Invasive Micropapillary

littletower

Anybody else dealt with this sucker? 17 out of 29 nodes positive, 2.3 mm tumor, agressive and rare. Hope I'm not completely alone in this.

LittleFlower

LIttletower, i'm sorry for your recent diagnosis... can't offer much in relating since i didn't have this diagnosis, but i just wanted to send you gentle hugs as you go get through your treatment.  Hopefully someone with a similar diagnosis will be along soon to offer some more understanding.

LIttleFlower

HelenaJ

Hi Littletower, I have invasive papillary carcinoma, which is also rare, but I looked it up and it is different to your diagnosis.  I too just wanted to post to send my support and send a cyber hug. 

big hugs

Helena

littletower

thanks Helena! Yea, research shows yours to be the lesser of the breast cancer evils, but breast cancer in general sucks, sucks, sucks!! I'm a stage 3 and going into major chemo and radiation, whatever it takes right? Be well, get healthy and big hugs

littletower

Looking at other posts it is unusual not to have more responses. Hope more people will reach out. How are you doing?

HelenaJ

Not sure where you are but I am in Australia and find that a lot of people are asleep when I post ... sometimes it takse a day or so, I'm sure more people will post - maybe not with the same diagnosis though but with offers of support and empathy.  This place has been my saviour.

I'm doing OK.  And yes, my stupid BC is supposed to be the lesser crap but still doesn't stop the fear.  I feel for you heading into chemo and rads, I bypassed all that with a bilateral mastectomy and oncotype score of 6 so am just on tamoxifen and so far it's all going ok.

There are always threads on "starting chemo in September" or "starting rads in September" subject headings which puts you together with woman going through exactly the same treatment at the same time.  Just a thought.

Off to take my girls to netball (it is 8.00am over here) - I know too bl*#dy early!!  I will check back in on you later.

big hugs littletower

Helena

DCMom

littletower,

I am unfamiliar with your dignosis, but just wanted to let you know I am thinking about you as you start this process.  Yours may be aggressive, but they still put you at stage III and I know I have seen other women with similar node counts doing well years out.  Someone posted once that we stage IIIer's know we will have the kitchen sink thrown at it.  

I wonder if people aren't busy getting kids back to school at this time of year as I have noticed a definite slow down of posts recently.  And take that as a good thing because that means their lives are going on with normalcy. 

HelenaJ

Hi Littletower,

Doesn't look like there are any other Micropapillary ladies out there.  I have only found 1 other lady on this site who has my Papillary carcinoma. Its hard being unique!!!!!  I hope the chemo and rads journey isn't hard on you - good luck and big hugs

Helena

AzKim

Hi littletower,.I don't know anything about your cancer,.but,.hang in there,.cancer of any type B-L-O-W-S!

littletower

love your attitude, yes, it absolutely, B-L-O-W-S... and not in a good way:)

AzKim

@'s but,.it will not take me....it can go BLOW somewhere else and kiss my fluffy butt! That's not a good way,.either,.lol. ' )

unique-sis

Hi,

I am new here. Not sure what to say. My sister was recently DX with invasive micropapillary carcinoma, 6 aux nodes tested 2 pos with one micrometastic. PR ER + HER2 neg. Extremely aggressive in all accounts. Tumor size 4.3 CM. I am thinking of a 2nd opinion for her path report. She already had a lumpectomy. She refuses any chemo that makes her hair fall out so the Onc suggested Xeloda. I am not finding info that this is a worth while substitute. Rads for 6 weeks. I must mention to you that my sister is 59 and mentally and physically handicapped and has very poor health and barely understand what cancer is other than it kills. I just dont see her taking any chemo. She was born with low platelets had inoperable brain tumor 4 yrs ago.I have, however done alot of research, my point is to make she does not suffer from side effects of treatment if they will not help her. Dr.'s seem to want to push treatment not taking into account her physical and mental stamina and well being and never having a patient quit as special as my sister (they are stymied). This said, I may be able to answer a question of two because of my "OCD" like research. Best to you!

Mantra

My pathology report says micropapillary. It also uses a few other terms that are concerning: neoplastic glands and myoepithelial layer.

This is in addition to finding numerous tumors in the umpectomy, solid, comedo, Grade 3 and E/R P/R negative. Lots of bads stuff and I know my cancer is very aggressive. Two positives are that as August 10 when the lumpectomy was done, it is still DCIS and 3/3 nodes negative. I am having a mastectomy this month as the doctors aren't comfortable they got it all and given the aggressiveness, they are recommending a mastectomy.

KerryMac

Unique-sis - someone else will hopefully be able to remember better, but there was a woman who used to post here (before my time) She had a daughter who was mentally handicapped as well, and Dx Stage Three. They gave her Surgery only, no Chemo. She was treated with Hormonals, I believe Tamoxifen. She was doing well, three or four years out, I believe. I am sorry i don't know more about her situation. But if your sister won't have Chemo, there certainly are other options. Best of luck to you.

barbe1958

Mantra, I'm the one that Helena was talking about! I have the same cancer as Helena, but as she said, it's not the same as yours. I have PM'd you back.....

brooklynchickens

 Yes, I have this too.

My tumor also was 2 cm and had spread to half the lymph nodes checked.

micropapillary is so aggressive about spreading to lymph nodes that it is almost always more widespread than regular ductal by the time it is detected, even if the main tumor is not large.

Remember that this is a relatively recently recognized subtype whose diagnosis rate is going up.  What that means is that whatever has been published is based only the most obvious cases, and that negatively skews all the results.  As more cases that would have been overlooked before are now labeled invasive micropapillary subtype, the recurrence and survival numbers will improve without any change in treatment.

I also have found it suprisingly hard to locate other women with this diagnosis.  Yeah, it's 4% of cancers, but that's still thousands of women a year. Maybe their pathology reports are so overloaded that they don't understand that this piece of data really matters. I know I read my report, saw 7% was micropapillary subtype, thought "i don't have to care about 7% blah-blah-blah and went on reading.  It wasn't until I got on the net that I realized -- that 7% is  the single biggest risk factor in my odds of recurrence.

DCMom

brooklynchickens- Your post got me to wondering.  I have a friend who at the start of my diagnosis said she had four positive nodes (definitely stage 3 I would think), but her oncologist had told her she was barely stage 2.  Later upon discussion she said that her tumor had been about the size of a pencil eraser...which sounded like a good thing to me then, but now reading about micropapillary invasion it makes me wonder if that was what she had.  So many subcategories and classifications are available for comparison now that just weren't looked at then.  She is 16 years out now, doing very well, looking great, and another example of the diagnosis doesn't really matter.  Hit it with everything offered and avoid checking the stats, we are not statistics.

leighannmarie

I was diagnosed with invasive ductal carcinoma, micropapillary type.  No nodes showed up on MRI or ultra sound but, the one node removed at SNB was positive.  I just had an axillary dissection, post chemotherapy) and the 3 nodes removed are negative.  Now trying to decide if radiation tx needed to axilla.

leighannmarie

Also of note:  My original report DID NOT mention micropapillary.  I sent path for second opinion. The second path called it micropapillary so, it is still not always diagnosed correctly. 

littletower

Hey Leighannmarie,

Did your oncologist talk about the very agressive nature of this type of cancer? And did you decide to rads to axilla? My last taxol is Thursday, a little more surgery then rads in March.