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Inflammatory breast cancer .. so easily misdiagnosed!

lastferry
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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

  • Offline in reply to justine1970

    Hello, did you get a diagnosis in the end?

    I have something very similar to you. Mine looks almost like a love bite, feels smooth like skin and it's quite small at the moment but I'm checking it daily to see if it grows. 
    Thank you!    

  • Offline in reply to becks123

    Hi very worried parent ,

    my 20 year old daughter has found a bruised purple/red mark on her breast- said it had been tiny back in October and now is very large- when I've google it says IBC and pictures completely the same- doctors appointment tomorrow- Any other ideas what it could be?

  • Offline in reply to jules4411

    Hi,

     

    just read these post. I'm a 21 one year old with no children or breast feeding, and I've had this reasonably large mark on my breast for a few months that comes and goes, it's never hot or raised but sometimes can feel a bit tender and every now and then I get a burning sensation. I've been having a dull ache around my collarbone for a while that also comes and goes and google always point to IBC snd it's really worrying me as I know it's very aggressive and progresses quickly. 
    I'm in uni I've just had to register with another GP surgery however it's a 7-10 day wait and it's starting to really worry me, it's also worrying that IBC is also misdiagnosed a lot.

    any advice or help?

    Thankyou very much  

  • Offline in reply to awoollis

    Hi 

    Im a 51 year old menopausal woman. I started to get an excruciating pain in my breast in July last year. Within days it swelled up and darkened in colour. My nipple inverted and the skin became dimpled. The pain then began under my armpit.

    Fast forward 6 weeks and I was given a diagnosis of stage 4 inflammatory breast cancer that had spread outside of the breast and lymph nodes to both lungs and liver.

    This is the reality of having IBC. A prognosis of upto 2 years and treatment until end of life. 

    Barb

     

     

  • Offline in reply to Shasbutt

    hi   gang  i  got  ibc oct 2019  antibiotics for  a wk. Two wks later clinic  diagnoses and wk  later 12 wks pactaxil weekly the  ec 3 weekly. Then masect  and  radio. Startd then on kadcyla herceptin chemo mix cos  residual disease.  Due to finish the 14 cycles  april  but  now told its in my  brain and under arm  again. So the  year  of  chemo was waste time. I  am 48.  Kids 21 and 13.  I am v strong.  It wont win.  Big hugs to u  all. Its gud  to chat.x x x

  • Offline in reply to lillybobs

    Hi lilybobs,

    I am going through similar experience too!!! What is Ur diagnosis now?

    I am 25, recently got married, not pregnant, no children, no breast feeding, no family history. It all started on a tuesday 15/3/2021 where I started feeling a lot of pain in my left breast especially on my nipple, I thought it would go away by the morning but by the next morning it worsens and I started to notice redness all around my nipple (pretty tiny region) but the pain is unbearable it was a sharp stabbing pain, itchy, redness, enlarged breast size and I had severe sickness that I can't even eat or drink anything not even water. So I immediately went to emergency health care services as I wasn't registered with GP yet as it's been I moved to uk one month ago where they  did a physical examination and said it might be breast abscess or mastitis and suggested me to use antibiotics, paracetamol and ibuprofen for 2 days and go to emergency department of it doesn't get reduced still.I did as they suggested but my symptoms worsened in this 2 days despite medication and sickness also increased I even vomited water that I drink, I didn't go to toilet, the redness increased, my breast size increased, it is very painful and tender, and very hot and I also started feeling pain in left arm too. Then I went to ed and they did a blood test and physical education when asked I was told it looks like breast abscess or mastitis , it is a massive infection for u is what they said me and  put me on IV antibiotics,IV fluids, low dose narcotics for pain and anti sickness medicine too later one of the surgeon told me it looks like cellulitis, then the next day other doctor examined and said it looks like mastitis. I was in mere confusion then I started reading about these conditions then came across ibc, and I felt it could be that so next day I asked the doc if it is ibc he said we need to perform ultra sound to rule it out.One day later that is today 22/3/2021 they have done an ultrasound and they said they didn't  identify any fluid filled mass but found a solid mass and Inflammation in the breast. Now the surgeon who is in breast clinic say it is just mastitis as the redness is reduced and are sending me home tomorrow by advising me to use some antibiotics.

    I now don't understand why are they not suspecting ibc cause the ultrasound results also satisfy the criteria. A biopsy would make a clear diagnosis but the breast clinic surgeon says it is not necessary. I am clueless. 

    Anyone with similar experience?

    Thanks.

     

     

     

     

     

     

     

  • Offline in reply to Saisree_K

    I hope you're doing ok. It's all very worrying & I know what you mean.... if you could just get a biopsy it would be definitive. 
     

    i have recently had very sensitive painful breasts. I'm 39 & on Mirena coil for contraception for last number of years without problems. 
    I supposed this sensitivity was due to hormones.but a few days ago I noticed a bruise ( quite small, about the size of a penny) below nipple to the outside. It's very black. My husband thinks I should go to doctor as it really looks bad ( even though small) I have noticed there is also a black pimple or spot or bite mark in the Centre of bruise. I can't feel any lumps, just the pain & sensitivity. 
    I can't help worry as there's a very strong history of cancer in my family but I'm afraid to go to doctor as I don't want to over react over a small bruise. I'm giving it two weeks to see if it clears but of course I'm freaking out . I'm sure it will be ok. Just wonder  Anyone had anything similar that cleared up??  Thanks

  • Offline in reply to hennersmagoon

    Hi anyone had same me , had sore red nipple felt a lump 7 months ago , had ultrasound and mammogram plus biopsy, doctor said was infection so had antibiotics, 5 wks ago noticed a bruise in same area still there after 5 wk noticed some leaking from my nipple, been this morning for appointment had mamagram and ultrasound, doctor says can't see anything sinister but  there might be a problem deeper so have to go back in 8 wk if no change they will opparate to see wot causing the problem, iv read loads about inflammatory breast cancer being hard to diagnose , don't know what to do

  • Offline in reply to threescompany

    Hi Everyone, I hope you're all ok. I came across this post when googling symptoms, always a bad idea. I have come up with a massive, massive bruise which was really bright red and takes up a lot of one breast, with no reason for it being there. 

    I wondered if anyone could just confirm if it is a symptom of IBC, will it stay? I don't want to rush off to the doctors unnecessarily if it is literally a bruise, but if there is any chance it could be something else, I want to get it seen to as soon as possible. 

  • Offline in reply to Jayzcee

    Hello Ladies,

    Gosh what anxious times you're all having, I feel for you. So many different experiences and none of them good. My cancer isn't IBC and it was initially found on the mammogram screening programme thank god, and once something suspicious was detected progression to treatment was smooth. It sounds to me that IBC isn't well taught or recognised.

    It's your life ladies, don't take no for an answer, make a nuisance of yourselves, ask for second opinions, you are entitled to. Demand biopsies, they're not nice but they are usually conclusive. It strikes me that what is needed is drop-in Breast Clinics where you can just turn up and well trained experienced staff, be they doctors or nurses could reassure or set the ball rolling for treatment.

    Jayzcee, don't delay, better a false alarm than a shortened life. If you are determined you can get a face to face appointment, you do not have to have a telephone appointment just because that's what they offer. It's time to get things back to normal.

    All the very best you lovely ladies, I hope you soon get the information you so desperately need.

    Dotty

     

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