I was just diagnosed with IBC

I'm so sorry. Hopefully she is wrong, but if she is right, remember that the dreaded word "cancer" does NOT mean you are dying and it doesn't always mean you need chemo. The diagnosis will change you life, but most of us here have gone through various treatments and are still very able to enjoy life. I think the hardest time period for me was waiting for the biopsy results. Try to stay busy doing things you enjoy during this time.

Missmom I'm sorry that your radiologist said that and has you worried, but a radiologist cannot make a diagnosis of cancer. Only a biopsy can diagnosis cancer. The most that a radiologist can tell you is that there is something suspicious that needs to be biopsied. Even BI-RADS 5 only means "highly suspicious", and 80% of all biopsies are benign.

Did they find a mass on your mammogram? IBC often doesn't show up on a mammogram (or ultrasound) because it often doesn't have a mass like other types of breast cancer. If they didn't find a mass and they "SUSPECT" IBC, they would either schedule an MRI which may or may not detect any skin thickening which would then require a punch biopsy, or they may go straight to a skin punch biopsy.

Don't panic until it's confirmed by biopsy. If the biopsy does confirm it, we have a good group of people here who are very familiar with the treatment of IBC.

DorothyB, IBC is always treated with chemo first.

Missmom,

Are you sure she said IBC? I know you went in worried about IBC, but your description of the mammogram image (sprinkled sugar) and the type of biopsy you'll be having (a stereotactic biopsy rather than a punch biopsy) sound more like it could be IDC (invasive ductal carcinoma) or even DCIS (ductal carcinoma in situ).

IBC is always at least Stage IIIB, and always requires chemo. IDC could be Stage I (or could be a higher stage - no way to know until surgery) and often does not require chemo. DCIS is Stage 0 and never requires chemo.

Good luck with the biopsy tomorrow. Hopefully the Radiologist is wrong and this isn't IBC, or even IDC or DCIS.

IBC is a type of IDC, but instead of starting in a duct and growing in a mass, IBC starts in the dermal lymphatic system and grows in a sheet/layer, which is why it typically can't be seen on imaging. IDC is the pathological diagnosis and IBC is the clinical diagnosis. But again, you can't have a clinical diagnosis of cancer without a corresponding pathological diagnosis.

If no mass is detected on imaging, a skin punch biopsy can confirm that there are cancer cells present. They typically take several samples to make sure they get cancerous cells if they strongly suspect IBC - I had 3 biopsies done. If there aren't any cancerous cells in the biopsy, they would monitor your symptoms closely because IBC progresses very rapidly, weeks or days. They might put you on antibiotics to see if it's mastitis. If your symptoms continue to rapidly get worse, they would do another biopsy. No doctor will treat you for cancer and your insurance company won't pay for cancer treatment without a pathological diagnosis of cancer.

"i wish there was someone to talk to here about having the imaging say one thing without a biopsy yet and he wrong about it."

Missmom there are numerous threads in the "Not Diagnosed But Worried" thread of women who had BI-RADS 4 and 5 and the suspicious mass was benign. 80% of all biopsies turn out to be benign. There are even more threads of people who suspected that they had IBC, but didn't. You're not understanding that a mammogram can NOT confirm a diagnosis of cancer of any kind, and somehow your radiologist miscommunicated with you by giving you the impression that it could.

But don't take my word for it, ask Djmammo if a mammogram can confirm a diagnosis of cancer. He reads imaging for a living and won't lie to you. Post a copy of your report in his thread and he'll help you understand what it says.

I don't mean to sound harsh if I come across that way, but I hate to see you letting yourself get all worked up when you really don't know one way or the other yet. Please take a deep breath and get a good night's sleep, maybe call them back tomorrow and ask them to review your report with you.

Missmom79. Best o take on board what LoriCA says. She knows more about IBC than everyone else herecombined.

There is a very good post at the top of the DCIS forum I linked to. It was written by Beesie who is very knowledgeable about DCIS. It has very thorough explanation about what DCIS is and how/why it is treated with surgery, sometimes radiation, but it doesn't need chemo.

I suggest you post your questions in that forum, where there are people who have a lot of knowledge and experience with DCIS. DCIS is very different from any invasive breast cancer.

It is correct that DCIS would not have lymph node involvement because DCIS cannot spread to other parts of the body. If you want to post your pathology report we can help you understand it. It is not possible to have DCIS and IBC. DCIS and IBC are at complete opposite ends of the breast cancer spectrum. DCIS is non-invasive and the cancer cells don't escape the milk ducts, unless it later changes to IDC (invasive ductal carcinoma), and only a small percentage of DCIS ever evolves into IDC.

When you'd mentioned the stereotactic biopsy and the mammogram imaging that looked like 'sprinkled sugar', it sure sounded like DCIS was the most likely possibility. DCIS is great news, as opposed to IBC.

Here is a thread that will help you understand what DCIS is and what treatments may be involved:

A Layperson's Guide to DCIS https://community.breastcancer.org/forum/68/topics/790992

Edited to Add: Lori, I didn't see your post until I'd posted mine. Thanks for referencing my thread!

Hey Beesie, thanks for writing up such a great thread on DCIS! I remember you saying in another thread that the description of missmom's mammogram sounded more like DCIS. I added the link to the article from BCO because it has a good description of what "high grade with necrosis" means.

Hi Flo, I'm likely looking another treatment change within a month, but I'm hanging tough haha! Sounds like a confusing situation for you. If you haven't yet started chemo and it isn't obviously spreading and they didn't find cancer cells in your skin, it is likely that it isn't IBC (aka primary IBC), but IDC with some inflammatory symptoms (IBC isn't true inflammation). Glad to hear that they are treating it as IBC just to be on the safe side. It really just changes the order of things, starting with chemo first before moving on to surgery. I expect they are recommending trimodal treatment - chemo, surgery, rads in that order. Hope treatment goes well for you!