invasive papillary carcinoma

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singlemom1
singlemom1 Member Posts: 434
edited June 2014 in Stage I Breast Cancer

Has anyone else been diagnosed with invasive papillary carcinoma? I have just been diagnosed and looking for any information about this type of tumor, treatment and prognosis.

thank you!!!!

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2011
    Did your pathology say micro papillary carcinoma?
  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2011

    This site has info on that type:

    http://www.breastcancer.org/symptoms/types/rare_idc/papillary.jsp

    I was diagnosed with micropapillary carcinoma - don't know if it's the same thing.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2011

    I just looked it up - yours is not the same as mine. Looks like your type is a good one in that it rarely spreads and is slow growing.

  • singlemom1
    singlemom1 Member Posts: 434
    edited April 2011

    There seems to be some confusion and I am waiting for clarification from by doctor this morning. I was told by the nurse it was MICRO papillary, but now I am being told there might of been a mix-up and it is just the invasive papillary carcinoma. I am trying to find out info on both until it is clear what I have. Could you please share what you know about the micropapillary diagnosis,tx and prognosis? thank you so much!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited April 2011

    First off, sorry you join the sisters with rare types of breast cancer.  I just found this information which might be of benefit.  BEFORE YOU READ IT, keep in mind the following.  First off, there is very limited information about rare types of breast cancer.  So finding stuff might be very out dated.  Furthermore, most of the treatments that are used to treat rare breast cancers are based on the evidence used to treat the more common breast cancers.  And, since there are few women with these types of cancers, the data quoted might not be as statistically significant as they would be for a larger group of women.

    I also think you have to nail down your pathology report.  And if it's confirmed that you have a rare breast cancer, it's not a bad idea to have a second pathology lab look at the specimen.

    Good luck.  My thoughts and prayers are with you.

    http://www.nature.com/modpathol/journal/v14/n9/full/3880399a.html

  • lifelover
    lifelover Member Posts: 553
    edited April 2011

    Hi Singlemom,

    My core biopsy showed invasive ductal micropapillary carcinoma of irregular shape from 1-2cm, estrogen positive.  I had a double mastectomy last week due in part to my high risk having had Hodgkins Lymphoma and extensive radiation for that 17 years ago.  (I also had immediate reconstruction after the mastectomies.)

    I'm waiting for the report following my mastectomies to confirm my diagnosis but I did some research on the internet and am a little confused because there is so little information available but saying that, I did a search on google and came up with a lot of information.  It seems that it can be fairly aggressive and is rare.  I'm trying not to worry until next week when I get the results and speak to my oncologist. 

    I'll keep in touch on this thread - and hope that you will too - we need more information on this type for sure!

  • americanpinay
    americanpinay Member Posts: 338
    edited April 2011

    Hi Singlemom1,

    I was diagnosed with invasive papillary carcinoma in 2008. I am currently on Tamoxifen as my tumor was highly ER/PR positive. Please see my signature for all other treatments I received. Have they staged you yet? I believe your treatment would largely depend on the stage.  As far as prognosis is concerned, I read that papillary cancers are typically slow-growing and prognosis should be a little bit better. What's confusing is that I also read some other type of papillary cancers (micro?) that are supposed to be a little more aggressive? I went back to my pathology reports and can't find the word "micro" so I am assuming mine is the slow-growing one. Tongue out

    BTW, I also read one downside to "slow-growing". Supposedly, chemo may not be as effective on them because chemo targets fast-growing cells?  Sigh. 

    Good luck and please feel free to PM if you have any questions. Take care.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2011

    When I was diagnosed with Papillary Carcinoma there was so little on it that my surgeon Googled it and brought pages to the operating room to show me!!! There was only ONE item on Google! (83 yo woman presents with breast mass....blah, blah, blah) Now you're saying there are different kinds!?!?! We account for less than 1% of all breast cancers. I used to post my diagnosis below my posts, but I had women on here telling me that I was lying and didn't have cancer! They confused it with Papillomas, which are benign tumours.

    Mine was 1 cm. At the time my surgeon didn't know what to do with me so I got a double mass due to ADHP in the other breast. I didn't get any chemo, rads or any further treatment. None. Nope, not even Tamoxifen!! I have felt like a sitting duck for 2 1/2 years!!!! There are only a couple of us on this forum and everyone else got much more aggressive treatment than me. Now someone will ask if I did AIs. NO. Nothing! No Herceptin, No Femera, NO NOTHING.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2011

    I seem to recall that my pathology said non-invasive. I learned later to just say IDC as it should be treated the same. I finally demanded to see an onc 9 months later (after reading this forum) and she said I kinda "slipped between the cracks" (her words!). Um, YA!

    I did have 2 nodes matted together and recall reading that it was not a good sign, but I just can't find it anywhere. I had micromets as well, but he wasn't worried as they were so small. Duh! micro you idiot!!!

    So, I am an anomoly. No treatment but surgery and prayer!

    Good luck. Keep us posted as you would have new info for us.

  • singlemom1
    singlemom1 Member Posts: 434
    edited April 2011

     thank you so much ladies for your replies and support! I just came from the doctor and it was clarified that I have invasive papillary carcinoma ( not Micropapillary). The Micro is more aggressive from what I am reading and hearing.   At this point, I am stage 2, but they did not check my nodes during surgery because they thought that I just had DCIS. They will have to go back in for the nodes but the stage thus far is based on the size being 2.9 cm. The doctor did inform me that invasive Papillary carcinoma is indeed very rare with less than 1% having this diagnosis. My doctor is presenting at a cancer board on Tuesday and stated she will talk to me then about the recommendations but stated that everything is back on the table including masectomy, chemo, radiation and Tamoxifen.

    This is a wonderful board and I am so glad I found it.  My support to all of you!!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited April 2011

    Good luck to you!  You sound like you have a terrific oncologist!  With our rare types of breast cancer it is very difficult to find exactly the right kind of treatment.  With "favorable" subtypes, like ours, you want to be careful not to OVER treat or UNDER treat.

    While you're waiting, I suggest you Google search the NCCN 2011 breast cancer treatment guidelines.  Afterwards, you can use what you've learned as a springboard for your beginning discussions with your onc!

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2011

    singlemom - I'm glad it's the ordinary one. I seem to be prone to getting rare bc - first HER2+ve positive lobular - which is rare, and then this micropapillary thing. I found out the micropapillary one can be found in lots of nodes. I did find one friend on here who had 18/28 nodes with it. I was node negative, so that is something of a miracle. Other than the threat of lots of nodes, it's treated the same as ordinary IDC. My baby (registrar) onc said they often don't report it, so it could be more common than thought.

    Sue

  • singlemom1
    singlemom1 Member Posts: 434
    edited April 2011

    thank you voracious reader that is great info for me to follow up on!

    Sue - I am so glad to hear your nodes were negative as I too had read that it is usually in many nodes!

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2011

    I'd had chemo for the first tumour in the other breast - it might have kept it under control - I am very lucky I reckon!!!

  • Maybe484
    Maybe484 Member Posts: 170
    edited June 2011

    I was just reading my path report from my recent re-excisional lumpectomy, and it says the residual cancer had cribriform and micropapillary features.  The original excision path report (at another hospital) did not mention that.  I'm freaking out now, especially since the tumor was in my right axilla, so close to lymph nodes and the skin surface.  It's 100% ER+ and 90-something% PR+.  I did have clear nodes (0/3) in my SNB.  I go to a university hospital breast center, but my surgeon didn't mention anything about this.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited June 2011

    Maybe - how big was it? It's great it wasn't in your nodes. My onc totally dimissed the whole micropapillary thing as the treatment is the same as for IDC - the many positive node risk seems to be the worst that can happen, so don't worry too much.

    Sue

  • bev1116
    bev1116 Member Posts: 7
    edited October 2011

    Hi singlemom1! I've been reading this board since I was diagnosed in June, but I just joined yesterday. I too was diagnosed with Invasive Papillary Carcinoma and DCIS. The tumor was 1 cm, .5 of that being invasive, the rest DCIS. As you can see from my signature I'm ER+/PR+, HER-. I opted for breast conserving lumpectomy since I had no other issues or risks. Because of the location of my tumor (11 'o clock on the left breast) my surgeon said it was cosmetically in the worst place possible, so I had the option of a plastic surgeon who did a breast reduction/cosmetic lift on both. My general surgeon followed his incision markups and tunneled in to remove the tumor. There was no node involvement. I had 33 radiation treatments following surgery, and I have recently decided not to take the Arimidex for 5 years. I haven't told my oncologist this yet; I will see her at the end of the month, and I hope I don't get too much blow-back over it.

    I'm curious to see how you've done -- since your first post I'm assuming you've completed surgery and rads if that was part of your care plan. I hope all is well.

    voraciousreader, with my odds of this returning being practically nil, I feel like 5 years on Arimidex is overtreatment, and will expose me to a lot of SE from which I may not totally recover. I already have high blood pressure, high cholesterol, arthritis in knee and hip, and osteopenia. I welcome any input on my decision not to take Arimidex.

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