inflammatory breast cancer

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Hi there, is there anyone out there with an inflammatory breast cancer diagnosis. Know it's pretty rare and rather aggressive, but am keen to hear anyone's story if they have it, especially a positive story!

  • Hi WMK welcome to the forum and yes there are lots of ladies on the Breast Cancer thread that have or have had Inflammatory Breast Cancer and they will be along soon to offer some re-assurance and info for you. 

  • Thank you so much. Am very scared while awaiting tests etc and every ache is immediately metastatic pain. I would love to hear some positive stories as everything I've read so far has been negative in the extreme.

  • Hi WMK, I was diagnosed with IBC in 2018.  Had tri-modal treatment (chemo, surgery, radiotherapy) along with hormone and targeted therapy.  I am feeling well and living life to it's fullest.

  • Thank you so much for taking the time to reply and for your positive response. Although still very scared you have made me feel much better.

    Thank you again and I am pleased you are feeling so well.xx

  • FormerMember
    FormerMember in reply to WMK

    hi I hope you don’t mind me commenting on your thread… I’m new here and not been diagnosed with anything yet still waiting to see a dr but I was just wondering what symptoms did you have before you got diagnosed with IBC xx

  • Hi 2319,

    I am so sorry that you are having to wait to see the Dr. Waiting is so very hard. 

    As it happens I do not have inflammatory breast cancer but am lucky enough to have been diagnosed with a much less aggressive cancer. I am ashamed to say that I convinced myself, through googling symptoms and a comment made by my GP, that I had inflammatory breast cancer and was in a very different place to where I find myself since being given my results. I made myself very overanxious and unwell which also effected my friends and family unnecessarily.

    Please be kind to yourself and wait until you have a properly confirmed diagnosis and don't self diagnose as I did.

    I wish you all the very best and hope everything goes well .

    xxx

  • Hi , I'm fighting an inflammatory triple negative breast cancer stage 3, just had my second round of chemo this week and so far I'd say I'm going better than I've expected. I'm one of these people who likes to research a lot so that I'm prepared to whatever, sometimes it's bad as it gets you really scared - sometimes it helps you put your own reaction to the treatment in perspective.

    Side effects I've had so far are a bit of fatigue in the week following chemo, hair loss, occasionally nausea but treating with meds provided by the doctors, some insomnia.

    When I was diagnosed my breast was entirely red, a big lump on the top right quadrant and a big lump on my armpit pressing my arm nerves that got my arm movement limited due to the pain.

    Now just after two rounds I can barely feel the lumps, no pain in the arm, still some redness and orange peel skin but much better than before.

    It's a marathon that we can run and win and the approach I've decided to take it is to laugh and be happy as much as I can: to beat a triple negative I must be triple positive Blush

    Hang on! Love yourself! Be happy! Sending you loads of positive vibes Revolving hearts

  • Six years ago, I was diagnosed with TNBC. Perhaps this info will help you with your ' triple positivity. '

    I hope your treatment continues to go well. The response you are having is great news. My cancer was removed before chemo so I can't compare but although for me chemo was tough, it too seems to have worked well.

    Take care

    1. I
  • This has given me so much hope! I’ve just found out that my mum has inflammatory breast cancer :( awaiting results of her CT and bone scans which take place this week. She is beside herself 24/7. Crying, shaking and thinking the worst. If you have any tips to help manage this, I would be so grateful. 

    Also, if they scans show it has spread, does it mean there is no chance? 

    Kerry x

  • Hi Kerry jane I have just come across your post, can I ask how your mum is getting on? I have had triple positive inflammatory breast cancer and I got a complete pathological response from the mastectomy and I had radiation just before Christmas and I am now on hormone therapy for 10 years to help keep it away. I made a lovely friend on here  who also has ibc and hers is triple negative and she also has had a complete response with her results and she is awaiting on her radiotherapy starting in the next couple of weeks. I hope hearing some positive news will give you some hope for your Mum. Sending a big hug to you. Jane xxx