we have not been staged yet (met with my team yesterday to discuss treatment plan and confirmed it was triple negative/ibc) and I am feeling so down. so scared. im terrified that it is going to be stage 4 because its been 2months since I first noticed symptoms. i wasted valuable time in the hospital where they treated me for mastitis and gave me antibiotics. got a CT scan there that showed no other involvement but scared 3 weeks has been enough time to spread. have my PET tuesday and panicking. what were your experiences before you got diagnosed? how long did you wait in between seeking medical help when you noticed changes in your breast? ive been eating ibuprofen every time the clock strikes 6 hours because ive read that can stop metastasis. feel like im going insane here.
sorry you find yourself here but glad you’ve reached out you’ll probably be going into outs space at the minute and googling like mad as suddenly you’ve found yourself with a breast cancer diagnosis and all these appointments and checks are happening and your not being told much please just try and take it one day at a time it’s such a lot to process you suddenly find yourself checked out of a plane with what feels like no parachute I was diagnosed tnbc in 2017 age 45, there were a lot of appointments and it felt like being on a conveyor belt with no control of anything, but as your treatment plan and treatments start you will settle into a routine and everyone here will help you as much or as little as you need, there’s also the bcn nurses on here you can ring and the someone like me option too others will jump on here and reach out too I had operation first (6 weeks after diagnosis) then 6 chemos, 15 rads and 5 booster rads. Your treatment will be tailored specifically for you do speak to your team too about how scared you are they are there to help you through each step of the way too they are there for you take it a day at a time and be kind to yourself once plans in place you will start to feel a bit more in control 
Shi xx
I know it’s hard not to worry. I also have Tnbc. I found the lump in early February and due to delays by the booking team did not see the consultant and get a diagnosis until mid March and my tumour had grown considerably in that time. I was worried that it would spread whilst I waited to start chemotherapy but he assured me another 3/4 week wait wouldn’t cause any issues. My tumour was 27mm when I started chemo, it was down to 9mm at the halfway point and when I had surgery it was 8mm. They removed some lymph nodes but they were clear. Trust your medical team - they will do the best for you and tailor a treatment plan just for. Please let us know how you get on, Emma
Sorry to hear you have just been diagnosed with IBC.
Avoid dr Google - it has lots of outdated and wrong information and once seen or read it is difficult to unsee it. Treatment options have improved lots over the past few years.
For IBC if no metastatic disease you will be considered stage 3 and the standard care is chemo then surgery and then radiotherapy. If stage 4 (mets) then different approach.
Check out the IBC network UK site which gives up to date info on IBC. They also have a forum for IBC patients on Facebook which is well moderated.
IBC is rare but there are other IBC patients here who can provide help and comfort.
Hope this helps
Oh ps I would not believe the ibuprofen angle - if it was only that simple that would be great.