27 inflammatory breast cancer

Hi Pinkygirly

Welcome to the forum and I am sorry to hear that you have been diagnosed with IBC.  While I'm not in the age bracket you are looking for I noticed that you haven't had any answers yet so I thought I'd reply to you to welcome you to the community.  This reply will also move you to the top of the discussion.  Hopefully someone will be along shortly with an answer for you.

Best wishes

Daisy53

Just bumping you up again in the hope you get relevant responses.  Love from Ann

Hi pinky girl, I am not in your age bracket but I was diagnosed in February 2022 with IBC. I was triple positive so had the chemo, mastectomy and radiation. I’m 18months down the line and I have just had scar revision and reduction of the other breast as I suffered with many seromas after the mastectomy. Have you joined the IBC group on Facebook you will find lots of information especially from Caroline sands and there is guidance for the international protocols for IBC. There is a lot of out of date info on Google and it can really scare you but treatments are more targeted now and there are many success stories. We are a rare bunch with only 2%~4% of breast cancer being IBC. When I was diagnosed there were only a handful of people on this site but finding the fb page really gave me a lot of info. If you have any questions and I can help let me know hun. Jxxx

Hi Jan, how are you doing? Sorry to jump on this. 

I found a lump on Sunday and had an ultrasound and biopsy Monday for the lump, on Wednesday morning I had a rash appear on the biopsy boob, on my chest a little and a little on my other breast. I googled rash after biopsy and IBC came up which as sent my anxiety rocketing I saw the breast nurse today who confirmed no infection but is not sure what is causing the rash. She said maybe a reaction from something used for biopsy, although odd it’s spread outside of where I had the biopsy. Looking online is such scary reading for IBC. Not sure the point of this post but thank you for reading my rambling xx 

Hi knicnic I don't mind at all. I can understand your panic especially when you found redness. My redness was there before the biopsy and the dressings afterwards made it worse an it seems i'm allergic to the tape. With ibc it is about 2-4% of all breast cancers that is found to be ibc. I know everyone is different but but my symptoms came on really quickly within 12 weeks and my breast got bigger very quickly and had orange peel skin that felt really thick and papery and an inverted nipple. Mine was also invasive lobular cancer which meant there were no lumps either. If you have ibc Hun you can let me know and I will be here to talk. Just remember hun statistics are changing all the time and there is always hope. If you can use well known sites that will give you the right info, Macmillan , breast cancer now. There are better treatments nowadays hun. I'm here hun. Jxxx < < <3

Thank you so much for reply I really do appreciate it

When I went Monday the dr checked the appearance of my breasts and had no concerns other than the solid lump, so I’m worried that this is ibc because of the rash- the breast nurse thinks a reactionbut I don’t  I also know that no imaging other than mri would definitely pick it up. I really have got myself in quite the state xx 

Hi hun you can have invasive ductal which grows in to lumps and forms in the ducts and lobular which forms in the lobules which grows in sheets which aren't easily picked up with mammograms and mri and ultrasound along with other symptoms which have appeared within 3-6 months. I can understand how worried you are feeling and If things don't improve speak to your breast cancer nurse and tell her your worries . When will you get your results back from your biopsies? It seems like you have been seen really quickly but until you have your results and a plan you are in limbo hun. Please let me know how you get on. Jxxx <3

I have a follow up appointment the week after next, although the nurse did say she may be in touch if they’re in sooner. I find myself obsessively checking the rash and asking my hubby to do the same! I was anxious enough about the lump, how the rash has sent it through the roof. 

How are you doing with your journey? Thank you so much for being so lovely 

Hi hun I would like to give you some hope for your journey and I know you are just at the beginning of yours. I am just  6 days from 2 years post mastectomy and When you are diagnosed it is already at stage 3 and either grade 2 or 3 with some lymph nodes involved. A diagnosis of ibc is very frightening and when i first realised that this was what I had the information available wasn't great and when I came on here at that point there hadn't been many posts that were under 2 years old and I felt very alone. I met another lovely lady 6 months later was in the same position and she reached out to me and we have kept in contact with each other. For now we are both well and hopefully looking for many more years.For now until you get your results hun just breathe. Let your mind catch up with the panic and anxiety that you are feeling. Take a few days to do something that you like to do and I really do hope it isn't ibc but there are new treatments and more complete response to treatment. There is a fantastic site called the ibc network.uk where you will be able to get great support and information and if it is ibc there are international protocols that should be followed. Advocate for yourself hun as some doctors never come across a case in their lifetime. Will you let me know what your results are hun? Jxxx <3

Hi, it's nice to see how supportive people are on here, I am on chemo treatment for breast cancer and feeling like crap. Bless everyone for supporting and helping others get though these hard times.