Worried IBC - all scans clear - can I push for a biopsy?

When you get your second opinion hopefully that doctor has seen IBC before and can comment on the symptoms you are having. If it was me and the second opinion doctor would tell that it's not cancer I would leave it alone. Biopsy leaves scars and maybe later on mammograms would be not clear. And you are right IBC is very agressive and the symptoms do not get better but worsen very quickly but it would be very unlikely that a specialist would still misdagnose IBC after symptoms have been present for 3 weeks. Something is obviously wrong with your breast and hopefully the specialist can spread some light onto what's going on.

'Something' is 'going on' and you definately do need to find out what it is.

There are many possibilities for what you describe that have nothing to do with ANY type of BC. We are not medical personnel who are seeing you so can NOT tell you what you have going on.

I am IBC and NEVER had pain or any discolored skin in the 24 days from first presentation until I started neoadjuvant Chemo. It was a week from presentation til I got my DX and it had definitely progressed in that time. In the 17 days til starting Chemo, it had majorly progressed BUT never had any pain or 'discoloration'. There are no 'set in stone' rules that IBC (or any issue) has to follow and not all of us have the same experiences.

It does take a biopsy to diagnose IBC. But there has to be at least a suspicious area (not some random area) to know where to biopsy. Not all biopsies leave scars. FNBs (Fine Needle Biopsy) are a needle put in - not an area cut open leaving a 'scar'.

Do find out what is going on but do not jump to unfounded conclusions prematurely.

Added - an MRI might be a 'next step'.

You can ask for a biopsy but there needs to be a suspicious area to biopsy. You said that your mammo and US showed no area of concern so no way to know where to try a biopsy.

It's great to say 'want a biopsy' but for a biopsy to 'work', there has to be a particular area to check. A breast is a large area and the entire area does not have what needs to be checked for. In other words, there has to be a limited area to check. It takes getting the right area to biopsy to 'rule in'/'rule out' anything.

From what I have read/heard, while there are a very few who do experience pain with BC, pain is most often associated with nonmalignant issus.

Do find out what is going on'.

Why don't you trust your doctors diagnosis of Mondor's?

People go to M.D. Anderson Cancer Center from all around the world.  It is and incredible place.  the doctors are fantastic and so competent.

I just had an mammo, lung x-ray, MRI, sonogram, and a biopsy all in one day.  The results from everything except my biopsy were typed up and ready for my appointment the next day at 9:00 am.  That is truly amazing. 

I just got the results but I have not spoken with my doctor yet.  Atypical Lobular Hyperplasia with Focal Microcalcifications was detected.   I do not have the pathology report yet so I do not know the size.  I asked the doctor how large the "non-mass" area looked on the ultrasound when she was reimaging to get ready for my biopsy and she said that it appeared to be 1.3 X 1.6cm.

I do not have a copy of my pathology report yet.  However, my RO at M.D. Anderson Cancer Center told me that I have Atypical Lobular Hyperplasia with Focal Micro Calcifications.  He said that this is benign and that the Arimidex/Anastrazole should prevent this from becoming a malignancy.   He told me to, "Stay away from doctors" and to come back next year for my next MRI.  I also have Stromal Fibrosis but that is due to the radiation and is no big deal.  ALH is a big deal but with the Anastrazole, it should not be a problem for me.

My cousin was diagnosed with DCIS approximately 1 month ago.  She had a lumpectomy and she got her results on Wed.  I received my results on Monday.  The lumpectomy for the DCIS went well and she had clear margins.  However, they also found ALH.  They are recommending a mastectomy for her or another lumpectomy and then radiation and tamoxifen.  I would think that she would have had the radiation and tamoxifen along with the lumpectomy for her DCIS.  She will be going to a Medical Oncologist and ask the MO's opinion.

I don't know, but I think that my ALH was much bigger than my cousins because mine measured 1.3cm X 1.6cm.  She does not know the size of hers but her DCIS was 4 mm.  The ALH was an incidental finding from the surgery so I don't think that they know how big it is. I think that is why they are recommending additional surgery???

It is interesting how 2 people can have the exact same diagnosis yet doctors can recommend totally different treatment plans. 

I feel very lucky and very relieved.

I have my next appointment with my MO on 12/14/15 and that appointment was scheduled in September.  I am looking forward to discussing this with her too.  I am sure that she will concur with my RO.

Thanks for asking.