I’ve said before on BCC, but will say again for the newbies, although I live in France so things may be different for me I think generally the treatment is probably the same with chemo first, then MX, rads and hormone or herceptin for 5/1 year.
My team told me this time last year that these days, with all the new types of treatments (as mine) having IBC is not more serious than any other type of cancer and the internet is very out of date.
20 years ago this wasn’t how they treated us, so statistics are still quite poor and its about time some new statistics were published.
Anyway, I just wanted to try and reassure, especially those newly diagnosed.
Resurrecting this thread as I was just told today that my cancer is inflammatory breast cancer. Good to read this encouraging posts on here, just what I need to pick me up again.
Hi Christine, sorry to hear of your DX with IBC, I was Dx just over a year ago, but after treatment I am feeling better, even though I am stage 4 with Lung mets I am currently as good as NED,
Please PM me if you need any help with anything, there are a few of us IBC ladies on here, all here for you to hold your hand and give you support, Sending you a big friendly HUG ,
Jean xx
hi
i dont have ibc but a i do know a friends of mine that had a 10.5 cm tumour and had to have chemo for 4 months before surgery could be done 11 years later she is brilliant she now spends most of her spare timie raising money for break through breast cancer
just a real story to spurr you ladies on
take care liz
I was very nervous about opening this thread, but was glad to see it is a positive one, THANK YOU!! My chemo starts on Wednesday and I really only want to think about positives right now, as the nurse scared the living daylights out of me with all the things that could happen during chemo. Nevermind Hammer Time, this is Positive Time!!
Hi ladies, I was dx with BC in November and was only informed last week that it was possibly IBC. I have tried not to google (unsuccessfully) lol but found this thread very helpful.
I wasn’t told that it was IBC till a few months after the initial DX. Everything I read about IBC on here sounded just like my breast was looking like at DX and I wondered if it was IBC although not being told, but when I saw my BS after my 5th chemo (one month before the MX) I asked him if it was IBC and he said yes. I have heard from other woman the same, that they were not told right from the start. Don’t know why to be honest.
Hi Peacock and Everyone, I’m in France too, and after a biopsy a week later I was in front of the Oncologist who told me it was IBC. He said it was in a very early stage and that it hadn’t spread into my Lymph nodes, and after two Scans it isn’t in my bones or in my liver or lungs, so something to hold on to. He told me not to Google it and that now it is treated exactly like any breast cancer. Gives me a lot of hope to read of survival rates of 10 years and going strong. I did what I suspect everyone does and Googled it and by the time I’d finished I was wondering if I’d get to finish the book I was reading, so googling no more. So glad I found this website. A tough journey we’re all on, but fabulous to meet other IBC girls, going into my second FEC100 Chemo session next week. Hair cut very short and feeling like a brillo pad, but don’t care. fingers crossed for all of us.
Hi Lynsey - don’t be too daunted by what you read on line it’s mainly out of date information. The prognosis has changed hugely over the past two years mainly because various forums and websites are now dedicated to getting the information out there. The main problem and reason for the high mortality rate in the past has been due to the lack of a clear diagnosis until the disease had spread. This thankfully is changing. You’re not on your own. I was diagnosed in January 2013 and am about to have my second Chemo tomorrow. I feel good and positive and can already see the difference it’s making to me. So chin up. And good luck with your treatment. Pat (Korkys Mum)
To all you lovely ladies going through the trauma of IBC. I was diagnosed in 2005 with IBC aged 46 which had spread to lymph nodes with possible liver mets. Whilst I know everyone’s story is their own, it is important to hear about the good news too. I am currently 8 years clear though continue to take tamoxifen. Please try not to panic it doesn’t always mean death at diagnosis and PLEASE don’t bother googling, that way lies madness.
Hope this doesn’t sound smug just wanted to she’d some positive light.
Love this post! I was diagnosed Friday With IBC. I really am determined to give this disease the biggest battle and hope one day to put on here the same post as yours. Thanks for brightening my day.
Hi there, I just wanted to make contact. I have been diagnosed with IBC after IDC was diagnosed in my left breast. The IBC is swelling fast and is scary. I do know it has gone into my lymph nodes but don’t know if it has metastasised or where yet. I feel absolutely distraught today and am waiting for a meeting with the Oncologist which I have been told will be another two weeks! It is lovely to hear success stories anyway and I am so grateful for this site and the time people like you have taken to add encouragement at the darkest point of my life. Thank you.
Hi Katherine2701, the initial diagnosis is one of the hardest stages to cope with, but cope you will. Then you get on the treadmill of treatment and that quickly sort of becomes routine. I found it helped me to keep working right through, I’m a secretary, it helped normalise things for me, and stopped me brooding. To be honest I didn’t feel ill most of the time, I know everyone is different though.
like you my breast seemed to be growing daily BUT when I started treatment I could see it visibly shrinking. I was told by my oncologist that this type of cancer reacts well to chemo.
I won’t say keep positive for some reason that never sat well with me, we’re all positive we want to survive, does that mean if we aren’t perky enough we won’t !!!
Will be thinking of you all, two fingers to cancer I say !!!
One year ago today I was dx with IBC - 80mm x 60mm HER2+ ER- PR- with spread to lymph nodes but no mets. One year ago I did not think I would be here to write this post today but I made it! I had a complete response to chemo (they found no live cancer cells after op, just the remains of dead ones).
Hope these posts here give some hope to people just starting out on this journey
Hi Katherine
I’m not an IBC lady but just wanted to say firstly that I’m sorry to hear about your diagnosis and secondly - can you try and push for an earlier appointment with the oncologist? I seem to recall that when I was diagnosed with IDC, I saw the oncologist almost immediately as they wanted me to start treatment asap. Just hearing that you have to wait for 2 weeks prompted me to suggest that you see if your appointment can be brought forward.
Hugs
Ruby
st over 1year post treatment for IBC with lymph node spread. Can anyone point me in the right direction regarding SSRI’S? Currently taking Tamoxifen, but I really need an antidepressant, despite all the wonderful, positive, encouraging comments from fellow IBC peeps. My Oncologist had said the data regarding the efficacy interactions was inconclusive and that very little Pharms affect the potency of Tamoxifen. Tried Fluoxetine with no change to my mood. I was hoping to try Wellbrutin, but am afraid it may affect the efficacy of my Tamoxifen. I was diagnosed 2 years ago.