Found out I have inflammatory breast cancer

Hi, hold tight take a deep breath and breathe. Not had it excluded yet myself,  all I know is my symptoms stop when I’m on antibiotics and my symptoms came on quickly. Hoping to get answers next Tuesday. Currently it’s 23 days since I had a mastectomy and still don’t know a treatment plan other than the mastectomy. Hopefully they’ve diagnosed you quickly what have they told you are your next steps 

Thank you  they want to start chemo first then do a mastectomy I will know Monday week what stage the cancer is. I hope you heal well. 

I’ve just found out the same but with lobular triple negative as well.  Sending love and hugs - there’s so much out there to help us now.  I’m trying to focus on what I can control and leaving it to the doctors as much as I can, they’re the experts. Online and phone support helps too. Do post on here when you know more.  I’ve got CT and MRI scans then oncology, I’m expecting chemotherapy first then mastectomy and lymph node clearance and possible radiotherapy. 

I feel for you all, I really do. When I was first examined, they suspected IBC, but scans /biopsies revealed that it wasn’t, although it sure did look like it.   Forestrambler, that sounds like a heck of a lot to process mentally. M6 treatment plan was exactly what you expect, and in the same order too. I had a mixed tumour and didn’t find out until after the pathology report post mastectomy. I didn’t know about the lobular bit. At the beginning I got a lot of support from the MacMillan helpline, who always seemed to be able to separate the emotional stuff for me from the clinical stuff. Xx

Hi I will know what stage I am at Monday week. Thank you for replying and I hope you get all the help you need. I will let you know more when I find out. 

Yes keep in touch. Good luck to us both next week. Can I ask what symptoms you were experiencing?

Do you have any hormone reports back?

No nothing back yet. I had swelling under my arm and pain then my breast started to go red xx 

Hi Tina , I was diagnosed with ibc in February this year, it is a really scary time. Usually when IBC is diagnosed you are at stage 3  but tests like biopsies will tell you the grade and there are 3 grades. Treatment is usually always chemo first and depending if it is hormone receptor positive and her 2 positive or if they are all negative what targeted therapy is given. Because IBC affects the skin also it will probably be a mastectomy too  and no reconstruction for at least a year. You will probably also have an mri a ct or pet scan to see if it has spread anywhere else. I was stage 3c with grade 2 triple positive and i have had chemo and a mastectomy this week, just waiting on pathology and what treatment i will have next. I have joined the uk IBC group through fb and they have a lot of information and international standards that your health board should follow. There are only around 2% of breast cancers that are Ibc. Wait until you have a plan and take each day as it comes. Janexxx

Thank you can I ask what age you are and how was the chemo x

Hi Tina, I also have IBC and was diagnosed last September. I'd strongly advise you to join the IBC Support Group UK on Facebook. You'll get through the next few months a lot better knowing some of the ladies going through the same. There is also plenty of important advice given by medical professionals associated with the group. 

Feel free to reach out to me if you want. 

Big hug from my side. I know this time is really hard just after diagnosis.

Lorna