I was diagnosed last week with IBC - two lumps in my breast and one under my arm.  I am due to go back on Monday [18th] to see both a surgeon and an oncologist.  If anyone has any suggestions of questions that I should be asking, pretty please let me know.  All and any advice would be gratefully received.  I am at the shell shocked stage and am not sure how I feel or what I should be doing.  Having read the odds, and Googled, oops, it isnt looking good.  Sarah in Wiltshire

Hi Maisie,

Sorry to hear you’re joining us. I did not have an IBC diagnosis, but hopefully, the others ladies will be along to share their experiences.

As it is rarer, this board does tend to be quieter, so if you want to, do go along to ‘recently diagnosed’ & the ‘going through treatment’ board when at that stage in treatment. Even though we have differing diagnoses, the treatments & the feelings we have when going through this are common to all of us. 

We’ve all been through those difficult early days with the shock of diagnosis, so what you’re feeling is quite normal

As you’ve found, there is a time & place for it, but Dr Google tends to make anxiety worse rather than reassure as there is a lot of out of date info there & much is not relevant to you specifically. I found it helpful to avoid google & rely on my team for info. The main BCC site here & Macmillan are good for information in a way which is not scary. There is also the helpline here if you need to talk things through. 

Do come & chat or vent whenever you need to & do look at the ‘recently diagnosed’ board, where you will be able to chat with others who are also going through the early days of diagnosis.


ann x

Hello Sarah,


I was diagnosed with IBC back in June and currently am having chemo. I do use google but you have to look carefully at the date something was published. Treatment for IBC has come on over recent years and if an article was published in e.g. 2002, it will be based on women treated 10 years before that, so not such a good guide for us today!


With regard to what to ask, I wanted to know the overall plan, with an idea of timescales. What chemo, etc., when I might have surgery. I wanted to know the pathology details, so whether it was hormone positive or HER2 positive. I think there is a leaflet here on the BC Care website that covers this and it is well worth a read.


Also worth thinking about is how you feel about clinical trials. Then if you want you can ask if there are any trials relevant to you. Not everyone likes the idea, but I am in a trial and very happy to be so. You can get an idea of what might be available on the CRUK website in their section on trials.


Hope it goes well on Monday and you get a good idea of your treatment plan.





Hi Maisie, Eliza and Ann have given you some very useful advice. I think some idea of treatment time line is good as you can get organised with work and domestic issues. There are great booklets on here about path results and questions to ask your oncologist, as well as booklets on how to tell the family if the news is BC. I found them really useful. At this stage you will feel shell shocked, and it takes time for the news to sink in. Once you have a plan in place you will feel more in control. I’m sending you a big hug, wishing you luck, and as we’ve all been there, done that and got bl**dy big t shirts we’ll help you all we can. ?  X