• 10 replies
  • 3 subscribers

just received a diagnosis of IBC yesterday and pretty terrified at mo

i know the odds are about as bad as it gets and I have three very small children

can anyone offer support or hope?

  • Morning

    Sorry to read about your Inflammatory BC diagnosis and seeing you joining us here :-/

    Don't know about 'as bad as it gets' sounds like something Dr Google would tell you ?

    OK, IBC is considered fairly uncommon and an aggressive type but the treatment for breast cancer is very effective and around 95% successfully treated and go on to live (almost) normal lives post treatment. J my better half was diagnosed with HER2+ positive BC and that type is also considered 'up there' as an aggressive type - that was in 2012 and she is out of the treatment tunnel and has has no evidence of cancer at her annual reviews since then. So do hang onto that thought for reassurance.

    The normal treatment regime for IBC  is chemo prior to surgery (don't know if this has been mentioned to you ?)  The chemo will sound well scary especially with 3 small children around but it is normal to have chemo first with IBC as it is a full body treatment and will zap cancer cells (if any) have moved from the breast area before surgery takes place.

    You are at the first step on a rocky road but this is do'able - there will be a couple of tough duvet days now and again but chemo is usually given every 3 weeks you won't feel cr&p for most of that time.

    As IBC is uncommon there is the Main Breast Group here you should also join as it is a lot more active than the IBC group and also has a regular monthly chemo chat discussion where those having or have had chemo help each other with support and advice.

    I hope this is of some help for you at a tough time, everyone felt like this was a widowmaker when first diagnosed but that is far from the truth. Keep posting and asking any questions you may have either here or in the main breast group, we're all here to help if we can.

    Hugs, G n' J

  • FormerMember
    FormerMember in reply to Dreamthief

    Thank you- that is reassuring 

    its so hard in this waiting period where i kinda want to get started with tackling it and having to wait- especially when I can see how much in grown even in two weeks! 

    Definitely trying not to Dr Google but a few detailed and formal looking websites mentioning things like generally fatal and median survival of 57 months tend to scare the shit out of you.

    Don’t want to leave these kiddies behind!

    good advice re the main breast cancer group too

  • Hi 

    The speed of this earlier is the main reason they offer chemo first as a lot of IBC patients have been through a lengthy period of getting this diagnosed. Hope yours was found quickly as the biggest issue with IBC is that some lymphnodes can already be affected when diagnosed if too much time is wasted by unknowing GP's handing out anti-biotic or exzema creams instead of immediate referral as in a lot of cases there are no lumps to find on examination :-/

    Were you given any other information from the biopsy report like ER/PR and HER2 status ?

    Take care, G n' J

  • FormerMember
    FormerMember in reply to Dreamthief

    I was a breastfeeding mum so when I found a lump in October to be fair we all thought mastitis

    but then I had 6 different courses of antibiotics and 5 needle aspirations before they realised they weren’t doing anything and biopsied 

    Will be in for PET scans and MRI this week I think and due to start chemo in the new year so no further info re HER2 etc... yet. Is it more likely I have a hormone receptive one if it’s grown during pregnancy and/or breastfeeding?

    so right now I’m panicking imagining how far it’s spread. To be fair I know I should prepare for it to be at least stage 3 since there was already a significant lump and inflamed skin two months before diagnosis 

    im just sat imaging twinges everywhere and can ‘feel’ it spreading. I know it’s silly but I’m frightened

    just want to start tackling it fast and know where I’m up to

  • FormerMember

    Hi there . I had the same diagnosis in Nov this year .Pretty scary stuff aint it. Just had first chemo and the cold cap and it was ok . Staff are fabulous and everything is well explained. I like you am now on the treadmill that is chemo . I am a grandma with two kids and two small grandkids .I would say stay away from Dr Google . Trust in the staff and the process and keep your chin up .


  • Hi

    How did you get on with the MRI and PET scans and have you any further results back as yet ?

    G n' J Christmas tree

  • FormerMember
    FormerMember in reply to Dreamthief


    sorry I’ve not been on here lately

    hsve third EC chemo already next Wednesday- weeks ticking by

    have Grade 3 TN inflammatory- so plenty to

    worry about - 

    luckily it’s only spread into lymph nodes so far so still stage 3- though evidence of one supra clavicle inflammation from last MRI

    i get latest MRI today to show impact of last two chemo 

    wish me luck xx

  • Hiya 

    Please don't feel the need to apologise, just dip in and out whenever you want Slight smile

    As you are TN they may be giving you full doses of your chemo regime as apart from surgery and radiotherapy there are no 'follow up' meds for Triple Neg.

    Are you staying with the EC or switching to a different chemo drug at some time; possibly depending on todays MRI results I suppose ?

    Fingers crossed for that clavicle result too, G n' J

  • FormerMember
    FormerMember in reply to Dreamthief

    Scanxiety over for another while!

    MRI shows cancer has shrunk from 10cm to 6cm after two EC

    im having another EC Wednesday before moving to Carboplatin and paclitaxel

    then surgery and rads

    re clavicle (- she referred to it as a pectoral node today) it is not necessarily in an inoperable location and they may or may not remove it also - great news if possible

    lymph nodes showed significant reduction in swelling too though this is harder to accurately measure apparently 

    feeling hopeful x

  • Hi

    Good news from the MRI results - Nice to get reassurance the EC is working too Thumbsup

    Fingers crossed the pectoral node is suffering the same fate and may not need surgery but great to know it is operable as these are quite high up.

    Take care, G n' J