Being investigated for IBC - can anyone help ?

Hi everyone , I’ve been reading the forums for a week or so and finally decided to introduce myself. I’m in the middle of being tested for IBC and finding the process really tough going !! I’ve seen a breast surgeon , had a clinical exam and mammo, the mammo confirmed skin thickening and breast surgeon saw an irregular area which he thought looked abnormal. I’ve been back today for a targeted biopsy with ultrasound, but the radiologist couldn’t find the area the breast surgeon is worried about. She did say the skin looks thickened and visually the breast does look inflammatory. Saw the breast surgeon again who now wants to do an MRI , if this shows a definite area of concern they will aim a biopsy at it. If not , the surgeon will do a series of random core biopsies and also take a separate skin sample. I’ve done lots of reading about it ( and I’m a health professional in a similar field) so Ive been trying to keep calm , but I’m finding the waiting so hard. The surgeon did say today that he’s had cases where the mammo , ultrasound and MRI have all failed to find it and that it may be proving difficult in my case as I presented so quickly with my symptoms (now 4 weeks since first redness appeared). Has anyone else had a similar experience ??
Sorry it’s a bit long winded and thanks in advance for any advice !

Hi Mum and Gran

Welcome to the forums, I sounds like you’re having a pretty tough at the moment. I’m sure some of the other users will be along soon to offer you their support and experiences.

In the meantime it might help for you to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes Sam, BCC Facilitator

Hi mum and gran
So sorry you find yourself in this worrying situation. The unknown and waitining room is so tough. It may turn out to be nothing, hopefully. But at least your team are on the ball and doing everything possible to find it or rule it out. Which is a good thing because it is so hard to detect many get misdiagnosed. So should it be a positive diagnosis they have got it and can get treatment underway very quickly. Try not to google except the recommended sights as a lot of stuff is out of date. Try and keep busy ( I know easier said than done ). And post on here. xxx

Thanks Sassy1 x
I’ll be glad when tomorrow is over as its one step closer. I’ve had a nice trip out to Brighton today which helped stop me thinking about it all day. I’ve got my appt time for Monday with the surgeon and he’s hooping to have the MRI result by then , so he can plan biopsy. He said 2-3 g’day s for biopsy result so hoping to know one way or another by the weekend.
We probably have quite a bit in common as I’m originally from Yorkshire and 43 !
wishing you all the best xx

Im really glad you had a good day out in Brighton. If everything goes to plan you should have had your results this time next week. Hopefully it will be all clear and if so you know they have investigated in depth and you can be reasured its OK. And if not, you will be able to get on with the plan your team advise. At least everything is happening quickly. My mammagram was clear and ultrasound and was found by 2nd guided biopsy. I have everything crossed for you Mum and gran. Keep busy and feel free to pm me or post on here if you have any questions. xxx

Frustrated beyond belief ! Should have had MRI this morning and was on table with needle in ready to go and it broke down !!! Won’t be fixed till Monday lunchtime , scan rearranged, but results won’t be ready now for planned biopsy Monday evening. Which means no biopsy till at least weds next week and no results till after Easter weekend. Was so hoping to have a result by Thursday next week. Don’t know how I’m going to manage for another 10 days or so :frowning: in the meantime my breast is turning an awful shade of purple/blue. I know nothing can speed up the process and everyone’s doing their best, but it just doesn’t feel good enough…feel like I need a massive tantrum !

Oh Mum and gran how awful . Especially meaning the results are now going to be after Easter, which I imagine you feel is ages away. You rant away and have a tantrum ! xx

Well had MRI on Monday and was called back for a 2nd ultrasound yesterday - the MRI showed an irregular area behind the nipple and the right breast "lit up " more than the left with contrast injection. Radiologist again couldn’t find the area to target for biopsy - he started saying this is a good thing , then admitted it doesn’t always show on scans and is more of a clinical than an imaging diagnosis. I then saw the breast surgeon , who took 5 core biopsies and a piece of skin. He was also trying to be reassuring , saying the cases he’s seen have looked angrier and redder than mine , but was then telling me he struggled to get through the skin where it was thickened ! I have an appt next weds to have stitch removed , if results are back before then he will call me. He’s already said if the results are clear he will still want to see me again for another MRI in 6 months time. So if this round is clear I still won’t feel reassured :frowning:
has anyone been in a similar situation ? Sassy1 I know you said your IBC was found on a second biopsy , was this a delayed biopsy or straight after the results of your first one ? I’m hardly sleeping and now even more worried that this will drag on and could be hanging over me for many more months, I’ve even been thinking I’d rather get a diagnosis of IBC now than live with the uncertainty, which I know is ridiculous , I’ve lost all my reason !!!

Oh what a position your in, no wonder you are feeling upset, because uncertainty is what sends our minds reeling ! Sending you big hugs. Your team are doing all they can by the sound of it. And to give another check 6 months on is excellent, although I know this makes you feel worse. At least they are being extremely thorough. Not only myself but lots of other younger women are misdiagnosed as the breast tissue is too dense to show up anything on mammogram, not only for ibc. My skin was not thickened just red, but the tissue inside was quite thick. My breast also shrunk in size which is rare as mostly it increases in size. I initially had a skin biopsy and core biopsy, this did not show anything. So when I went for my results I had to have the further biopsy that resulted in the diagnosis. The waiting is very stressful. Hang in there Mum and gran, it still could be something completely harmless. x

Hi Mum and Gran

I went for 9 weeks in 2008 after finding a hardened area in my right breast, before I was actually dx eventually by a thorough biopsy (opening up the breast to remove tissue).

In all this time I had been misdx, had mammograms, ulltrasounds and when I started bleeding from the nipple a biopsy of this blood was taken, all coming back clear. I know now that this was not a true way of testing for IBC. My breast practically doubled in size, was red, itchy and felt pretty uncomfortable, almost like the feeling when you need to breast feed a baby.

Once cancer was dx I had 6 rounds of chemo, then a mx, radiotherapy and 2 years later a reconstruction.

All is ok now and tomorrow I am having the final stage of recon, a nipple and a tatoo - so excited!

Good luck with all what is going on for you, feel free to PM me if you want more help or to talk to someone.


Thanks so much Peacock and Sassy1, it’s so helpful to hear from people who understand the difficulties of diagnosing this particular form of breast cancer. I have my appt this afternoon for the stitch removing and fingers crossed the biopsy results should be ready too. The surgeon tried his best to get them done the day after bx , which would have been Thursday last week, but I always thought that was a long shot. My biggest fear today is an inconclusive or negative result, as I can’t understand the rationale of seeing me in 6 months for another MRI, which couldn’t exclude it this time anyway !! Surely I would need further biopsies rather than more imaging ? and would prefer a shorter interval between them too :frowning:
will have to speak to my surgeon if this is the case and get him to either convince me of his reasoning or change his mind ! At least a definite result today would mean treatment could be started, as the delay worries me more :frowning:
My breast was originally noticeably bigger than the other one , now it seems a bit shrunken. The redness has stayed the same and there is obviously still fluid in the skin as when I took the plaster off last night to investigate the biopsy site , the little square of gauze on the inside of the plaster has left a deep indent in the skin of my breast.
My other half has been fantastic , trying to calm me down and reassure me , but I don’t think even he could cope with another 6 months of this hanging over us.
Ill let you both know once I’ve had my appt today , wish it was this morning but I’ve got to wait till 4.40 pm , still, it’s been 16 days since my first appt at breast clinic so I suppose a few more hours should be manageable.
take care and thanks again for your support and kind words xx good luck for your tattoo today Peacock xx

Just an update , I’ve been for results and no atypical or malignant chages , just non specific inflammatory changes . I’ve just got to keep an eye on it and see him again in 3 months to make sure it’s all resolved itself. the surgeon has managed to convince me nothing more needs doing at this stage so I’m feeling very relieved

Thats brilliant news. I am so pleased for you, it sounds like they have been quite thorough so please be reassured and don’t let it rule your thoughts. It’s always great to hear good results. You have been through the mill this last week or more ! At least they are also keeping an eye you. Best wishes Mum and gran xxx

Thanks so much xx ive just had a glass of something fizzy and a huge bar of chocolate

You deserve it…enjoy x

Hi everyone my name is Jane and i was dx March27th with IBC.Am having MRI and CT scans tomorrow.I didn’t receive these appointments until 8 days later.I had a bit of a meltdown at work because of this -feeling scared of the unknown and fed up of checking the phone and the mail everyday.My life feels in limbo as i still don’t really know what i am fighting.Found the appointments when i got home last thursday and now feel happier that i am moving forward.
I am 48 and never smoked and barely drink.I am peri-menapausal and fit and healthy.I work full-time doing a job i love.
Feel a little worried about tomorrow but really need to know whats what and get cracking with my chemo and Mx.
Not sure if its worth asking any more questions until i get my scan results which according to the paperwork take 2 weeks.I have just received appointment at breast clinic for next week so hoping its only 1 week of waiting.
Fingers crossed

Jane I am sorry you find yourself here , once you get a treatment plan things do get easier, I am 2 years since Dx, I was stage 4 from beginning but my treatment worked very well and I am currently NED , I felt just as you did at the start , it’s very normal , Really hope your appointments go well and you come out feeling a little more re assured.
I will send you a private message.
Jean x

Hi there,
i discovered a lump in my breast in March of this year and when to GP. I was referred for check up with BC specialist and she found the lump but said she was also worried about the swelling and rash that had appeared. I had a biopsy that day on my breast and on the lymph nodes that were swollen under my arm. They came back positive Grade 4 but the specialist said she was most worried as it had been biopsied as invasive ductal but that there were clear signs of IBC and so I was going to have chemo first before radical Mx (they are not checking after 3 months they are just going ahead because they are so worried about the IBC. I have been waiting for appointment with Oncologist but he only works one day a week so I’m not likely to see him for 2 weeks. I feel distraught. I don’t know why I am putting all this on here but I just feel like no one understands. Sorry. Just feeling really sorry for myself…