Dear All
Has anyone heard of this ? I went to our nurse at the surgery in April with a rash on my right breast it was inflamed and the reason i had noticed it my Bra had cut into my breast and made red rings but not the other side. Was given antibiotic for mastitis, and told if it did not settle down then to make an app. with GP.I did late April GP said she did not like the look of it sent me for urgent app. to Breat care clinic, what i did not know was she had mentioned Breast cancer in her letter. Saw Specialist in May told me he thought it was an inflammation or could be a very rare skin cancer but that was very unlikely. I had mammogram, ultrsound and biopsy.My nipple was inverted at the time the skin around the colour of red and orange and pitted like orange peel.When i rang for the results i was told i had chronic dermatitis and it might be helpful for me to see a dermatologist. No appointment was made, the letter was sent to another doctor at the practise who has never looked after me. He made an app. for the dermatologist but not until the Sep.I had no follow up from the hospital i was just told that it was definitely dermatitis and if anything changed to come back.In August i developed a heat rash very strange my grandson had it as well, i was going abroad on holiday so went to Keydoc. Was told that my Lymph glands were up but to take antihistermine.On the plane going over underneath my arm really hurt and there was quite a big lump.The friend i was staying with was a former senior theatre sister and she told me she just did not like the look of the lump or my breast and before i left spain rang the breast care unit they got me in to see another specialist within three days of getting home, he ordered ultrsound, mammagram etc.I had the ultrsound three days later, the doctor did a biopsy straight away under my arm and the following thursday the biggest shock ever. I did not take anyone with me because i thought it was just another inflammation, and i had been told in June i definitely did not have cancer. I had Grade 3 stage 3 breast cancer with secondaries. I had a total mastectomy on Oct 9th removal of twelve lymph glands six of which were cancerous. I was HER2 positive which means the cancer is very aggressive.
Since reading about IBC apparently it does not show up on Mammograms or ultrsound and it also can evade the biopsy, it is also often misdiagnosed for mastitis.
Just wonder if anyone else has any knowledge or experience. Apparently it is called the silent killer by the Mayo clinic in America it just spreads
Kate
Hi Katie
You may wish to read BCC’s factsheet on IBC whilst awaiting replies from fellow users, you can read it via the following link:
breastcancercare.org.uk/docs/inflammatory_feb_06_0.pdf
Best wishes
Lucy
Lucy (BCC facilitator)
I’m a bit confused. Does IBC stand for invasive breast cancer or inflammatory breast cancer?
Katie I’m so sorry to hear about your misdiagnosis and can’t believe it took so long to diagnose you. Is your breast cancer invasive or inflammatory?
Best wishes
Ruby
Hi Ruby
IBC refers to inflammatory breast cancer.
Best wishes
Lucy
Ruby
It is inflammatory breast cancer i had never heard of it until i did some research on the Mayo usa site, no one i know has ever heard of it , i have not even been told if i had that or not, i have only just found out about it and waiting until my oncologist comes back from holiday to ask him if that is what i have got. It was never mentioned at the Breast Care Unit by the surgeon just that i had a very difficult to diagnose cancer
Thanks for your wishes, i feel so much better now i am with people who totally understand everything you are going through
Love and Best wishes
Katex
Hi again Kate
Whatever it is you have there will be people here who can share their journey/situation with you. My BC was also grade 3 and I think stage 3 and is HER2+. When you wrote that you were HER2+ I wondered if you had invasive breast cancer and not inflammatory breast cancer as didn’t know inflammatory breast cancer could be HER2+ however maybe it can? I actually don’t know much about inflammatory breast cancer as mine is invasive but there are definitely women on this site who have it so I’m sure somebody will get in touch with you.
Lots of love
Ruby xxx
Hi Ruby
One of my tumours was invasive in my breast that was the small one and the other one which was 6cm ! was in situ, it had also spread into my lymph glands, it is so good to be able to talk about this as one of my daughters said that with everyone on this site there is more knowledge put together than any one oncologist can give you and i think she may be right !!
Love and best wishes
Katexxx
Hello Kate,
I was dx with IBC in Dec 2006, (happy christmas!)
In answer to your original question, YES, it is often misdiagnosed and OFTEN for mastitis.
It does not show on either mammo or ultrasound scans and has often spread to another site by the time it is finally dx.
We are told over and over again to check for lumps, and indeed we should, but we need to shout form the rooftops
‘You don’t have to have a lump to have breast cancer’.
Not enough of us know this.
I certinly had never heard of IBC until my dx.
By the way I am also HER2+
Take care
Mabel x
Mabel thank you for your posting , what treatment have you had and where are in the cycle would love to hear your story and how you were diagnosed did it come from pathology or did the surgeon pick it up because of the visual.?
Kind Regards and love
Katexxx
Hi again Kate,
Golly how long have you got
I’ve had 10 x chemo 4 x FEC 6 X TAxotere, including 8 cycles of herceptin.
At the end of chemo my breast skin was still thick so the surgeons were reluctant to operate for fear of spread. However, the cancer began to attack my skin and it was getting worse so i asked for 2nd opinion.
I had emergnecy mast in Nov 06. herceptin was stopped as it was deemed to have failed, or only worked in combo with the chemo, they couldn’t be sure.
I had 25 rads but 3 months later had local recurrence, very typical of IBC. WLE with clear margins. Taken off tamoxifen and put on femera.
Skin mets to mast scar summer 07.
zoladex intoduced to help control the skin mets.
Under local onc and Marsden, 3 monthly checks.
Husband says i’m bleeding the NHS dry! (I think he’s joking!!)
Doing well and back working!
Surgeon dx visually but ordered biopsies for confirmation. GP had prescribed anti b’s thinking it was probably an infection as ‘you don’t get pain with bc’
WRONG!!!
Sound naff but I hope yours turns out to be invasive rather than inflammatory, sure you understand what I mean.
Take care,
love
mabelx
Hi. I am suffering from inflammatory breast cancer and have been for the last fourteen months.
Have had chemo, radiation but unfortunately they will not remove the breast due to skin involvement. Similar signs have now started in the other breast and am now awaiting a plan which I hear about on Monday.
I have heard of some good results mine is just not going to well at the moment.
JEN
Dear Jen Mabel and everyone
Thanks for your messages, do you feel as if you are getting the support that you need from your oncology dept.It,s just that no one ever talks about IBC as if it does not really exist, i had never heard of it. Do you feel that the doctors know enough about it, is it genetic where does it come from lots of questions i would love answering from someone within the field of expertise of the oncology profession.
Lots of love
Kate xxxx
Hi Kate my name is Victoria, my Aunt has asked me to send you a letter she wrote out, I have typed it below.
Dear Kate,
My name is Linda, I am 48 and I was diagnosed with IBC in May 2007. I’d had a mammogram in January 2007 which was fine. Round about April I was taking shooting pains in my right breast. In May I went to my GP who gave me an antibiotic thinking I had an infection because of the redness round the breast but he also referred me to the breast clinic. Within two weeks I was sent for a needle test then a biopsy and was diagnosed with IBC which I had never heard of. At that moment shock set in and I thought my life was over. I was very upset because I have 4 children. My youngest is 7 years old. I also have one sister whom I would be very close to and of course my husband.
After one week and support from family and friends I was called back to speak to my consultant. I was given Chemo which started in May to shrink my 10cm tumour. The Chemo went on until September. In October I had a full Mastectomy and had 40 lymph glands removed, the cancer was in all 40. In December I had 25 radiotherapy treatments. I feel great and look better than i did before my diagnoses.
Prayer and a positive outlook helped my through this. Of course you’ll have your bad days but keep on picking yourself up again and good luck. I’ll keep you in my prayers. God Bless.
Love Linda.
P.s are you from N.Ireland?
Dear Linda and Victoria
Thank you so much for letter i gasped about the lymph glands, you sound so positive and well by the tone of your letter.
I will pray for you as well and will try to be so positive if you can do it then so can i , no i am not from N.Ireland but i have been there twice and went out with a lovely man from Omagh those were the days he had the most beautiful blue eyes !!!.I live in Northamptonshire and i am spending time when i am confined to the house on campaigning for the main intensive cancer care ward in the county, i am not going to give up i just want the patients to have the very best of care. I was brought up “If you do not want that doing to you why would you expect to be able to do it to someone else”
Lots of love and thank you and the very best of wishes to you and all your family
Kate xxxx
Mabel…Hi Jenny here, being treated in Southend, Essex.
Been to oncologist this week, trying to get on trial at Chelmsford if not running another lot of chemotherapy alongside herceptin.