Invasive Ductal Micropapillary Carcinoma
I've recently been diagnosed with this rare form of IDC that is more aggressive. It is a mixed form containing ductal and micropapillary components. Although my tumour was (had BMX and reconstruction) only 1.4cm, it has been found in 3 of 7 lymph nodes sampled and is a Grade 3. I've yet to be staged as I need scans to confirm no metastisis to organs or bones.
It seems that this is only a recently identified form of IDC and not to say that it has never existed before. There are few statistics and little information available about it although it has been shown to be aggressive with a high rate of metastisis.
I'm starting FEC-T chemo, 3 sessions FEC and 3 sessions T, beginning 9 May.
Any information I can share, I will, so that future members diagnosed have some information when searching. I'd be grateful for any information from those of you who know something about this.
Comments
-
Hi LifeLover,
I also had this diagnosis - only 5.8mm luckily grade 2 and node neg. There is one other sister on these boards who had the same type - she was the only one I could find. She had lots and lots of nodes positive. I did a lot of research into this type and found it is still treated as normal IDC - the only difference being that it can be in many nodes on diagnosis. I think mine might have been kept under control as it was present all the time I was having chemo for my nasty lobular one found the year before. The Ductal one was missed on my original mammo.
Sue
0 -
One other point, my onc said they don't always test for this, so it might be more common than we know.
1 -
Hi Sue,
My understanding is that micropapillary is identified under microscope and the cancer cells are formed differently from the ductal. I also believe that this has only been differentiated from ductal carcinomas in the last 5-7 years hence the lack of information available on this newly identified form. My IDC is predominantly micropapillary.
I also understand that micropapillary carcinomas are almost always Grade 3.
There is more and more information available on this every month. Here are a couple of websites that helped me to understand it a bit more.
http://ajcp.ascpjournals.org/content/126/5/740.full.pdf
http://eng.hi138.com/?i281118_Breast_invasive_micropapillary_carcinoma_clinicopathological
http://eproceedings.worldscinet.com/9781860948800/9781860948800_0034.html
0 -
Thanks for the articles. I had done extensive reading about it when I found out I had this rare type but I can't remember if I had seen those ones. I asked my onc if the chemo I had for my lobular cancer the year before could have lowered the grade of the ductal. He said it could. You can see the area on my mammogram from 09 but it wasn't reported as it didn't show on both views. I just reread my pathology report and it was definitely grade 2 with no lymphovascular invasion. I guess I was lucky. The other lady I met on here had 18 out of 28 nodes positive. My lobular cancer was also a very rare one being triple positive 0.1% of bc patients.
Sue
0 -
Fairly up-to-date researched website (June 2010):
http://www.breast-cancer.ca/type/micropapillary-breast-carcinoma.htm
0 -
Thanks LifeLover - I am really lucky mine was small. It was very highly ER receptive too (>90%)but only 20% PR. Interesting they say it's usually found in the left breast - mine was in the right - trust me to be different
0 -
I am newly diagnosed with this. They have not found the primary mass. I had a lymph node in my breast biopsied, and there are multiple enlarged axillary nodes. I hope all is going well for you. I am having an MRI on Monday, and praying things speed up. The waiting is so hard.
0 -
I hope they find it and get it out of there!!!!!
(((((((((((((HUGS)))))))))))
Sue
0 -
Sorry Ladies, I've taken some time off from reading about my illness after a miserable first chemo
Anyway, I'm feeling a bit better now.Sue: Mine was in my right breast (inner area) and I could feel it - I found it in January 2010 but they didn't think it was cancerous and the fine needle biopsy they did was clearly not good enough. I'm 100% ER positive.
Southamptonmom: Good luck with your MRI. The waiting is the hardest part. In the meantime, find out as much as you can and always ask your doctors and the experts to clarify any questions you have as misinformation can be depressing. Some of the news on the internet is scary and inaccurate.
My CT and bone scans were clear so my BC hasn't spread to my bones or organs. Thank goodness. I'm so thrilled with that. My oncologist and I have decided not to remove the rest of my lymph nodes so chemo is essential. I can't have radiation so although that would be helpful, it cannot be done (previous cancer and no more radiation possible). It is believed that my BC was caused by radiation as it is just in front of the Hodgkins's Lymphoma I had 17 years ago (next to my windpipe).
Please keep us updated Ladies. I promise to do the same although I will ocassionally need time off to "pull myself together".
0 -
Anytime I do find anything about our rare type of BC, it's not good. Has anyone heard any good reports? I'd like to hear that neoadjuvant treatment with BMX is a cure. Ugh.
0 -
Hi SouthamptonMom - how are you? What treatment have you had so far? Sorry to see you were HER2+ve - are you having chemo/herceptin?
Sue
0 -
Hi Susieq, I just finished AC #4. Feeling like crap. I start taxol and herceptin next. 12 weekly treatments then BMX/Rads and back to herceptin. I don't understand why the HER2+ is bad??? I am trying to stay positive, but tonight it's hit me hard. I am so afraid... What treatment are you on for your second dx?
0 -
Southamptonmom,
I'm sorry to hear about your diagnosis. HER2+ is not necessary bad though - it is, in a sense, not as good to be HER2- because being HER2+ they are able to treat your BC with herceptin.
I have not heard much good about micropapillary, unfortunately. However, my oncologist does not place a lot of emphasis on this diagnosis. He insists my survival rate is in the high 70's which contradicts what I've read. But I try to remember that a lot of the information on the internet is old and the "goal post" is constantly being moved.
0 -
Thank you Lifelover! The stats on my local cancer center web are not promising. 70 percent is a much better number! There are only 3 of us on these boards, but we represent Australia, UK, and US! Did you have surgery before or after chemo?
Susieq, I have family in Australia. I believe in Melbourne, Victoria.
0 -
Is micropapillary, different than papillary? And if so in what way? My tumor was almost like two separate tumors, as it turned out to be IDC instead of the DCIS they originally thought it to be, and if you look at my stats, they said grade 1. Everyone I've found that has "papillary" as part of their cancer dx had BMX...Makes me feel like I'm on a bit of an island with my Lx and Rads. They told me that this cancer was often dx'd in women 65+, but I'm 37. I always feel like my MO is evasive and lacks details in terms of stats about my cancer. I'm going to push about the "micro" aspect of this next week at my quartelry appt.
0 -
GirlFriday, they are two different beasts. My MO is evasive as well. Micropapillary invades the lymphovasular system like a "web" of cancer instead of a single tumor. Mine is diffuse (throughout the breast) and did not show up on mammogram. (((Hugs)))
0 -
Sometimes I feel like my MO is just so overworked, she's stopped looking at current data. It's almost like she's habitual in treatment, and forgets the individualized component. I totally lucked out and did not have to do chemo, although there was a stressful 4 weeks waiting for the Oncotype, but I sometimes wonder if they did it correctly...all of it...all of my pathologies. I kept "surprising" everyone, my age, my cancer type, the nature of the tumor from DCIS to IDC...did they really take all the right samples of the tumor to test? If my tumor was "two faced" did they test both parts? I guess there will always be doubts, and I have a lifetime of watchful waiting. The MO calls my cancer a "good" cancer. I guess I should just be satisfied with that!
0 -
Southamptonmom,
Hi there! I had my surgery prior to chemo because I was high risk having previously had Hodgkins Lymphoma 17 years ago with high level radiation treatment. My surgeons and I agreed that the mastectomy was the right choice because of the radiation damage.
0 -
Hi GirlFriday. No BC is "good" really, is it? We all face the same worries about recurrence and how long we will survive. I say, just keep a watchful eye on how you are feeling and don't skip your check-ups.
My oncologist is also evasive and I think they just don't want to commit to anything - in other words, they don't want to make promises.
My micropapillary IDC had DCIS along with it. Funnily enough, my biopsy the year before (a fine needle biopsy performed rather half-heartedly by a breast surgeon) did not reveal any cancer cells. Yet, I had the lump for several months prior to my check-up. Being a high risk patient, it seems to me they should have given me a more thorough biopsy. But what's happened can't be reversed so I will fight for as long as I can and live life to the full!
0 -
Sometimes life is just not fair. Cancer once is once too many! Getting a double dose just is not fair!
0 -
Southamptonmom - It was the second bc that was micropapillary and not HER2 - I only had rads for that. Actually HER2 is no longer as nasty as before because of the Herceptin. My onc was actually pleased I was triple positive with the first one because of the targeted therpaies.
Hey - you are now on the home straight - the TH part is much easier I've been told.
Sue
0 -
Hmm...I was just re-reading my path report. My cancer was micro papillary as well. I am 16% er, and 95% pr, and her2 + as well.
Not even sure I want to read those studies y'all linked. I am doing just about everything in my power to stay healthy strong and positive!!0 -
I should also add...that my pathology was done twice...there was a mixup. And strangely...it was grade 2, even with the her2 which usually makes it a grade 3. Go figure.
0 -
Hang on to that strong, positive attitude geewhiz!
I've had a few moments of despair but my positive attitude and love of life has helped me cope with all the surgery, chemo and "other stuff" that goes along with this diagnosis.
I intend to live a long, happy life!
0 -
I'm with you on that one, lifelover! My new MO said not to look at the type, but rather the fight! I'm going to kick some micropapillary lymphovascular butt!!
0 -
Ok, so I went to the links, googled etc. It seems that there is a possible link with DNA methylation and this cancer type, and e cahedrin...the sticky stuff that keeps cells from breaking away into mets.
The cool part was that the DNA methylation is reversible, so lots of studies are focusing on that. One articly mentioned Burzynski, and his antineoplastin work. It is a crapshoot, because some of what deregulates or downgrades the process....can also up regulate or stimulate invasiveness in other people. Scary.
For now, indicators seem to be to stay far away from all alcohol, which is methylating, and to take more folic acid and b12 vitamins.0 -
Oh no! I stopped drinking wine, but was hoping to have some again when I'm done chemo. Guess I'll be a whine-o instead of a wine-o!
0 -
Sure wish I could find some happier info on this stuff!! How in the heck did my oncologist and my oncology surgeon blow past this on my path. It says right at the top...idc with micro papillary features.
0 -
Hi I'm another Micropapillary Australian girl over here.
I've got 3 boys, a 13 year old, an almost 5 year old and a 12 week old baby.
I found my lump in my last month of pregnancy, it was about 1.5cm when it first appeared right next to my nipple.
As I was pregnant at the time an my boobs were changing getting ready for the birth of my baby my midwife told me it was probably a blocked duct.
So after my milk went down about 4 weeks after the birth ( I didn't breastfeed) I noticed it was much much larger probbaly around 8cm.
I isited my local dr who put me on antibotics for mastitis, after a week it hadn't changed at all but it did start hurting. She sent me for an Ultrasound. The Ultrasound showed up as Mastitis, My Dr wasn't happy with that so she sent me for a mammogram. The Mammogram only showed up as a more dense breast and they also said Mastitis.
My DR wasn't happy with this and I ended up seeing a breast specialist who confirmed in under a week with a core biopsy that I had Micropapillary breast cancer which by that stage has now grown to 10cm taking up my entire breast.
I have also had two lymph nodes biopsied and they are postive too, I'm not sure how many more positive nodes I have yet but I'm sure there is more.
My CT and Bone scans were clear which was a huge relief and I know now that I will win this. battle no matter what.
I have to be here for my kids, there's no way I'm leaving them and I will fight no matter what/
I'm starting Chemotherapy on Monday morning to try to shrink the tumor before we do surgery, they are thinking maybe 3 or 4 cycles to start with. I just want to get started as my tumor is quite painful and is getting worse by the day.
I also can't wait to see this sucker shrink down to nothing, that would make me extremelty happy.
I'm definately feeling much more positive now than I was the first week I found out, that was the worst time ever, waiting for the other staging tests.
I don't care what statistics say, we will all beat this and make ourselves some new statistics!!
Screw those old ones, they SUCK
0 -
Hi Bella! I'm so glad you found us! I am very impressed with your doctor. I believe that many young women who've just given birth are ignored, and as you know, this is a very aggressive cancer. You are an amazing woman, and you are right, screw the stats!
I have finished 4 DD AC, and I am onto #2 of 12 taxol and herceptin. The cancer in my breast is completely lympovascular and there is no primary tumor, but I did have a 3.3 cm tumor in an axillary node that is now 1/3 of its original size! I can't wait until I have surgery sometime in December and have IT out of my body. Keep us posted on how you are doing! Lots of (((HUGS))) to you! Rose
0