One of the reasons IBC is often mis-diagnosed is that it tends not to show up in a mammogram. The radiographer who did my mammo told me in her opinion I had mastitis. Thankfully I ignored her. I saw her again earlier this month for a routine mammo on the breast I have left. She did remember me, and her crass unwelcome comment, and we had a frank exchange of views. You're absolutely right not to give in. It's also rare, so that GPs can go a whole career without ever coming across a single case. Not surprising they don't recognise the symptoms but no comfort to us.
At the very least you should be referred to a breast clinic to be examined by an experienced consultant. Mine was picked up on an ultrasound which as you probably know only takes a few minutes to do. I would ask for a second opinion if there's another GP you can see, even within the same practice. It might be worth looking out some literature on IBC to take to your GP. BCC helpline will point you to the good stuff.
Hope this helps, Jan xx
I just booked my own appointment privately as I'd been misdiagnosed for so long (kept being put on antibiotics to see if the inflammation would go down...but it kept getting bigger). To be honest, by that point I would have paid if I'd had to as I was making myelf ill from worrying so much and tired of being dismissed, so I just went for it. But completely realise that that shouldn't be the case.
And Jimmel, of course you're going to be emotional if you're scared that it's cancer - it is a HUGELY emotional issue - and that's just going to get worse if they don't test you and either put your mind at ease or diagnose you and start treating you. The worst I've felt (so far) is during that waiting period and I have met one other girl who had a nervous breakdown during the diagnosis period as she kept getting sent away.
I would be interested to know who is managing to get self-referred unless, of course, they are over age 70 - I think it may be age 73 but I would need to check this. This is definitely not the case in Scotland because I tried it. I was refused twice. I also tried going into the Screening Mobile Unit (was refused because I was not age 50 and therefore not in the system) and going private. I was told by the Ross Hall Private Hospital, Glasgow that I could not be seen privately without a GP referral letter in the first instance. I made the mistake of not taking it further. I'm asking this question because I have always been concerned that the standard of care varies throughout the country and am wondering which areas are able to self-refer. The idea of self-referral is one that I would very much like to see - particularly for those of us who are under age 50 and fail to get passed the GP. I have brought this to the attention of many of the BC charities. They have all said it is not something they can take forward.
somebody on another thread said that you can self refer to a breast clinic. Apparantly you just go in and you can arrange an appointment. It cannot be an urgent one, but at least it would be checked by experts within 6 weeks.
Welcome to the BCC discussion forums, you've come to the right place for some good support.
Could I suggest you give the helpline here a ring and have a chat with them about your way forward with this. The helpline is open again tomorrow morning at 9am until 5pm (Mon-Fri 9-5 & Sat 9-2) Calls are free 0808 800 6000
My advice would be to fight on in whatever way you feel best suits your situation. Going down another channel for a second opinion may be another idea. Don't allow the emotional issue to raise its ugly head again - some are good at that. Although I know through my own experience that a second opinion is not always possible - I lived in rural Scotland at the time and no other GP practice would take me on. Said I was outwith their geographical boundary. I'm a four years misdiagnosed lobular lady who got fobbed off for years being told I had nothing to worry about. I've been campaigning for the last four years for better recognition of lobular and IBC. They are not well represented in the Guidelines therefore some medical professionals don't appear to take much notice. They should be listening to their patients and not taking risks with our lives. You go for it.
Hi I'm a RN so I though I could present my problem to the docs professionally. So we have one breast that has enlarged by a cup size,gets rashy, hurts increasingly more every day itches some days it's bright red has confirmed by mammo asymmetrical thickening nodes at clavicle are tender normal white cell count past menopause never been on ERT Doc s nurse says mammo not alarming so there is nothing going on and doc tells me I have rheumatoid arthritis of the breast.Mind you no RA symptoms ever just this sudden breast thing I'm fighting for a MRI but he feels it's become an emotional issue Help, how did you guys get someone to look and listen?