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

  • Hi everyone,

    I'm also very worried, was wondering if anyone has had these symptoms before?

    In 2017 I got an aggressive case of Folliculitis on my breasts, chest and neck, it was treated with hibiscrub and fucidin but the sores on my breasts never healed and ate into my skin so I have large round scars. Since then my breasts have been swollen 2-3 cup sizes!

    Now, I'm 28 and never been pregnant, I have open sores oozing on my breasts, painful nipples that sometimes turn flat or are stiff, sometimes only the one, stabbing sensations through to my ribs and red hot skin on my entire breast with crusty dry flaking scabs.

    I have been on about 8 courses of antibiotics, steroid creams, fungal creams and derma500, nothing has worked and dermatology discharged me on the grounds they left the biopsy of a pustule so long it burst.

    I've seen my Dr and voiced that I'm extremely worried and in a lot of pain, breast cancer is in my family and I have an impaired immune system. She examined me for lumps and gave me antibiotics, which are not working. I'm supposed to see her for a follow up on Friday but am calling tomorrow as I'm getting worse!

    Am I overreacting? What should I do? I'm so scared and worried I'm not being heard.

  • Dear Bethanyannie,

    Ask for a second opinion and referral to a specialist. It may be what you need is a dermatologist rather than a breast care specialist. It sounds like you've been overloaded with antibiotics which is not good for your immune system and your gut bacteria, allowing an overgrowth of fungi/yeasts. 
     

    Be strong and fight for your right to be heard and treated appropriately. 
     

    Dotty26

  • Hello Jayzcee

    Hope you're doing well. I am having the same symptom; massive redness/mottling over breast. Currently on antibiotics for mastitis as I am breastfeeding my 4 week old.

    One breast responding well to antibiotic treatment. It's the other that has this redness. No swelling, no pain, no orange peel skin. 

    Any advice or information would be greatly received. 
     

    Lucy, a very worried new mum. 

  • Hi Lucy 

    So sorry you're having all this concern, especially with such a new baby to concern yourself with too! One thing I would say is that pregnancy and the months afterward do a million different things to our bodies, I have marks and colourations all over which weren't there before I had a baby, so please try not to worry too much. Breast feeding I imagine will only put more stress on that (I chose not to so can't comment too much) and I expect it is all just related but definitely worth getting it checked out. 
     

    I myself have been to the breast clinic now and have had an ultrasound and am lucky in that they found nothing wrong. I'm assured boobs can just bruise with relatively no cause at times and that's all they think it is, or some ruptured blood vessels. 
     

    Get yourself checked out as soon as you can bear it, I am sure you will be just fine 

  • Thanks for your reply Jayzcee

    Really pleased you've had a positive outcome from your check.

    I called the GP back yesterday and insisted they refer me to the breast clinic; they have called today to confirm an appointment a week tomorrow. It's eases my mind that I have an appointment so soon, but what a long week it will feel.

    Will keep you posted.

  • Good for you for making sure they refer you! You can never be too certain with this things and a clean bill of boob health is a great feeling too. 
     

    a long week it will be indeed but fingers crossed for a very positive outcome! I will be thinking of you; let me know how you get on 

     

    J x 

  • I am 30 years old, went to gp about a recurring pain in my left breast last October was told to take pain killers, get a bra fitting & loose some weight, I was 10 months postpartum on this appointment so left feeling embarrassed as i was aware my body hadn't quite 'bounced back' but am a normal size 12/14. I had a little sob to myself when I got in the car (blame the hormones) and off i went and lived with the pain until recently...Fast forward to now, the pain has got worse and is more wide spread across my breast and has spread to my underarm, it feels like a burning throb, if I pick my daughter up and she pushes on that area it really hurts and lingers for minutes. Have finally had a referral to breast clinic and have an appointment this Friday... I feel sick with nerves but am pleased I am finally being seen. H x

  • Hi heathers29

    Did you get your results ? I hope everything was ok. I have exactly  the same symptoms. Have had a painful left breast for 6 months now ....didn't think much of it a first, went to the doctor back in november and they weren't worried but went back last week as it's continued and I have now have very lumpy breast tissue so they have referred me to the breast clinic. my left breast feels heavy and slightly swollen and there is always a dull ache and warming feeling as well as localised pain above my nipple and into my armpit, but no rash. I just wondered how you got on or of anyone else has had similar. 

     

  • Hi 

    just wondered what the outcome was 

  • Hi,

    Unfortunately I got diagnosed with breast cancer. Not inflammatory but an invasive ductal carcinoma. When I went to the breast clinic they couldn't feel anything and assured me it was prob nothing but as soon as they did the ultrasound they told me they had found an area that was looking very suspicious and they expected it to be cancer ...and they were right .