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Papillary Carcinoma

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  • obsolete
    obsolete Member Posts: 333
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    Babby, welcome to the papillary thread and it's good to hear that you survived your very unfortunate experience and that you are better. I'm curious if you had an oncotype dx assay and what your oncotype score was? My oncotype score was 8 and my papillary tumor was 30mm, about average for papillary carcinoma. Most papillary gals don't respond to or need chemo due to low oncotype scores and usually lower grade cancers. If your papillary had an aggressive conventional component, maybe that's why you were given chemo? You are blessed to have survived your difficult chemo experience. It's sad that you had to spend so much time in the hospital and my heart feels for you.

    Did you have a conventional invasive component, such as IDC-nos and/or DCIS associated with your papillary tumor? I had IDC mixed inside the papillary tumor with mucin, but I also had both DCIS and multi-focal invasive mucinous carcinoma sitting outside the papillary tumor that was infiltrated with IDC-nos. My papillary tumor & DCIS were both high-grade 3 with a fast mitotic 3 index, but my invasive mucinous and IDC-nos were the opposite low grade. We assume you had higher grade cancer to have had responded to chemo? Was your papillary tumor mixed with part conventional IDC?

    None of my cancers showed on DX/3D mammography, although the papillary lump was palpable. Being that your DX was ER(+) and PR(-), did this imply you maybe had a luminal phenotype B tumor, which are known to be more aggressive?

    Papillary tumors can be covert multi-centric multi-focal little buggers, so it's good you're getting MRI screenings. You didn't by any chance have an injury to the site of the tumor before the cancer occurred? Yeah, I did, and a few others on these boards did also. Hugs to you for better health moving forward.




  • Jones812
    Jones812 Member Posts: 3
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    Was just diagnosed with papillary carcinoma... And I'm young. Only 32. The doc was absolutely shocked. They were 99% sure it was a Fibroadenoma. She had me scared to death when she said it was so rare, but the prognosis actually seems pretty good for it being the "1%." I'm waiting for a call from the BS to get the mass removed and then I'll know what I'm working with here. Thank goodness I do self exams and found this lump!!! Just trying to stay positive right now but this has been so deflating.

  • obsolete
    obsolete Member Posts: 333
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    Hi Jones, a warm welcome to the papillary thread. So sorry that you're so young! It was many years ago when my best friend, at about your age (30-31), was diagnosed with grade III IDC, and she's still cancer free. I remember how hard she took it, although breast cancer ran in her family.

    My advice to new papillary members is to insist on a MRI scan to spot any possible papillary tumors (because papillary lesions can be multi-centric) or possible invasion, such as mucin which typically does not show up on ultrasound and mammograms.

    Did you possibly have an injury at the site of your tumor? (Some of us did.) Best to you and please keep us posted how you're doing. Many hugs.

  • Jones812
    Jones812 Member Posts: 3
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    WeAreConnected- no injury to the site!

    I have my appt in two days so just thinking happy, positive thoughts that it hasn't spread anywhere.

    I had read about the MRI elsewhere, so thanks for the heads up. I will insist on one.

  • NATSGSG
    NATSGSG Member Posts: 64
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    hello ladies:

    Hope this message finds everyone well....I just wanted to share this link that contains 22122 scientific articles of papillary carcinoma with you that I hope may be of use.

    http://www.ncbi.nlm.nih.gov/pmc/?term=Papillary+carcinoma

    You may need to find the ones of interest to you...and if you are interested, you may even write to the Society for Immunotherapy for Cancer to see if they have started using immunotherapy in the treatment of this disease? Here's their link. Also may wissh to consider having them add you to their distribution list so you can receive the latest updates and info?

    http://www.sitcancer.org/sitc-meetings/presentations?utm_source=Email&utm_medium=April%20IM&utm_campaign=IM%20PL%20edu%20Opps

    P.S.

    This VIDEO link talks about the use of immunotherapy in cancer treatment and fascinating to watch.

    http://videocast.nih.gov/summary.asp?Live=15875&bhcp=1 

  • obsolete
    obsolete Member Posts: 333
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    Greetings Nat, thank you for posting your informative links and brilliant resources. I also wish you the most pleasant journeys ahead as we support, educate and help one another progress thru our various BC experiences. Because there aren't too many of us with papillary, as you know, this thread is lightly populated. But on behalf of all papillary patients, we thank you kindly because it's patients like you who are helping rarer BC patients lead the way to better understanding of special subtypes. My own doctors don't fully understand papillary because they rarely see it with invasion.

    Your first link drilled down to an interesting article on 22 papillary cases and genetic pathways with invasion and infiltration, where the pathology images on page 12 looked similar to my own past presentations (papillary mass at left, and membrane with infiltrating IDC and DCIS encircled to the right), minus the invasive mucinous/colloid carcinoma which was adjacent to and beyond the tumor. Link below. Very informative research on these rare special cancers, so thanks again. Best wishes always.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4389629/pdf/nihms-676184.pdf


  • Jones812
    Jones812 Member Posts: 3
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    I had my lumpendectimy last week, and I am waiting for final path report. The initial says the tumor favors in situ, but need more results. Radiation is the only thing that has been discussed with me before. My question is- does anyone know if radiation would still be recommended for invasive papillary? My MRI came out clean- no node involvement, no other tumors. Due to other health concerns, I'm scared to death of chemo. I'm hoping either way the course of action would still be radiation.

    Thank you!

  • Shayne
    Shayne Member Posts: 524
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    mine was dcis - I was lucky

  • obsolete
    obsolete Member Posts: 333
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    Good for you, Shayne! I pray that you and all the other papillary ladies are all doing well? What grade was your DCIS? I understand some papillary growths are well-behaved and others are not. The problems I see is there are still controversies in medical studies on these papillary subtypes with little consistency between MD's in dx and treatment. How are your treatments going?

    I had DCIS both times (Grade 2 & then Gr3 2nd time) also, or that's what I was at first told. But not limited to DCIS, unfortunately. What we thought was just a bit of microinvasion the 2nd time was true multi-focal invasion. Apparently pathologists and oncologists are not too familiar with the various types of papillary presentations with different types of invasive components, plus there's lots of controversy in defining invasion associated with papillary tumors. 2 pathologists even missed some conventional IDC invasion that was present in spots surrounding the papillary tumor the first time.

    Actually it wasn't until we got pathology reports # 3 & 4 from different labs did we learn that my tumors had a mix of other subtypes of multi-focal invasive cells, some sitting outside the papillary tumor, and some sitting inside the shell of the papillary. These papillary lesions are not always the happy-go-lucky well-behaved tumors that lots of literature and some doctors claim they are. No way. They can sometimes be nasty too.

  • Kolekea48
    Kolekea48 Member Posts: 2
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    I am 67 years old and I was just diagnosed with papillary carcinoma, literally, 3 hours ago. I am not even sure how large the lump is, but I do know that it is encapsulated. At this point, that is the extent of what I know. Hopefully, will be seeing specialists in the next day or two. Needless to say, I am still in a state of shock, and quite numb all over. After a good cry, I decided that I needed to move forward, immediately, and start getting as much information as I can about my situation. I am overwhelmed by all that I feel I need to understand...and I am not sure where to even begin! So I thought I would first find a forum of individuals who have been where I am right now, and who have experience and who might be able to guide me as to where I go from here. Any suggestions or advice would be greatly appreciated.

  • obsolete
    obsolete Member Posts: 333
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    Kolekea, a warm welcome to the papillary carcinoma thread, and I think I can empathize with you. I remember how scarey it felt in the beginning, but please remember you are not alone. There are lots of strong sisters with endearing support and powerful experiences who are here to help you along your path. I promise you will feel better once there is a treatment plan in place. I sent you a PM (private message) if you should have some specific questions or concerns regarding papillary carcinoma. Since it's a 1% cancer, there are fewer members on this board than with other subtypes of cancer. Hugs to you!

  • moderators
    moderators Posts: 8,287
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    Kolekea, welcome! You've definitely found the right place for support and information! Our wonderful Community will be an incredible resource for you.

    Welcome and please let us know how you're doing,

    --The Mods

  • moderators
    moderators Posts: 8,287
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    Kolekea48, we've been thinkking about you -- how are you doing?

    --The Mods

  • Kolekea48
    Kolekea48 Member Posts: 2
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    Thank you, so much, for thinking of me. It has been quite a roller coaster ride these past few days. I had my first doctor appointment on Friday, and now that I have my "team" identified, and we are beginning to develop a plan of action, I am feeling much better, as others have told me I would. I am still feeling very overwhelmed, and confused by all the information I am receiving, but I am taking it one step at a time...and I do a lot of deep, controlled breathing! I have learned so much just by reading posts on this discussion board. Everyone here is SO helpful, caring and understanding. And I think that right now, that understanding and caring is what I need the most. Thank you!

  • Saltwithsavor
    Saltwithsavor Member Posts: 3
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    New here..just trying to get my head around all the grades, stages, types, sub types, etc.etc. I've had two chemo treatments with two neulasta shots..waiting on dx testing..second cancer for me. Renal cell my first in 1996. It was stage 3. Beat it. My ki-67 is 71 % doesn't sound too good. Would like input about the recurrence rates and prognosis.

  • Saltwithsavor
    Saltwithsavor Member Posts: 3
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    I understand the overwhelming feeling of it all..prayer

  • moderators
    moderators Posts: 8,287
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    Saltwithsavor -- welcome to you! You've found an incredible source of support and understanding here. Our Community is amazing!

    Congrats on conquering your renal cancer diagnosis -- we have faith you'll do the same with this new diagnosis, too!

    To help you better understand the diagnostic terminology and what your diagnosis means, you may be interested in reading up on the main Breastcancer.org site's section on Your Diagnosis, which walks you through what each piece of your pathology report means.

    Also, if you're continuing on chemotherapy treatment, you may want to join our other members going through chemo right now in the August 2015 Chemo Group thread. There're a bunch of helpful, supportive members there, just waiting to welcome you!

    We hope this helps! Please continue to let us know how you're doing!

    --The Mods

  • obsolete
    obsolete Member Posts: 333
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    Greetings Salt, sorry you find yourself here amongst us with a 2nd cancer, but you'll never be alone in this supportive community.

    Your dx is rather interesting due to it's extreme rarity. TN (triple negative) phenotype is highly unusual in invasive papillary, but probably more characteristic of invasive micropapillary carcinoma, a different disease, or in conventional IDC (nst). You might wish to ask that your doctors further explore the architectural features in your affected nodes and possibly obtain 2nd opinions on your pathology to confirm the invasive component and also identify any pseudo-papillary cells.

    If you do a search, there are different threads on TN, conventional IDC and micropapillary types. Best wishes to you in your recovery and treatment, and please keep us posted on how you're doing.


  • cuddyclothes
    cuddyclothes Member Posts: 98
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    Hi -

    I have papillary cancer in my left breast. It was very small, lumpectomy with clean margins, no node involvement, Oncotype score of 3. I just finished 3 weeks of radiation. It was the protocol where you in effect get a "double dose" each time.

    What amazes me is that I was given a breast cancer book by Elisa Port, a well-known surgeon at the Dubin Breast Center at Mt. Sinai, NYC, which is where my MO is. It doesn't even MENTION papillary cancer, not even in the "rare cancers" chapter! It's been frustrating to have a rare cancer. Partly because other cancers are so different, which makes it hard to share experiences on a level playing field.

    I know that last sentence was completely incoherent. Apples and oranges, I guess is what I mean.

  • Shakapuppy
    Shakapuppy Member Posts: 2
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    Well I guess it's time to join this rare group. Mammogram/Ultrasound on Nov 27 came back with BI-RADS of 4C. Biopsy Dec 10 came back as papillary carcinoma. Preliminary results came in quickly and my Dr. called and gave me results at 4:55 pm on Friday (11th) -- leaving me the weekend to ponder and research something I knew nothing about. Monday the 14th got a lot of help and information from the Navigator RN (for the pre-diagnostic part), and during the week got set up with a Nurse Navigator that will be my liaison through the rest of the process. The rest of the pathology report took until mid-week to complete and the NN called me with the ER/HER2 results. . Haven't seen the full pathology report yet, but at least I know ER+, HER2-.

    Don't know size or stage although it was quite easy to spot on the ultrasound. It did change size during the biopsy. They said they were pulling fluid out of the area. They left a marker in there so hopefully it can be found again.

    Now waiting for appointment with surgeon on Dec 22.

    Merry Christmas.

  • cuddyclothes
    cuddyclothes Member Posts: 98
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    Shakapuppy, good luck! You should look at the boards about getting diagnosed, etc. It is a bit strange having such a rare form of cancer. But the prognosis is usually very good, I gather.

    The markers will help them find it again. When you get your pathology report, look for the grade and the stage. If you don't know where to look, ask the Navigator RN or the other person. They'll also tell you what it means. As you can see below many of our entries, various stages, sizes, and treatments are listed.

  • Shakapuppy
    Shakapuppy Member Posts: 2
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    Thanks Cuddyclothes, I've been reading articles and learning this new lingo in preparation for the appointment tomorrow. I'm finding myself quite nervous now -- something that I haven't felt at all for the past 10 days since being told the definitive C word. Mostly I'm trying to make sure I can discern the differences between the subtypes and the nuances.

    Undoubtedly I will have many more answers tomorrow and many more questions as well.

    Not looking forward to the journey, but very glad I'm not alone.

  • cuddyclothes
    cuddyclothes Member Posts: 98
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    Don't worry about understanding the nuances. A good medical oncologist will help you understand terminology, staging, etc. It's important to take an Oncotype test, and there's another genetic test (which I haven't taken yet) that determines something about recurrence but I can't remember what. Your doctor will explain.

    I understand your anxiety! It's hard to grapple with all of these unknowns. I was first diagnosed in July after first finding out I had to have a core biopsy in May. Every step has been frightening. All you can do is keep going forward, and look for as much support as possible.

  • Dragonflies
    Dragonflies Member Posts: 5
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    Good morning...glad to have found you all. My Papillary carcinoma was found on screening mammogram in Nov, 2015, left breast....about location 11:00 :Additional scans and screening , plus core needle biopsy determined dx. Met with my surgeon to discuss results Christmas Eve. Met with my tumor board in early January...Lumpectomy and SLNB two weeks ago. Meeting with my medical oncologist Friday. I will then find out results of oncotype testing to determine adjuvant therapy...though I am fairly certainHappy it will be at least radiation and hormone therapy. For an unusual cancer, I appear to be fairly standard, except my cancer was in clear cells, suggesting a renal metastasis. Additional testing confirmed positive ductal origin. It is Invasive, tumor size removed was 2.5 cm, Stage IIa, grade2, ER+, negative nodes, wide clean margins. I am praying to avoid chemo and with no lymph involvement, may be a candidate for brachytherapy. I will know more soon. advice, suggestions, recommendations???

    DX: IDC: Papillary Carcinoma (Solid and Invasive with Clear Cells); Left, 2.5cm/surgery, Stage 11A, Grade 2, 0/3nodes, ER+/PR-/HER-

    Surgery: 01/14/2016 Lumpectomy, Left; Lymph node removal: Left, Sentinel

    Treatment: will update


  • moderators
    moderators Posts: 8,287
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    Hi Dragonflies, and welcome to Breastcancer.org. Sounds as though you will know much more on Friday about your treatment. Not knowing details is really difficult, we understand. Hang tight till you hear from your Medical oncologist, and take care of yourself. There is a ton of advice on the boards to help guide you through!


    Medicating

  • rowan47
    rowan47 Member Posts: 64
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    Hi dragonflies, your stats are almost identical to mine!! I had invasive papillary carcinoma, 2.5cm, stage 2a, grade 3, ER+, node negative...oncotype testing not done here in New Zealand (can have it done in USA but cost to me would have been $7,000) and because of aggressive grade I was recommended chemo. Had 2 lumpectomies then BMX few months later. Did the chemo, but declined rads and hormone therapy. 4 years later, still in remission and feeling fine, albeit tired :)

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Hey dragonflies! Welcome to the rare club. Papillary Carcinoma is less than 2% of all breast cancers. In fact, some people will argue that you don't have cancer as a papilloma is a benign growth and they get confused. When I was diagnosed in 2008 there were only THREE articles on Google to read and they were all about an "83 year old woman who presents with...". Now there is so much more info to read. I'd never heard about the "clear cells meaning renal metastasis". How did you find that out?

    My surgeon actually brought the Google article to show me just before surgery. Too funny, eh?

  • Dragonflies
    Dragonflies Member Posts: 5
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    Thanks; glad to have found your group. I am looking forward to learning a lot! I was told that not only is this an "unusual" cancer, but rarer still in my ethnicity. I've had to explain the diagnosis. In addition, there is NO breast cancer in my family/either side...back 3-4 generations that I could find out about. The only box I could check was post-menopausal. I am sure there's more to be learned.

    So, "clear cells"...my surgeon and path report explained this to me: "Because of the clear cells, gross cystic disease fluid protein and mammaglobin were performed, and gross cystic disease fluid protein does show focal positivity, supporting mammary origin. Mammaglobin is negative. These were performed to exclude possible metastatic renal cell carcinoma. E-cadherin is strongly positive, confirming ductal origin." So...there's that. ;-)

    All this was apparently confirmed by a second lab which also did a FISH after an equivocal HER2 IHC.

    At the time of my surgery, I had a biozorb tissue marker inserted in area of removed tumor. This is something that's been used in Europe for a while but newer to States. It is a helix shaped clear tubing (small) that has titanium markers placed along the spirals at various intervals. This is cut to size of tumor and sewn into place at time of lumpectomy. It is a direct focal point for radiation..X marks the spot. The clear tubing dissolves within two years; but, the markers remain forever...to assist with future screenings, etc. I am also told that it helps prevent nipple inversion.

    I will post once I visit with my onc tomorrow and learn results of oncotype testing.


  • cuddyclothes
    cuddyclothes Member Posts: 98
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    Dragonflies, good luck with your results! Papillary cancer tends to have a good prognosis. Whenever I've met other women having radiation, or gone to BC support groups, etc., I am the only one with PC. I'm not doing hormone therapy, but that's a personal decision.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Less than 12% of breast cancer is inherited, so that cuts the odds a lot! Please keep us posted on what you learn, you, too, cuddyclothes.