Could this be ibc?

dids

Hello all ..Greetings from the UK, I'm new to this site so please forgive me if posted in wrong thread .. I need some advice .. Few weeks ago my left boob at the side near the nipple became itchy so I just scratched it . However later on night I noticed a strange rash had appeared like a purpeely red blood vessel type rash and also noticed a numb spot edge of my nipple Weird sensation cos it's itchy however I could stick a pin in numb bit and still not feel it We'll this happened again 2 weeks ago so I went to see my GP last Friday and showed him the rash and the numb spot . He gave me eumovate cream for the rash and said if it's no better in 10 days time then to come back and see him to be investigated further as he was baffled by the numb patch . My boob feels hot and both feel heavy especially when I wake up on a morning . During Sunday night early hours I was woke up with excruciating pain in my left breast never felt anything like that before it was horrendous . Yesterday rash disappeRed but tonight t's back with avengence ... I be ever so grateful for any advice I'm 41 next year I had cervical cancer back in 1999 when I was 26 so had full hysterectomy and lymphectomy  I'm just waiting apt for breast clinic to come through . 7 years ago I was at breast clinic cod found lump which was a fibrodema had that removed they told me my boobs were very glandular ??? And I had a cluster of cysts around the nipple area .. Fast fo Was given some emulve cream from dr cos skin was getting dry . My left breast got heavier and I get stabbing sort of pain. I always go round holding my breast cos itching driving me nuts .. Got no lumps or bumps that I can see or feel but my breast has become bit dimply when I lift my arm up .. My mum died 18 months ago age 66 never been ill in her life was riddled with cancer breast and pancreas brain liver lungs . I've had cervical cancer myself in 1999 needed full radical hysterectomy and lymphectomy I was 26 at time ... But this is different I know it's not mastitis cos I've had that in past and was given danazol and evening primrose capsules , this is why I'm scared it's ibc...Any advice would be appreciated thankyou xx

amarantha

Well, dids, looks like you've only one choice, drag yourself on in to the breast clinic and get some biopsies, asap. And let us know how it goes !!

dids

finally got my apt for the breast clinic today it's on Wednesday 9 th April at 10.40 am Wednesday can't come quick enough for me tbh I've just took couple of photos of my rash and one side rash has left me with scab like marks xx

Sanitysaint

HI. New to the forum. But I am a survivor of inflammatory breast cancer, stage 4, unfortunately.  Setting aside the reasons I waited so long, my IBC never had stabbing pain.  It was simply a persistant soreness.  The breast was red and warm and very firm and hard.  I went through chemotherapy fairly strongly, with what some may consider minimal reactions to chemotherapy. I have since had  a mastectomy, and am waiting for reconstruction at a later date. 

Meadow

Dids, so so sorry about your mum, and for you to have to go through this now.  Your symptoms do sound like IBC, and you know the waiting is so hard.  I am so glad you are being seen on Wednesday, and I am glad you will get the info you need.  Your post of holding your breast reminded me of my symptoms, my breast was so sore and swollen that any jiggle hurt, and also was itchy.  I had never heard of IBC, and researching on the web I found out about a type of cancer that I would soon be battling.  You can beat this aggressive cancer, just know that. Hang in there and let us know as soon as you can what you find out.  Thinking of you.

Meadow

Sanity so glad to hear of your recovery, so happy for you.

dids

Argh I'm so upset and confused and in pain ... Just an update ...Went breast clinic this morning had mammogram both breasts then went see consultant . I told him history and my concerns about IBC he said straight away we'll u don't have that so don't worry about it and there's no cancer on ur mammograms . I said  Iplease could I have a core biopsy as IBC does not show up on mammos he said no . All he said was it's obviously hormonal and u could go and get referred to a dermatologist to rule out breast infection and just take paracetamol for pain and itchy ness . I've now been left wit lot of scabs on my breast it's extremely painful won't stop itching  . I asked him about my rash and he then said we'll if it flares  again up I suppose u could ring us up here and we will see you ... I'm so frustrated My hubby said we'll u should be pleased it's not cancer but felt like I was falling on deaf ears all I wanted was a biopsy to ease my fears and I was refused . I'm 41 in 10 days time I now have to go back to my des and get refered to dermatologist  again more waiting .Sorry to rant and rave . Has anybody else been refered to dermatologist and then discovers it wasn't an infection but was I fact IBC .. I'm seriously considering paying for a biopsy to be done myself cos tbh I just feel like getting a knife and cutting it off . Oh he also said I have to get and wear a support bra 24/7 even at night he said it will be painful but u need to wear one . Just feel like crying tbh 😢😢😢 xxx

Meadow

Dids, what about a sonogram? IBC can be seen on the sonogram, perhaps this can be done.  The amount of itching you are describing sounds like more severe than I experienced....I can only speak from my own experience, and I never had scabbing.  You have to be your own best advocate, so if you are not satisfied you can get another opinion, and request a sonogram. Good wishes your way.

dids

bless u honey thank you xxx

Kicks

An appt with a Dermatologist is a VERY good idea.  There are MANY possibilities as to what is causing your pain and 'scabs'.  IBC is one of the least likely - it is rare (only between 1% and 5% of all DXd BC) while rash and pain are not rare at all and the vast majority have very different causes.  OF course, it is possible - anything is possible.  

I was told by my Dr that IBC may OR may not show on a sono/US.  For a biopsy - the person doing the biopsy MUST have an area that is suspicious to check.  IF the wrong area is done then nothing is in that small location to be found.

I never had any pain, redness, itchiness or scabs.  My first 'sign' was a lymph node that literally went from not there one night and the size of an almond the next.  In the week it took me to see my PA (she was on vacation and I didn't want to see anyone else), it had become about the size of a lime.  Had a new mammo (last was less than 2 mths 'old'), sono and biopsies that afternoon with path. report at 8 the next morning - IBC.  In the next 17 days tp start of neoadjuvant chemo I did develope an enlarged breast, peau d'orange and inverted nipple but never pain, redness, itchiness or scabs.  

We are each so different and how our individual bodies react.  There is no one set of 'rules' that will be the exact same with anything or how everyone will react.   FIND out what is going on as 'something' is - BUT be careful to stay away from that quack "Dr Google" and self DXing/assuming the 'worst'.  We do have to be our own 'best advocate' (and being dilligent) but that doesn't mean that what (at times) we have decided, is the only answer that is correct.  Request/Get 2nd (or 3rd or more) opinion(s) if you feel you need them.

alicki

Hi,

My issue didn't turn out to be IBC, but some fibrocystic thing with inflammation. I would recommend that you get yourself asap to the Breast Clinic of Princesse Grace Hospital in London and See Prof. Mokbel (not sure I can name docs on this forum). He's an expert on IBC, extremely nice person and you'll have an appointment within 24 hours and results within 48 hours if you say it's urgent

It's the best way to go to get answers since you're in the UK.

I don't know any other addresses.

Cheers,

Alicki

PS: Hi Kicks!