Anyone with Invasive Micropapillary Carcinoma?

rlmessy

Post routine mammogram that discovered "architectural distortion" that lead to a diagnostic mammogram/ultrasound that lead to an ultrasound guided biopsy that resulted in the first report of "Invasive Micropapillary Carcinoma." Still waiting on the details.

Research is stating a rare presentation, less than 2% with a not so great prognosis. But research is old - some 90's and early 2000 not a lot recent.

Anyone out there heard of this?

TIA!

Yogatyme

relmessy, I had invasive micropapillary carcinoma dxed in July of this year. (7mm tumor, stage 1A, grade 2, ER+, PR+HER2- I am also a BRCA1 carrier and b/c recurrence risk w BRCA1 is 85% for both breasts I had a bilateral mastectomy. No lymph involvement. I have also read some of the bleak literature about this bc but my breast specialist and breast surgeon both indicated that while no one wants bc, if you're going to get it, this is a good one to have. I choose to hang onto what I've been told rather than what I've read. I wish I had more to tell you, but this community is full of good information, so keep checking in

rlmessy

Thanks yogatyme. It's been a week for sure. We just told our immediate family last night so it's gotten real.

Are you done with active treatment? Chemo, Radiation?

I have yet to see the written biopsy report so I am using the language the nurse used to report to me. They are waiting for the ER/PR and HER status to come back I think.

Yogatyme

rlmessy, you are right, they are probably waiting for the ER,PR, HER2 results as that will determine the treatment. All I have had is bilateral mastectomy. My oncotype score was 19, which indicated no benefit from chemotherapy. Because I had mastectomy rather than lumpectomy I didn’t need radiation. They are recommending Femara (hormone inhibitor) but I am still on the fence about it bc of potential side effects. Many factors are playing into this decision, including my age (68), I had prophylactic oopherectomy in March, stopped my hormone replacement as soon as I got the diagnosis, BMI of 21, oncotype score, all breast tissue removed,so not much there to produce estrogen. I have also used the online recurrence risk calculators which you may want to check out after you get all the stats on your tumor. I hope you get your information and a plan in place soon. Waiting is the worst part of all of this. Take good care!

rlmessy

yogatyme...the waiting bites!! I have gone through this with my Mom in 2006, she was stage 3a, mastectomy, radiation, and herceptin. We know the drill but darn it still bites. We are due to possibly relocate by the end of the year so timing is worse.

I used a forum much like this when I was caring for her and it helped alot. But it looks like we are a small...tiny batch.

Was your cancer the micropappilary or just papillary?

Yogatyme

yes, we are a small group bc it is a rare bc. Mine was micropapillary. It certainly throws a wrench into our life plans, that’s for sure. I’ll be thinking about you and hoping for the best. Let us know what you find out. Everyone here is supportive and this is a good place to come when you just need to connect w others who understand from a first person perspective.

Mouse57

Hello - I was just diagnosed with invasive micropapillary carcinoma. It's a 2 cm mass at 12:00 8 cm above the nipple so I am scheduled for a lumpectomy/sentinel lymph node surgery Oct 24. (I had been negligent in getting my mammograms) I am going to Virginia Mason in Seattle where there is a breast cancer center. I have large saggy boobs so they saw no reason to do a mastectomy vs. lumpectomy.

The only difference the micropapillary part made was the biopsy was inconclusiv for LVI and they leaned more toward whole breast radiation than the other techniques which were partial breast. I will be able to get radiation close to where I live (I have to fly to Seattle) and I think they wouldn't have ruled out the other techniques if I had wanted to go that way.

So far there is no evidence in the lymph nodes in ultrasound or MRI so fingers crossed for the sentinel node biopsy. Depending on the outcome of the pathology and potential Oncotype I may avoid chemotherapy but will have radiation and hormone therapy (it's >90% ER+ and PR+)

Like you I googled all the references I could find and although sites refer to it as aggressive the statistical studies say that although local re-occurrence is higher, overall survival rate is as good or better than “regular" IDC. Although my feeling is that its just statistics one way or the other so aside from trying to learn enough to make appropriate decisions it is what it is.

rlmessy

Hi Mouse57!

Mine is at 12:00 4cm above the nipple - looks like our Pearls took up residence in the same place and sound a lot alike I am grade 2 as well. Still waiting on the rest of the results to come in. I have nicknamed mine Pearl - some sort of crazed coping strategy I think. Anyway, I have an initial team meeting this Thursday but this morning I am attempting to navigate the waters of having it sent for a second opinion at MD Anderson. So far, its not been too hard getting information on how to do that and my insurance will cover it - now I am waiting for the current pathology team to respond with how they will handle that.

beauz

Hi rlmessy, there's a topic, not very active, on invasive micropapillary carcinoma in

Forum: Less Common Types of Breast Cancer,

where you may find some useful information. All the best with your treatments.