I also posted this in the ‘worried’ part of the forum but have just noticed that there is a specific forum for IBC.
My name is Sophie, I am very scared at the moment and don’t know where to turn. I am worried that I may have IBC.
I had my baby girl 5 months ago. Towards the end of December I got what the doctors thought was mastitis (i’m breastfeeding). It partially went away with antibiotics but came back a couple of times. I ended up taking 3 courses of antibiotics. It cleared up mid January and hasn’t returned since then. However, I have noticed that the hair follicles/pores on my right breast seem larger/more noticeable than they were before in the area where the mastitis was. I have also been experiencing pain in my right breast, and sometimes in the underarm, shoulder and arm too.
I went to my GP who said it was just to do with breastfeeding and would not refer me to a breast specialist. I paid privately to see one a couple of months ago, he referred me for an Ultrasound which came back clear. However I am still very worried as I have now found out that IBC often does not show up on US.
I don’t know what to do next, I saw a different doctor at my GP surgery and they also refused to refer me on the NHS. I can’t afford to see another specialist for a 2nd opinion so it now feels like there is now no way that I can get this checked out.
Does this sound anything like IBC? I would be so grateful for any opinions/advice.

Dear Sophie, welcome to the BCC forums

I am sorry that you have this worry, please do call our helpliners in the morning to talk through your concerns, lines open at 9am (9-5 weekdays and 10-2 Sat)

Take care


Hi Sophie,

I am sorry you are so scared. I had IBC last year (showed up on US and MRI but not mammogram), but it’s not my place to say from your description whether or not it is IBC. Can you talk to another doctor at your surgery, or talk to your midwife? You could explain why you are so worried and perhaps ask them why they do not want to refer you.

Squeakymouse xx

Hi Sophie
I was DX with IBC in 2008. Nothing showed up on a mammogram but it did show up on US and then on an MRI. The symptoms which led me to the doctor were the affected breast became much larger than the other. It was very red and hot and there was a thickening rather than a lump. Try not to worry, if necessary take someone else with you to talk to the doctor who can put your case forward for further investigation from a more impartial point of view.

Hi Sophie,

I wonder why you specifically fear IBC rather than just fearing BC in general? Is there a history in your family or have you been doing the dreaded googling? If there is a family history then you def need to shout at your GP, complain and generally jump up and down until you get a referral. If you have googled up a self diagnosis then I still have sympathy. I am generally horrified at how many GP’s do not seem to think younger women can get BC and fob them off. The fact is, that without family history, it is very unlikely that you have BC and more likely that your GP is right. However, any changes in your breasts should be checked out. I can only second what Andie says - maybe take someone with you to advocate for you to try and get a referral to the breast clinic. No-one on a website like this (or any other) is going to be able to tell you whether you have cancer or not. You do need to give the googling a rest though (if that is what you have been doing) as it will not answer your questions but it will drive you potty.

I hope you find the answer or reassurance that you are seeking, let us know how you get on, x

Sophie you must go back to your Gp and ask for referal to breast clinic, the earlier this is sorted the better, IBC is tricky to Dx initially and biopsys sre usually the most reliable way.It did not show up on ultrasound or mammo for me.

Hi Sophie,
Sorry to hear you are so worried at the moment. Breasts go through so many changes that are harmless especially so soon after giving birth, and it probably is something harmless. But if you feel something is not right, if only to put your mind at rest I echo what other posters have put and insist on a referal and perhaps take someone with you. I had 2 visits to the breast unit only to be told everything was fine, nothing to worry about, clear mammo and clear ultrasound. Only it was not ! I was misdiagnosed ! Twice. Eventually I did get diagnosed my breast was hot, warm and shrunk in size. No family history and in my forties. So I always urge everyone with ANY changes to stamp their feet until you are taken seriously. Now this does not mean you have something to worry about because most changes are NOT cancer but thorough investigations must take place to rulke it out. Good luck and let us know what they say. Best wishes xx

Hi there, I am 48 years old and was diagnosed with IBC on Friday following biopsy on my breast and lymph nodes. I was overjoyed to see you post as I ave been googling and have read horror stories that have half frightened me to death. My left breast is affected and is really swollen (2 bra cup sizes larger than the other breast) and us really uncomfortable. The NHS have said I can’t get an appointment with the Oncologist for 2 weeks and so I am thinking of going private? They have advised me that I need chemo, then radical mxradiation therapy etc in that order. It would be really nice to chat with someone who has had IBC as no one else much seem to mention it.