Help, please?

SparkleTrail

hello

I am not yet diagnosed and I did post over there but since this is so rare, I haven't gotten many responses so I hope you don't mind me posting here.

I am a person that does much better with the most information, good or bad, so talking to you guys will help me and any anxiety instead of add to it.

I noticed some breast changes that were so subtle at first. The first thing was when doing my self exam and when doing the part where you squeeze the tip of the nipple, I noticed the left one now caved in instead of staying flush as it had before. Next i noticed that the color of that areola and nipple had faded. A few weeks later, I noticed a thickening above the nipple in one part of the areola. Then over thanksgiving weekend, I noticed a pulling on the underside of my areola...it looks like a pulled in smile and is without a doubt never been there before.

I called and had a mammogram on Wednesday at my local hospital (which honestly doesn't have the best reputation). They did not find any lumps, nor have I. They did see some scattered microcalcifications in that breast, along with the thickening of the areola (although I have a smaller section of that on my other breast too). They said the breasts were moderately dense so I know that also makes the mammogram not as reliable. But I'm far more concerned about these nipple changes than anything else. I had an ultrasound too but it didn't show anything.

My Bi-rad score was 4 with a referral to surgeon for biopsy consult. The report specifically says I needed to be seen for IBC which wouldn't have shown up but my symptoms are suspicious for. It also mention a lobule carcinoma could present similarly but that wouldn't explain the nipple changes.

From the images and things I've read about IBC, it seems that most people have more obvious inflammatory symptoms...rash, swelling and so forth. Has anyone just had nipple changes?

I'm open to hearing anything! Or any questions I should ask.

I was able to get referred to a top doc at a better hospital. She is a oncologist and surgeon specializing in breast. I am to have another mammogram and then see her right after next Monday. They said they may do a biopsy that day but I'm guessing that they will need an MRI before that so I'm not expecting it.

Thank you so much!!!

ibcmets

Sparkle,

I had mammo & ultrasound that detected IBC. They would need some kind of test to show exactly where they need to do the biopsy. Usually with IBC, there is no lump. Glad you are getting to see a specialist.

Terri

Kicks

Only between 1 & 5% of all BCs are IBC!

I, too, am one who wants all the info I can have on anything.   "Dr Google" does have  a lot of good info - BUT there is also a lot of bogus manure there.

IBC only effects between 1 and 5 % of all BCers - but there are some of us who fall in that 1-5% area.

For me, a node went from not being there 1 night to the size of an almond the next night.  I was sent for a new mammo and sono and biopsies immediately followed - next morn had the path - as expected - IBC.  Just under 3 weeks later, I started neoadjuvant chemo.  I never had any pain or 'redness', but did develope peau d'orange, inverted nipple swelling.

IBC does not show as a 'lump'.  It forms as  a 'nest' or 'bands' - at least til neoadjuvant chemo.

SparkleTrail

The man I date lives out of state so although this is embarrassing, I had a few pictures of my breasts from July, sept and oct and there are obvious visible changes. I guess now I am hoping that there is something to prove to me it's not this vs then just saying they don't think it is?

I do think if I caught it that it could be early since I don't have those other symptoms?

Would you guys insist on a pet scan to prove it one way or the other?

Kicks

Biopsies usually come before PET scans!  You said there was an area that was suspicious for ILC - so biopsy that area first.  Without pathology (a biopsy), there can not be a diagnosis of cancer.  Highly suspected - YES;  diagnosed - NO.

bride

SparkleTrail, my only visible or palpable sign was a flattening of one nipple. On biopsy, I was found to have two tumors and also lymph node involvement. If you're concerned, have a biopsy: unfortunately, time does matter with IBC. It really is worth your peace of mind to know for sure what's happening. 

Good luck and many good wishes.

bride

Hi Bon,

What was noticeable with me was the flattened nipple and a very slight temperature difference between by breast. I live in a tiny town with no docs familiar with IBC. During the 4-5 days it took to get me into a NCI, my breast got mildly angry-looking and much warmer. Although it felt like WWIII was going in my breast after my first chemo, I now have no outward signs of IBC. I'm beginning to think IBC is not only invasive and aggressive but darn wily.

bride

bride

Thanks Bon! Too bad no outward sign doesn't  reflect an inward health. I just got a call that the final analysis of my MRI suggests another couple of lymph nodes have anomalies.

 I am not happy!

And Bon, thanks for your support.

bride

kjsimpson

Bride,

Sorry to hear about the lymphs.  It is hard to keep getting bad news in the beginning.

The good news is that you are early in your treatment plan.  You got this!  KCA!!

bride

Bon, Kathryn, {{{hugs back}}}. I'm okay with giving away 3 cancerous lymph nodes: if 2 are even a bit shady, they can leave me anytime. 

Monday was just a hard day. On Sunday at 2am I went from feeling unwell to feeling perfectly fine in about two seconds. That was a pleasant shock. Monday was just unpleasant. I had back to back consults with my surgeon, radiologist, and OC. Three powerful women who speak their minds. My mind and voice agreed with my OC and radiologist. My surgeon didn't agree. And during the whole time someone had coded in the blood lab which is located between the docs' offices. Just a weird day.

Today I've got my game face one and am ready to go slay dragons. But it's 12 degrees out and in Georgia that's like saying the sky is falling. So instead of facing dragons, I'm playing laser tag with some of my once-feral-now-house-diva cats.

Course, since finding this site I feel sort of like a once-feral-now diva. Thank you for that.

bride