Papillary Carcinoma

BD74
BD74 Member Posts: 1

Hi everyone,

     My mother was recently diagnosed with a 12mm papillary carcinoma.  Apparently the imaging suggested no definite signs of invasion (but included an encapsulated cycstic papillary carcinoma). A lumpectomy is scheduled in the next two weeks, at which point I guess we'll hear more.  They're already planning to do a sentinal lymph node biopsy.

My understanding is that this is a pretty rare form of DCIS.  Are there any differences in treatment plans that any of you know of that are associated with papillary carcinomas?  I guess I'm just trying to compare the parts of the story I've heard on my end from what I read on the internet, which ranges from hopeful to scary...

Best wishes to all of you.

-BD  

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Comments

  • moderators
    moderators Posts: 6,946

    Hello BD, and welcome to BCO.

    Until other members post their experiences and insights, there are several threads in the forums where others diagnosed with papillary carcinoma have had previous converstions - look for them, if you like, with the Search function from its link near the top right of any page.

    Also, the main Breastcancer site has medically-reviewed information that may help you, at this link: IDC Type: Papillary Carcinoma of the Breast.

    Judith and the Mods

  • Shayne
    Shayne Member Posts: 524

    i also was dx with an encapsulated papillary carcinoma 12mm..... no invasion - I am having lumpectomy but no lymph node biopsy as it was contained.  I also have microcalcifications, one small group that was removed at biopsy.   From all that I have read, it is rare, but have better prognosis than others.  I will have rads and not sure about meds, will know more after my surgery path report.  

  • Shayne
    Shayne Member Posts: 524

    Just want to add - NOT ALL papillary carcinoma is INVASIVE.  Mine is not.  The initial biopsy path report should say whether it is.  It will be treated differently if it IS invasive.  When i saw mine on the mammo, US and MRI - it looked like a smooth cyst.  Even my docs thought it was a cyst as I had another benign cyst right next to it.  Encapsulated means it is in a little protective cover.  contained.  Yes, it is rare, but like I said, from what I read in SUSAN LOVEs BREAST BOOK - it has a great prognosis - better than IDC or other invasive cancers.  Its rare because they dont see it often, but are seeing more of it due to new digital mammos....Keep us posted please on your moms upcoming surgery and path.  Im very interested to find out how it turns out.  Best of luck!

  • dressager
    dressager Member Posts: 2

    i also had papillary carcinoma and it was the first one my breast surgeon had seen. it is a relatively "well behaved" cancer but even encapsulated cases get SNB in some cases--i did, unfortunately. perhaps if my surgeon had seen more of them, she wouldn't have pulled nodes. :-(

    the prognosis can be excellent. my understanding is that chemo is not recommended for this type of cancer--but rads/medication therapy are. good luck to your mom!

  • kuchagirl
    kuchagirl Member Posts: 5

    I was diagnosed with intracystic papillary carcinoma in January 2007.  I'm glad we have our own category.  Everything that I can read tells me that it has a very good prognosis, even at 10 and 15 years out.  I just passed the 5-year mark.  Had lumpectomy, 5-day radiation and 5 years of tamoxifen.  My naturopath told me she thought I was "aggressive" in some of my choices, especially the radiation, but all others docs in my life think I was prudent.  I'm doing great in most ways nowadays.  It was just a bump in the road, as one of my oncs suggested, although back in 2007 I hated that she said that.  Now, in 2012, I can see the truth in it.

  • Shayne
    Shayne Member Posts: 524

    Finally saw my MO and talked about this type of cancer.  She had 3 patients with the exact same dx as I did.  She said it is still NONinvasive, still dcis.....no different treatment plan is in order.  And she seemed pretty lax on whether I chose to take hormonal therpy or not......

  • Shayne
    Shayne Member Posts: 524
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  • barbe1958
    barbe1958 Member Posts: 7,605

    Shayne, DCIS is in the ducts. My Papillary Carcinoma was at 6 o'clock on my chest wall and no where near any ducts. I was told it would be treated as IDC. When I Googled it 3 1/2 years ago there was only ONE story on Google about an 83 year old womean who had it!! Freaked my surgeon out, that's how rare it was even just that recently. I think it's being recognized more often. Mine was contained and non-invasive - at the time - but it can be invasive. It is NOT DCIS. If your doc continues saying that, I'd get a new doc!! She may be trying to say that because your sample is non-invasive it's LIKE DCIS. But really, I'd call her up on that.

  • Shayne
    Shayne Member Posts: 524

    Mine was IN the ducts....so it IS dcis.  It was also encysted papillary, meaning it was encased in a shell.  Some are not.  Even the pathologists characterized it as dcis.  It showed no signs of invasive cells either.  She has been a MO for 30 years - i trust her completely.  And the pathologists were a top notch lab.

  • barbe1958
    barbe1958 Member Posts: 7,605

    Hmm, I didn't have RADS, got lucky on that one. Too bad you have to continue with treatment Shayne, but so important that trust you speak of!! My Onc even told me I was stage one, so I know it was recognized as IDC and not DCIS, but it DOES have a very good prognosis as it is a very slow growing cancer (as the ER+ indicates, as well).

    Now, BD74, as you can see, your post was very interesting to a number of us. DCIS can often surround an area of IDC, that is very common. The problem is, the treatment is slightly different. I had a SNB which you normally wouldn't get with just DCIS. A mastectomy is often the recommendation with both DCIS and Papillary Carcinoma. Please let us know how your mother's appointments go as we learn so much as new members join us, as I did from Shayne!

  • Shayne
    Shayne Member Posts: 524

    Think depending on the stage, grade of tumor and of course, where it is, determines if they do SNB.  Mine was stage 0.  Mx not recommended.  I did rads and just started Hormone therapy.  Good luck!

  • barbe1958
    barbe1958 Member Posts: 7,605

    Shayne, that's great!! But I'm confused....so many women with DCIS get a mast, ALMOST all (I did not say 'all'). If you go to their sites on here you'll see that. I've always wondered why the lowest stage gets the most dramatic treatment. They also don't know your stage until after surgery so you were lucky to avoid SNB!! Perhaps if I got my diagnosis today I could have avoided my double mast....sigh. But, having said that, I didn't want rads right over my heart, because, as I said, my tumour was at 6 o'clock on my left breast and I didn't want to compromise my lung or heart.

  • Shayne
    Shayne Member Posts: 524

    Fear plays a factor Im sure.  But all my docs agreed that for my case, caught early and as small as it was.....MX would have been overtreatment.    And rate of recurrence is same mx vs lx +rads for dcis.  I also had internal rads, no SEs.  Everyone has to chose what they are comfortable with, what will let them sleep at night.  

    Also, a lot of women test positive for the BRCA gene - that would make one chose mx as well. 

  • bhlri
    bhlri Member Posts: 13

    Hello ladies, yet another newbie :) 34 yrs, got Dx last month. I have a 3 yr old and were planning for the second one. Brakes to that now :). BMX scheduled next week. It took a while to get to that decision. I was hesitant to remove the other healthy one. But after 3 opinions decided bilateral it will be. I was told as I have dense breasts which makes it tough to find things in self exam or US at an early stage. Although mine is papillary kind which is low grade, I am still worried. Nice to see others who have beat it :) gives me hope and strength. Anyone know about recurrence rate of papillary kind ? Thank you all. Xoxo

  • Shayne
    Shayne Member Posts: 524

    I have a non-invasive type of papillary. From what Ive read, even the invasive type of papillary carcinomas have a better prognosis that other invasive bcs.  Good luck with your upcoming surgery!

  • Odyssea
    Odyssea Member Posts: 1

    Hi Ladies- Last month I was diagnosed with a local recurrence of invasive papillary carcinoma after having received an Oncotype dx of 0 in 2008. I honestly thought I was done with cancer- huge shock to learn I had a reccurence after 4 years. I was unable to tolerate Tomaxafin after my dmx and had to stop after a few months, so that may have been the cause. Lumpectomy is scheduled for next week (caught recurrence early - .5 mm) but that will be the easy part. There is very little information regarding treatment options for local recurrence of Papillary Cancer because it so rarely comes back and I am just not sure what road I should take. Anyone out there have Papillary Cancer show up a second time?

  • barbe1958
    barbe1958 Member Posts: 7,605

    Wow Odyssea, where did it come back and how did you find it?? I thougt we were pretty well in the clear. Are they sure it's a Papillary recurrence and not a new primary? Pleae keep us posted. I've been off the boards for a bit, but will keep in touch to hear your results. Good luck, sweetie!

  • Orangetree
    Orangetree Member Posts: 2

    I was diagnosed with papillary breast cancer, stage 0, DCIS in 1994.  Relapsed in the bones and lung in 1999.  Had surgery on lung and radiation to the hip and pelvis.  I was stable on Arimidex then for 11 years.  It just came back in my liver.  My advice is to always be on you guard - even stage 0 can rear its ugly head after many years. I am reading about discordance and how cancer can change so I am asking for a biopsy to check for that. 

  • rowan47
    rowan47 Member Posts: 64

    God, I'm so sorry Orangetree. What a bloody awful shock!!!! Please let us know how you get on with biopsy. Hope you don't mind me asking, but did you have symptoms with bone mets?? I have been short of breath for about 8 months, had clear chest x-ray, but have now had sore lower back and ribs for 3 weeks. Have never had any type of scan, so wondering if MRI might be good idea?

  • barbe1958
    barbe1958 Member Posts: 7,605

    Orangetree, what a shock!! My heart goes out to you, you must be pissed. I've had uptake on my bone scan for a couple of years now, but they keep insisting it's arthritis. How do they know??? I'm on a cane all the time now...

  • Orangetree
    Orangetree Member Posts: 2

    Remembering back to 1999, I had bone changes on my MRI way before I felt any pain.  It wasn't enough pain (pelvis and and hip) to stop me from my normal routine.  In fact, I was mowing the lawn the day before I saw my doc and bone scan/MRI results.  My doctor told me that I should have been feeling MORE pain than I was having.  Then I was put on crutches while going through radiation to make sure I didn't do any more damage.  I'm sure that eveyone feels pain differently and I would certainly have any pain that doesn't go away checked out for sure.  I still don't have anything in my hip or pelvis pain-wise that keeps me from doing what I want to do.

  • barbe1958
    barbe1958 Member Posts: 7,605

    I have Fibromyalgia which exacerbates pain, so I'll always feel MORE pain than there really is. VERY hard to live with. I'm on 150 mgs of Morphine a day!

  • annika12
    annika12 Member Posts: 92

    They found my carcinoma with papillary features in my armpit lymph node....anyone else??? Not done with all testing so I dont have a stage or numbers yet....doc told me chemo and surgery but no details. They are still looking for source

  • barbe1958
    barbe1958 Member Posts: 7,605

    Annika, are you saying you have no lump in your breast? Hmm, keep us posted on what they find!

  • annika12
    annika12 Member Posts: 92

    Yes they have not yet found anything in my breasts!!! Had MRI saturday and hopefully when doc calls me at 3:30 she will tell me they found it. I have dense breasts with lots of cysts..... kinda strange to want them yo find cancer but since my node is positive I all ready know I have it.

  • annika12
    annika12 Member Posts: 92

    Still no primary!! Should have results of last two surgical biopsies tomorrow but talked to oncologist today who says either way it will be treated as breast cancer chemo first then surgery. Trying to get ready....

  • barbe1958
    barbe1958 Member Posts: 7,605

    Annika, what will they do for the surgery? Your nodes? Please ask them this one question. Papillary carcinoma is known to be slow-growing. Chemo acts on fast-growing cancer. Will it really benefit you to have chemo? It's like shooting off a shotgun without aiming at a target. The scatter of the shotgun pellets might hit something, but then again...it might not. The GRADE of the cancer, 1-3 tells of it's speed of growing, so if you were grade 3, then chemo would make sense. But without knowing grade....how do they know? I hope my question doesn't anger you, but to just do chemo for the sake of it, doesn't make sense. I had NO chemo.

  • annika12
    annika12 Member Posts: 92

    A little late answer lol!! It did come back grade 3 and I think chemo was needed due to the node involvement. I have had 4 AC and my node tumor is gone to the touch...having ultra sound on Thursday. Started taxol and herceptin then surgery in dec. followed by radiation!!

  • barbe1958
    barbe1958 Member Posts: 7,605

    Nice to know that the chemo is right for you!! But such a long time until surgery? Why so long?

  • annika12
    annika12 Member Posts: 92

    I'm done with chemo a week before Thanksgiving, then a couple of weeks recuperating getting strong for surgery :)