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Hi Foxylady welcome to the forum. 95% seems a huge degree of certainty in the big scheme of things. Do you have a plan for treatment as yet as that can sometimes give us something to focus on, to get through and to get ourselves well again. Its ok to be scared, we all go through that, the waiting is the pits and nothing seems to make time go quicker except keeping ourselves busy.  Keep talking though as people on here will come back to you and can relate to how your feeling and what is happening for you just now so you are not alone.

It's normal to be scared and panic, I even felt like I had ringing in my ears as if my brain what trying to stop me hearing what I was being told, but even if the worst becomes real you can get through it. After 18 months I'm just finishing my treatment for IBC and spent today raising awareness at the local hospital with the amazing breast care team. Sometimes treatment was a breeze, especially early on, sometimes it was absolutely brutal, but all doable and definately worth it. Wishing you all the very best of luck xx

Hi Granny59

Thank you so much for coming back to me.  I will get my treatment plan on Friday, assuming they were right.  I’m doing my best to keep busy. I feel that once they tell me what the plan is I will have something to focus on.  I am full of bravado showing my positive face but underneath I am drowning

Good morning Lulubelle1

Good to hear from someone who is recovering.  Can you tell me if you had the chemo first.  It seems to me that they don’t know as much about this type.  The hospital said I should have chemo first but there is quite a delay at our hospital and therefore they would want to do mastectomy so there is no delay.  I have read that this is the wrong thing to do.  I know I’m in their hands but don’t want to jeopardise the treatment.  Thank you for raising awareness, I think there needs to be more information out there on this type of cancer.  Wishing you a successful and speedy recovery

Hi foxy lady

very sorry to hear you have just been diagnosed with IBC. 
My diagnosis with IBC was over 10 years ago. I had chemo then mastectomy and then radiotherapy. 
just a bit of info: 
Yes typically with IBC if it has not spread you should have chemo first, then mastectomy and then radiotherapy. 
where are you based? 
Birmingham hospital has a team specialising in IBC. They can give second opinions. 
There is also a Uk based IBC Support Network which may be helpful. They have details of an IBC international protocol giving guidelines for treatment of IBC. 
Be careful with dr Google as there is a lot of outdated and unfriendly and wrong info on the internet. 

Hope you get a plan soon and can start chemo. 
And do nice things to keep you busy

warmest wishes

Hiya, I had 5 months of chemo, then 6 weeks later I had a full left mastectomy and a right reduction then 2 months after that I had 3 weeks of radiotherapy. After my first round of chemo I started on Herceptin and had that injected every 3 weeks for a year which finished this August, 3 weeks later I had a diep flap reconstruction and this week I have started on Zoledronic Acid Infusions which is an anti cancer therapy that I will have every 6 months for three years....... I think IBC is a bit of a long haul as far as different brest cancers go, but I think there are guide lines that have to be adhered in terms of time from confirmation of diagnosing to chemo starting so if it is confirmed I know your brain will be awash with everything but please don't be afraid to assert yourself and question your local authorities NHS official waiting days, mine was 28 days from diagnosis and I queried it when chemo was not due to start for 35 days and then it was bumped.to start after 25 days. I know IBC only counts for 1 percent of all brest cancers and my oncologist had never treated anyone at my hospital for it before.  When I had my first appointment to go through everything re treatment plan, my daughter came and took notes which proved really helpful as it is too much to take in, and Macmillan have an IBC booklet if you haven't already been given it. Everyone is different and you have to choose you own pace, for me I needed to know what was happening when and why and how the drugs worked (just keep me a little bit of control) and I know that you have to trust what you are being told but never be afraid to question if you think something isn't as it should be, and you are entitled to a second opinion if you want one. Please keep positive xx

Hi Lulubelle

Thank you so much for the long and detailed reply. That was so informative and helpful.  
like you I need to keep some control.

I am taking my daughter and my husband with me on Friday.  She has done quite a lot of research and will fight my corner if I can’t. 

it is so inspiring to hear from people who have been along this long road. I’m not going to lie, I am terrified of what lies ahead but at least I know you guys have done it and are living to tell the tale.  
Take care

Debbie

Hi Caroline

Good to hear from you.  
10 years is a long time and gives me great hope.  
my daughter told me about the IBC unit In Birmingham, did you go there?  I am based in Norwich.  She also mentioned the IBC protocol so I hope when I go for my follow up Friday to be a little ahead of the game.

my plan is to live life to the full whilst still trying to do as I’m told. The later is not easy for me.  At the moment my moods are very up and down so I’m trying to keep busy till Friday.

Take care x

Hi foxy lady

good to hear your daughter and husband are with you on the case ! They can do the note writing for you too. To keep a record is good. It can be hard to take everything said at appointments in. 
I wasn’t at Birmingham, I think they didn’t have this team when I had my treatment, but I think my local hospital were well informed happily. 
I am surprised Norwich hasn’t seen a case of IBC before. It’s a big hospital. 
keep busy and where possible get some fresh air too :-) 

hug

Ah sorry , just misread this… they have treated patients in Norwich with IBC in the last few years, so they have experience. :-)