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I've just been diagnosed a week ago with IBC after a biopsy. A CT scan showing it has not spread so I am relieved about that.

Still to get my plan but appointment booked with oncologist for next week

I have a lot of pain in my breast and under my arm and have trouble trying to sleep as so uncomfortable when I lie down and wondered if anyone has any tips they can share?

Thanks in advance

  • For comfort sleeping, I recommend extra pillows!

    I have IBC onthe left side and had extreme swelling initially. I found the best sleeping position was on my side with a pillow for support.

    On the plus side, the swelling went right down after the first course of chemo so sleeping problems eased considerably after that.

  • FormerMember
    FormerMember in reply to Moggie2

    Great tip I bought a V pillow which seems to work well.

    Got results back from Bone Scan and all clear, so relieved!

    Started Chemo on Tuesday so that's the first one done.

    Wasn't anywhere near as bad as I thought it would be so felt better having got through it fine.

    Pleased to say I have been only very slightly sick on Wed morning so far and very tired but had the best sleep in weeks.

    So onwards and upwards but as others have wisely said, one step at a time x

  • I'm happy to hear your bone scan was clear ... that's brilliant news!

    My initial scans showed spots in my spine, but these have cleared following the chemotherapy.

    I completed 6 rounds of treatment (Docetaxel, Pertuzumab and Trastuzumab) and am now on immunotherapy (no more Docetaxel).

    I'm waiting for a decision on surgery, initially they felt it was too advanced......now they say I have responded better than expected to treatment and it may be an option. I should find out in 6 weeks when the whole team has had a chance to discuss me...... 

    On the plus side ..... chemotherapy cured my psoriasis as well ...

    Best of luck to you with your treatment x

  • FormerMember
    FormerMember in reply to Moggie2

    Yes I will getting a total six rounds too then surgery hopefully.

    Oh I do hope you will be able to have surgery, that sounds quite promising news.

    That's great, an extra result on your psoriasis, my husband has psoaritic arthritis and methotrexate cleared his x

    I'm rooting for you, fingers and toes are crossed and you are in my prayers xor you xx

    Best of luck to you too x

  • Hi Katy

    I hope all is going well for you.

    I had the surgery end of July followed by 21 sessions of Radiotherapy. My Immunotherapy is ongoing, but all is well so far.

    I had returned to work, but am now working from home again due to the national lockdown. Next review is end of January..... 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi lovely people I have been diagnosed with ibc hadpet scan ct scan snd awaiting chemo plan I am very scared as I feel like my boob is going to explode !and my left arm is swolen just looking for someone who has or had ibc xx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Julie, so sorry to hear you slso have IBC.  I never had any pain, but I have read that lots of ladies have said their painful breast gets better pretty quickly once chemo starts.  “The inflammatory breast cancer uk” on facebook is where you need to be for support with ibc, couldnt have made it through without them, they have so much experience with IBC.  I have finished radiation now, about 6 weeks ago, doing good, still working on full shoulder range but getting tgere.  Been swimming past two weeks.  Be kind to yourself.  Take care xx

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you so much for replying I have requested to join i b c uk on Facebook Smiley

    I am so pleased you are doing well it gives me hope xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Excellent, you will be well supported!  See you there.