Worried About Inflammatory Breast Cancer? Start here
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Hello everyone - I was diagnosed with Triple positive on left breast in Sept 2020. I had a lumpectomy, chemo and radiation 2021. I was fine all this while until had a mammogram in Aug 2023 last year for a different issue and a CT scan. Normal again. However, I found that the left breast was starting to get swollen and some small lump forming at site of radiation (which I was told maybe scar tissue) which could be massaged away. But it kept coming back so went to see BS in Dec 2023 and she said she was not concerned and ordered US and Mammogram. Both normal. Some thickening was noted on side of radiation. After this mammogram, the breast is now hard, firm and more swollen. Not much pain but just some needle piercing at times. It seemed to me that the mammogram was causing some injuries. I met BS yesterday and she suspects that either cancer has come back or it’s post radiation changes such as fibrosis. In the meanwhile, I went to a physical therapist who thought it might be lymphedema or seroma and was working on it. I have an MRI scheduled for Monday. Anyone in a similar situation and has gotten any result? Is this how IBC starts?
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@hopeful2020, we're sorry for the changes you're seeing and the worries you're experiencing, but glad to hear that you're scheduling an MRI. We hope those changes indicate a benign condition, but better to check it out!
Until you get responses from other members here, we wanted to provide you with some links to information about the symptoms of inflammatory breast cancer:
Inflammatory Breast Cancer and Benign Breast Conditions.
Hope this helps! Take care, and please keep us updated on how you're doing.
The Mods
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Hi, I am concerned I have IBC, symptoms started with my areola skin scaling/peeling and itchiness under my breast about 4 weeks ago. Got into my family doctor, Dr. R, Feb 15, he referred me to the doctor who performed my lumpectomies and lymph node surgery and I saw him, Dr. K, Feb 23, he did a biopsy on my areola which came back clear. I had a mammogram Friday past and the technician also took photos of my breast because of the slight edema in my skin on the underside of my breast which has been developing over the last 2 weeks.
I happened to have an appointment with Dr. R yesterday for an unrelated matter and he said the imaging came back clear, no signs of anything. I have a follow up appointment with Dr. K tomorrow and I’m just wondering what to ask him about. With nothing showing on the tests performed I don’t know what’s next to rule out IBC.
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@doeraemi - I am not sure anyone is watching this forum. I am still waiting for my diagnosis but posted in IBC lounge and got a couple of nice people to talk to @lw422 and @bsandra.
I would ask your doctor exactly what you said - how are they ruling out IBC and what is the diagnosis they are making for the edema? For me, they did an MRI based on the clinical exam. Biopsy is scheduled for Monday. Is there a rash or dimpling of the skin? If this is on the same breast as your lumpectomy, could it be starting of lymphadema?
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@hopeful2020 there is slight dimpling and pinking of the skin, it is the same breast as my lumpectomy.
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We agree with @hopeful2020, @doeraemi. Being direct with your doctors and asking what the next steps are to rule out IBC allows them the opportunity to explain their process. If the explanation is unclear, don't hesitate to let them know that you need more information to follow. Sometimes it can be helpful to remind them that this is information that allows you to manage your own anxiety. Separately, some have found it helpful to ask the doctor permission to record the appointment so they can review later on and absorb the information. It can be hard to process all of the medical information in the moment, especially when you are feeling particularly anxious. Please keep us posted as you continue to find out more information.
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Thank you 🙂
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not sure if this forum is still active, or if I’m just yelling into the dark. I have several symptoms of IBC, brought it up to my PCP at my last appointment yesterday. He has some experience with IBC, so I was pretty confident he was going to say no, it’s just cellulitis, or excema, prescribe some antibiotics, not a big deal. Instead he got very somber (he’s usually laughing and joking), and said “we need to get you in to Surgery, you’ll want to make an appointment with ————, she has experience in this”. Too rattled to think to ask what THIS is, but I’m thinking he may not diagnose. Not sure what’s happening at this new appointment next week, if it’s just a “hi, how ya doing?”, or if they’ll do a punch biopsy there, or what I’m looking at.
I’ve got several risk factors, calculators have put me at 21-22% chance. My maternal grandmother had breast cancer, unsure of what type. I didn’t even know there WAS types. I breastfed, but nobody told me that protection only occurs if you bf past a year. I did 6 weeks, and 6 months. They’re now 6 and 4 years old, and we celebrate our 7th anniversary next month. I’m scared it’s going to be my last one.
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@silverblaze85, we're sorry you are here and worried about your breasts, but glad you found us! Please know that you're not yelling into the darkness; this wonderful community is here to support you.
For now, and until you get responses from other members, we recommend checking out our section on Inflammatory breast cancer first signs and symptoms. It can give you some insights into what to expect and questions you might want to ask at your next appointment. We understand it can be scary, but it’s good that your doctor is taking this seriously and referring you to someone with experience. Please, come back to let us know how it goes!
Best wishes,
The Mods
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@silverblaze85 - sorry to hear about the IBC symptoms. First step would be some kind of imaging. If IBC, I think MRI is the most convincing as mammogram and US may not pick up if IBC (at least did not for me). Then a biopsy to determine what markers - hormone positive and/or Her2 or none. Then depending on that maybe more tests and then treatment plan.
I have heard people here say that IBC is a clinical diagnosis so based on the breast exam, biopsy and imaging they will need to find out more about whatever THIS thing is.
Hang in there. You will have many more anniversaries together, don’t worry about that.
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