possible ibc

Hi all, would really appreciate some advice from those of you that have been through this.
Saw GP initially with an orange peel like rash on breast who referred me straight to a breast consultant. Had ultrasound and mammogram which seemed ok but showed thickening. Also had a biopsy and should get results on thursday. The consultant did seem quite convinced that it was ibc but also said that the biopsy may not show anything and that I may need another one. Does anyone know why this is? Surely if there are cancerous cells then these would be shown up?
Waiting is the hardest time and we would all just rather know so that I can focus on a treatment plan.
Any help or advice that anyone can give me would be so appreciated.

Thanks juju

ah, just found this, i answered your second post. Did not spot you said ibc.

I am not an expert at all, seems like he recognises ibc from the appearance of the skin, but it is early so there is nothing showing on the scan and as I said before he might not get a good result from the firt biopsy and need to try again.

Its a rare cancer, so it might take some time before someone who knows better than my comes along. You might want to ring the helpline tomorrow, they will certainly know more

Hi Juju

I was DX with IBC nearly 3 years ago now. The symptons which sent me to the GP were a very swollen hot red breast with strange skin (I now know what they call orange peel)

At the Breast clinic I had biopsies of my breast but I do remember the person doing it saying that it was difficult to know exactly where to insert the biopsy gun - it was a very hit and miss affair. For that reason she took several in different places. If it does turn out to be IBC don’t worry if the suggested treatment plan is chemo first. That’s normal.

Ask anything you want - I will try and answer- pm if you prefer- - the waiting is one of the hardest parts of all this

Take Care


Hi another recently dx IBC lady here, I only presented with ‘orange peel’ skin and the biopsys confirmed cancer, as Andie has said with her , my consultant had to take several samples.I unlike many other ladies did not have red, hot swollen breast,I hope your results turn out to be nothing to worry about,but if not please know we are here for you,for advice or a shoulder to lean on ,anything.
Let us know how you get on, don’t google ,you will only scare yourself and most info is out of date and not relevant to todays treatments which are very good, I have had a very good response to chemo and will be having surgery in a few weeks time.
take care

I am in a similar position saw consultant last week and had biopsy and ultrasound - confirmed IBC had a bone scan today and seeing oncologist on Friday also have CT scan booked. Mams and ultrasound often do not show IBC but I had the biopsy taken from 5 different areas including the lymph glands under my arm. They confirmed the ibc. Now I am waiting to talk to onc to see when I can start the chemo and get rid of this thing or at least get it under control. I have been told I will have 28 weeks chemo, followed by Mastectomy, raditherapy and possible reconstruction - In 18 months time I hope to be back to normal or as normal as I have ever been.

I am a bit confused here I posted a question saw it on the site and got some replies from a couple of ladies but now it seems to have disappeard anyone know how I get back to my original post to see what other people are saying?

sometimes if people have been doing a lot of posts a thread can sink lower down the list and be a few pages away. do you remember what section you posted it in. If you look at the links on the left and click one of them you might find it

If you save this, and any other threadss that are of interest you, using the button in the top right hand corner, you can then easily find them in your “saved discussions” area. x

I have recently been diagnosed and start my first chemo next week.I was told that biopsy does not always show the cells if the biopsy has not been taken from the diseased area - I had five taken and mine did show up.
my lump is 7cm which is very large so the onc told me the cells are probably in my lymph system therefore I am having full body chemo. having read the literature it sounds dreadful but just trusting it is all worth while.

Hi marybrim goodness that is a big lump, but try not to loose faith there are alot who have had big lumps & node involvement & doing well

All the best to you
Mekala x

hi Marybrim,

I just wanted to give you some encouragement, and to assure you that its all worthwhile. I am 41, was dx in september, and my breast was the size of a melon { i was mis-diag for 6 months), i had multiple lymph nodes affected but it hadnt spread anywhere else. By the time i had finished 6 chemos and had my mastectomy and all nodes removed, the lump removed was still 12cm, but the surgeon managed to get a small clear margin. At my follow up appt, i found out that all my lymph nodes were clear which was unbelievable, and proved that the chemo had done its job, (i didnt see any change in the lump all through chemo, so thought it wasnt working) I have just finished 4 more chemos and 25 rads which were done to make sure any tiny cells which may have still been there, will have been zapped too! The last 11 months havnt been easy for me, or my 20 year old daughter but u will come out the other side and be really proud of yourself. My problem now is that ive been so strong all the way through it, it is just hitting me what ive been through and im going to receive some counselling to help me get my head round it. Good luck with everything, i will be thinking about you, and there is light at the end of the tunnel xxxx

Thank you Kez for the encouragement start my chemo tomorrow and I am terrified of the side effects.

Hi Marybrim,

I don’t post very often these days but I wanted to offer some encouragement. I was diagnosed in March 09 with a 12cm tumour. I had FEC and Tax chemotherapy then mastectomy with node removal then radiotherapy and 1 year of Herceptin. Pathology results after surgery showed that the tumour had reduced to 1.5cm removed with clear margins. Two years on I’ve no evidence of any recurrence. No point in denying the treatment can be hard going but also very effective.

There are ways to prevent or reduce most of the side effects and your medical team will do their best to minimise them. Everyone is different so they’ll base treatment of the effects on what you tell them. You must tell them honestly how you’ve been feeling, the longer you leave it the more difficult it is to deal with. The others who’ve been through this will tell you, the weirdest things can cause the most discomfort. One of the things they rarely tell you in advance is that constipation can be a big problem. Personally, I found it more of a problem than the hair loss. Try to drink as much water as you can before and immediately after each treatment. At the first sign, take whatever remedy your team offer. Movicol and Lactulose are common ones and can be taken together.

This is a good place to find accurate information and support. Please try to ignore most of what you find on the internet about IBC it’s mostly not up to date.

I hope your 1st treatment goes off without any problems. Take a magazine and try to relax.

Jan xx

Hi, I had DCIS 2 years ago in my left breast. I have noticed what appears to be a small orange looking bruise on the top of my right
breast. It’s tender to touch and fells like needles when I shower.
I have changed my soap powder and shower gel and it makes no difference.
I had it for 2 months and I feel stupid as I am sure it’s nothing.
I hope you don’t mind me asking for your advice.

Hi Kate,

You’re not stupid, just vigilant like the rest of us. Get it checked. It probably is nothing but it’s not worth the risk for the few hours of your time it will take to have it looked at. Are you still in touch with your BCN? If you are I would give her a call and ask for appointment at your breast clinic. If not, your GP should be able to refer you. Many GPs are not aware of the symptoms of IBC (mine wasn’t) and are still reluctant to refer if there’s no lump.

Please come back and let us know how you get on.

Jan xx

I am going to make an appointment to see my BCN. You are right it’s
not worth the risk.
I am sure it will prove to be nothing. Thanks you have made be realize that I am not going to waste the BCN time.
Kate x

it certainly is not wasting the BCN’s time, and if it turns out to be nothing it will be a pleasant change for her having good news to tell someone

Hey all, am new to this forum and this cancer! I am 36 and diagnosed two months ago with ibc. Tumour measured 8 x 9cm but after a change in diet and lots of veggie juicing, it measured 1.5 cm. Chemotherapy affects everyone differently and I agree with the whole constipation thing! Take the drugs they give you and as said be honest re how you are feeling as there are drugs for everything! Ibc is rare and aggressive but knowledge is everything and finding women in the same situation. It has taken me two months to read this forum but am so glad now that I have!

kate, was concerned about you, did you get in touch with your BCN?

Baldylou, welcome to the forum. Its good news about your lump shrinking, there was a lady posting on here a couple of days ago worried that she was having chemo before her op and she would have been very encouraged by your story.

You should introduce yourself on one of the chemo threads and there will be lots of ladies along having the same treatment as you. You are right is a wonderful site, keeps me sane when I am alone with my thoughts

Hi Jan & oldandlumpy,
Thanks for your concern and support.
I hope to have an appointment in the next 10 days.
Thanks again