Inflammatory breast cancer .. so easily misdiagnosed!

I have inflammatory breast cancer which was firstly diagnosed as mastitis in Jan 09. Did not respond to antibiotic and was referred for biopsy. This is a particularly aggressive cancer and I had chemo;bilateral mastectomy and radiotherapy ending at end of Oct 09. You can imagine my fear when a red area appeared on my chest. Oncologist suggested a fungal infection and prescribed canestan; GP thought a form of dermatitis due to radiotherapy and prescribed a steroid cream for one month. Luckily , I had a routine app. with oncologist who did not think it was a recurrence of cancer, but referred me to surgeon for biopsy. Surgeon was 99% sure it was not cancer recurrence; so you can imagine my shock, on the mouth of Christmas, to be told the biopsy was positive! Saw another two surgeons who arranged bone scans and CAT scans. They were clear and surgery was going to be carried out until I pointed out some 'gnat bites' on my left side. They knew then that systemic treatment needed to be given. Currently on chemo tablets. seem very mild in comparison to FEC and Taxotare which nearly killed me. however, the inflammation and 'gnat bites' are not really improving; although it is early days ... 8 days treatment so far. I will see oncologist in two weeks time. I am very well in every otherway .. and hope to beat the odds and conquer this horrible cancer.

Anyone out there with a similar history. I know it's rare .. hence the misdiagnoses. Any help appreciated.

Lastferry

  • Oh no I'm so sorry

    my symptoms are similar to yours I'm going to call my GP tomorrow

     

    how are you coping? 

  • How long have you had the pain? Def go to the GP and get them to refer you, just to be on the safe side. Hopefully it's nothing but always best to get everything checked. I'm 37 so got referred under the " urgent under 40 2 week wait referral"

    Im ok thank you , feels like it's been going on forever now. I've had a mastectomy, reconstruction and start chemo on Tuesday.

    Chances are it's nothing but always good to get checked. I have everything crossed for you x

  • Hi Hannah, I'm so sorry you've had to go through so much. How are you holding up?

    I don't know if you'll even read this but I just got an urgent referral yesterday. She said it'll be the 4 week wait one because she couldn't find a lump and its christmas but it's concerning enough to get checked asap. I'm 35 years old.

    Since August I noticed my right breast feeling fuller, heavier and slowly getting more enlarged. I thought it may just be hormones and cycle stuff since I have a mirena IUD. But fast forward to November and one day I looked in the mirror quite shocked at how different my right breast looked to the left. If i can describe it as droopy and my nipple is almost pointing downwards i guess from the swelling and "weight". I've never had kids and my right areola has never looked so abnormally large. The GP said there was definitely some thickness but also mentioned she felt some on the left too. I particuarly found it very painful when she was really pressing deep into my breast on the problem side and it felt different than the left.

    All I can say is I've never experienced this feeling of "something is just not right" with my right breast. It feels so heavy, swollen and I've only just started to feel a weird consistent pain for the last 3 weeks, almost 3 months after i first noticed the heaviness and enlargement. I'm not an over reacter hence why I waited for a bit to see if it was cycle changes but it 100% isn't. I've never felt like something is more wrong than i do now with my right breast. 

    Your story resonated with me, I hope you're doing okay. Merry Christmas x