Anyone have negative imaging, but have Inflammatory Breast Cancer?

@kaforester3 For a breast MRI you are lying on your stomach with your upper body elevated. Most of your weight is on your upper abdomen. Your breasts are hanging down in an empty space. As I recall there was no breast compression but there was something around my breasts. Your face is in one of those padded holes like you see on a massage table. Your arms are above your head. It's not horrible but not comfortable either. I don't think I was in that position for more than 30 minutes. I took ibuprofen beforehand because I have back problems. I took a sedative, which didn't knock me out but at least kept me from panicking. I kept my eyes closed from the moment I got into that position until I was all the way out of the MRI. If you've never had a MRI before I will warn you that it's a fairly small tube and it makes a lot of different loud noises. They can give you headphones to listen to music. The tech will talk you through it step by step. I just counted my breaths and reminded myself that the test was for my own good. Oh, I would imagine they are doing the MRI with contrast, you will have an IV if that is the case. If one has an MRINguided biopsy then the procedure is a bit different.

@babs28 ok. Thank you for all this information. It will help me tremendously tomorrow.

You need to take imediate action to resolve this.Because the disease blocks lymph vessels in the skin rather than forming a distinct lump. Treatment follows a strict sequence of systemic therapy, surgery, and radiation overseen by an oncology team.

@kaforester3
Were you ok in the MRI machine? Praying you have good results.

@kaforester3, any update on further testing? How are you doing?

Yes, call you oncology care team ASAP.

Get a verified diagnosis. Don’t assume something that will make you go crazy.

I had developed a rash following a seroma deep in my chest after my lumpectomy.

My breast was cut open and left to hang open so it could drain. (It never was sewn back closed, so I have a hole where it should be a nice little scar).

The fluid was almost done draining when radiation began. And that set off a terrible, painful rash and frightening episode in my treatment.

It was during Covid and contact with my health team was limited. The rash continued for two months following the end of radiation. Each doctor passed me on to the next and never addressed the issue.

It was at my annual ob/gyn appointment that I finally got someone to listen to me. She sent me immediately that day to radiology and the doctor there was very grave and said he suspected IBC.

With that diagnosis, the wheels of the medical team turned quickly. In less than 20 minutes, I was seen by my oncologist.

He had to nerve to ask me why I hadn’t contacted him sooner!!!!! He looked at my enraged breast and diagnosed cellulitis. I was given instructions to leave the breast open to air and let it breathe.

That was in January.

It never did go away fully. It was an ER doctor in March, who looked at it. Left the room for 30 minutes. Came back and gave me his personal phone number and a topical steroid prescription. He told me if it wasn’t better in FOUR DAYS to contact him directly!

It healed up in two days. But I had suffered through thinking I had IBC for five months and having a persistent rash because not one of my team doctors would accept responsibility for mistakes they had made OR dealing with a patient who had an unexpected reaction to therapy. They didn’t know how to treat me and passed me onto another team member.

It was scary and frustrating.

For an MRI, yes, you lay on your stomach and your breasts drop down through a space where they are viewed. Also, they give you a contrast IV and it lasts about 30-45 minutes. I have to have an MRI once a year for diagnostic purposes for cancer that did not show up on a mammogram.

It helps to think about other things while it’s going on. I memorized all the presidents of the United States and a fact about each one. I usually get to Herbert Hoover before it is over. Silly thing, but it helps take one’s mind off of the procedure.

@beyourownadvocate :

I am so sorry for what you've been suffering through! How could any healthcare professionals leave their patients hanging to dry like these??!! Where are their vows of " Do no harm"?

My heart simply aches upon reading your post... Wishing you a better journey ahead, my friend!

Luckily, we moved to another town. I shoes my new oncologist my breasts after the draining and the rash.
I asked if that was normal. She said NO.
I have had wonderful care ever since.
Understand this - if you are not getting help during your treatment, find another doctor be it a gp, ob/gyn or anyone specialist. You don’t have to suffer from inadequate care.

A mri will show more