What should my next step be?

Hi Worried-

First, we want to welcome you to our community here at BCO. We hope you find it to be a supportive, informative place!

IBC is very rare, making up only between 1-5% of all breast cancers. Given your age, and how rare it is, it's unlikely that what you're describing is IBC. Also, IBC is incredibly aggressive and symptoms show up and advance very quickly, so if the darkening was noticeable as far back as a year and hasn't gotten worse, it's not an indicator of IBC. That being said, there does appear to be something going on, a particularly stubborn infection maybe, and any changes to your breast health (or health in general) need to be taken very seriously. We're so glad you've already discussed this with your OBGYN, and it's good that you're seeing a breast specialist. Using the ultrasound results and after the exam, the breast specialist should be able to determine what your next course of action should be.

Please keep us posted on how your appointment goes, we'll be thinking of you!

I first noticed my IBC as my nipple turned a bit "green" and was the texture of an orange. My right breast was bigger, heavier and warmer than the other breast, and behind the nipple it was a bit of a "gooey" play dough type texture where on my left it was not. It is likely you don't have IBC, and if the ultrasound found nothing I guess you could ask for biopsy of your skin to be put at ease.

worried.....just relax. You will get answers. Even if you hear bad news, that you have cancer, it is not a death sentence. We all here on BCO are proof of that! You have a small little bundle of love who needs you now, not in a pile of worry and anxiety. Take a deep breath. Being a mom is the best distraction I can think of to the worry and waiting. The waiting is by far the hardest part. As our Mods have said, IBC is very rare, so chances are in your favor that the pain you are describing is related to breastfeeding or something else. My boob was painful but not severely so as you are describing. I think you are working yourself up in fear....and that wont help one bit. Please let us know what you find out, in the meantime relax and enjoy your family. Thats always good medicine.

The pain did not prompt me to go to the doctor. I just didnt think it was bad, but looking back I know now I should have been checked. I first noticed an itchy breast, super itchy it would wake me up at night. It started being painful when I was mowing the yard on the riding lawnmower....the jiggle was painful enough that I would hold onto it when I went over bumpy parts of my yard. Then I noticed that when I was holding my 4 year old granddaughter on my lap and she would elbow me moving around, that too was painful, like mastitis. I started having a full breast feeling all the time, like when I was breasting (20 years ago) and was engorged with milk. But I thought it was hormonal changes, as I am in my mid fifties. I started having skin changes around my nipple, the classic peau de orange skin, and my nipple slightly started to withdraw inward. I never had a lump...we are taught to feel for that lump. I had never heard of IBC, and I did not know that cancer could present in sheets like cotton candy, and so I waited thru the painful time, but went in immediately,when the skin changes started. So it wasnt painful enough to make me think it was anything serious, like I said, I assumed it was hormonal.

IBC is a rapidly advancing cancer, and if you have been watching symptoms for a year I would be extremely shocked to learn it is IBC. A 2 month window is the norm for diagnosing IBC, if you are diagnosed outside that window then you are outside the norm....it mimics other things but the changes are so fast and aggressive that you KNOW something is happening. as I did when I went from this painful boob to the skin changes, literally overnight. Someone who had IBC for over a year and was untreated, well, would be in very advanced stages, not still wondering whats happening as you are now. But something is obviously going on with your breast, and of course you need to find out what it is. Hoping it is related to the mastitis.

I am hopeful you get the answers you need this week! Please let us know!