will want to be supportive and I hope you hear some general practical advice from people more knowledgeable than myself.  Long-distance hugs from me.

  • Offline in reply to Annieliz
    Thank you for the replies. I am not on my own, I have a wonderful husband and 2 children (3&4) and a really good support network of friends. I just want to protect them all until I know the full picture. I'm just getting really anxious now as another day has passed, another new change has occurred, sitting having a cup of tea yesterday and just thinking, "I'm sat with a cup of tea, like normal and inside me my body is being attacked and more than likely a step closer to taking me from my kids" it's just horrifying. I keep going in cycles of cope/crack on to can't even get up of the sofa, like I'm rooted. I know this is all normal to feel this way but I need to find more fight!!! Pull myself together! I'm usually so black and white. Anyway I'll keep you posted. Thank you x
  • Offline in reply to Ceecee81

    Hi again.  Perhaps you can choose one person with whom to bare your soul?  Do your think your husband knows that you are not sharing everything with him?   What would you want your husband to do if the position was reversed?  Not my business though, I realise that.  I just feel for your because I am someone who can worry myself into a state at the drop of a hat (or the medical equivalent).  It would be nice if you could let us know how you are doing but don't feel you have to do so.

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