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Papillary Carcinoma

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  • cuddyclothes
    cuddyclothes Member Posts: 98
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    Hi, panky -

    I did the 3 week protocol; I don't see why not. The side effects were minimal and the only one that's lasted is that my breast is slightly darker. You wouldn't notice it if I wasn't so pale. I'm not doing the AIs, though.

  • panky
    panky Member Posts: 11
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    Thanks cuddyclothes! I seem to change my mind every other day.  My doctors here in the Bay Area (Ca) seem to have a "don't overtreat" feeling (about DCIS at least, I also have EPC, but again, supposedly it's not invasive). My cancer is very strongly positive for estrogen so I'm being encouraged to go with tamoxifen and I did have really wide margins with my surgery because of the reduction.  My main fear with radiation is that if cancer comes back in that breast I couldn't radiate again and would have to have a mastectomy and if I wanted reconstruction it would have to be a flap. I know this is "what if" thinking, but that's what's mainly holding me back.... I have time to decide though, I have some wound complications from the two surgeries and they need to heal before starting any radiation.

  • Gami4415
    Gami4415 Member Posts: 3
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    Panky - I'm in the same situation. I'm facing the same decision. I don't want to mention this to the non-BC people in my life because it would make the decision that much more confusing. "Well I would..." "Well I would..." I would much rather talk with BC friends who know what the decision feels like.

    After researching it for about 3 hours this evening I'm siding towards radiation because it sounds like papillary carcinoma is pesky. I read things like "seeding" "little consistency between MDs Dx and treatment" and "papillary carcinoma is also prone to mechanical detachment and seeding of cancerous cells during needle biopsy". This all makes me want to take precautions from the unknown. Is it really considered "over treatment" if little is known how papillary carcinoma behaves?

    But I hear you when you mentioned recurrence. "What if"

    I'm going to be thinking about this all night. I wish there was a research study for papillary carcinoma so those that follow would have a trustworthy protocol to follow.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Can't remember if I mentioned this on this thread already, but when I was diagnosed in Dec 2008, there was only THREE hits on Google for Papillary Carcinoma! All about the same "83 year old woman presents with...." Amazing. Now it's better known, but not as much as other types. I recurred with Papillary so we know it can happen. I was told in 2008 that I was lucky it was "in situ" and was caught early.....right.

  • limnogal
    limnogal Member Posts: 100
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    Gami4415-I decided to do radiation, based on exactly the issues that you mentioned. Chemo was decided for me, based on my tumor grade (3) and low ER positivity (35%) and PR-....sigh....

  • limnogal
    limnogal Member Posts: 100
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    Gami4415-I decided to do radiation for exactly the reasons you mentioned in your post. Doing chemo was decided for me by my tumor grade (3) and scary-high Oncotype score...sigh...

  • Memily9
    Memily9 Member Posts: 10
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    hey all, I'm Emily, 33 diagnosed with stage 3a micropapillary carcinoma, while pregnant with my first baby. Nearing the end of my chemo. Doing really well surprisingly, just interested in meeting other survivors of this type of BC

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Hi Memily, you are not alone. Welcome to the club no one wants to join!

  • limnogal
    limnogal Member Posts: 100
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    Welcome, Emily-like Barbe says- to the club nobody wants to join. What chemo are you on?

  • singlemom1
    singlemom1 Member Posts: 260
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    Hi all,

    I was diagnosed with invasive papillary carcinoma in 2011. The doctors reported that they were very surprised as this type of cancer is usually found in older women. I had just turned 46 at the time and I guess in cancer world that is still considered on the younger side

  • obsolete
    obsolete Member Posts: 333
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    Hugs go out to all papillary sisters---- especially the young SingleMom1, who found herself here again with recurrent regional progression. You all remain in my thoughts and prayers.

    Have you read the book on biology-psychology, authored by Bruce Lipton PhD (summary at links below), entitled THE BIOLOGY OF BELIEF ?

    https://www.brucelipton.com/sites/default/files/pd...

    https://www.sfsu.edu/~holistic/documents/biology%282%29-1.pdf

    Papillary carcinoma remains misunderstood within the medical community, so it's more important that we each gain a thorough understanding of our bodies and minds.

    Best wishes...



  • cuddyclothes
    cuddyclothes Member Posts: 98
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    Hi, all -

    I'm glad this forum is here, even if I don't come around often. It is very weird how little there is out there about papillary cancer! Just stopping in. I might have a recurrence in my right breast, so I'm sort of preoccupied.

  • obsolete
    obsolete Member Posts: 333
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    Cuddyclothes, you poor dear with a rare possible recurrence. Hoping it's an innocent papilloma or similar benign buggers. Gosh, carcinoma on the contralateral side must be quite a frightening worrisome possibility. We all must keep one eye open for such nasty surprises ourselves. Hugs to you and please keep us posted on how you're doing. You are in my prayers, sister.


  • cuddyclothes
    cuddyclothes Member Posts: 98
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    Thank you! I'm having an MRI biopsy first thing Monday morning.

    Sad

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Good luck, cuddy, you are not alone....

    Hug

  • cfprincess16
    cfprincess16 Member Posts: 3
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    I'm not sure where I should post a question so I'm going out on a limb and putting it right here. I am 42 years old and last year was my first mammogram. I had a breast augmentation at 40 years old and there was never an exam done prior. That having been said, I had a mammogram, then US, then scheduled for a core biopsy. The surgeon was unsuccessful and sent me to a breast surgeon. I found out that evening that I'd lost my health insurance. It was 6 months later and the surgeon ordered another mammogram. That turned into another US, more mammography, core biopsy scheduled (I was told that there are 7 "clusters" of calcification and their planning to biopsy two). This time they were successful. The surgeon calls me in and tells me that during the biopsy, they saw a new suspicious area and did a biopsy of it also. This turned out to be a 4mm papilloma and an excision is scheduled. The surgeon tells me that if you're going to be told you have cancer, this is the type to have. It has a tendency to not spread.

    I have a network of dr's in my family and one has recently asked to see the biopsy report. I was shown the verbiage "in situ carcinoma or malignancy, high risk lesion". Then I was given the impression that this is much more serious than I was told. So I'm very curious to hear if anyone has experienced this and can help me understand?

  • cuddyclothes
    cuddyclothes Member Posts: 98
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    Papillary carcinoma is generally thought to have a better outcome than many other cancers. I had it last year, had a lumpectomy. Clean margins, no node involvement. Its rareness makes it hard to find out info.

    Rather than talk to your family, talk to your oncologist. That doctor will be impartial and answer all of your questions without any emotional baggage or worrying.

    Also, I took a friend with me to each doctor visit. She was able to write down what the doctor said (trust me, you won't take in much). I didn't know what "high risk lesion" means. There's a diagnosis board and you can ask there. I couldn't tell you what they said about mine unless I found the report.

  • singlemom1
    singlemom1 Member Posts: 260
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    Hi, so is it your understanding that you don't have invasive cancer? That is the first thing you need you need to clarify

  • melissadallas
    melissadallas Member Posts: 929
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    cfprincess, papillomas (benign "warty" type growths, common in breasts) as found on your biopsy are not the same thing as ratherrare papillary carcinoma. You need to wait for your meeting with your doctor to go over your biopsy path reports.

  • cfprincess16
    cfprincess16 Member Posts: 3
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    I have already met with my Dr. and gone over the results (which is why my surgery is scheduled). I have a copy in hand that reads, "in situ carcinoma or malignancy is identified".

  • singlemom1
    singlemom1 Member Posts: 260
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    in situ usually means it is non invasive, which is a very good thing. However, on my situation they thought in situ based on core biopsy until surgery showed invasive and in situ mixed together. I have sinced learned this is common for papillary carcinoma.

  • panky
    panky Member Posts: 11
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    Cuddyclothes, how did your MRI go? Clear, I hope!! Heart

    I decided to go ahead and do radiation- it was the 3 week "Canadian protocol", glad I did it. Now I'm supposed to start tamoxifen, though my oncologist seems very relaxed (still refers to my diagnosis as DCIS which kind of bugs me) about not needing to start it right away or anything. Problem is, I take prozac which you can't take with tamoxifen. Has something similar happened to anyone here? Did you need to change an anxiety or anti depressant med when you started tamoxifen, if so, any recommendations?

  • barbe1958
    barbe1958 Member Posts: 7,605
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    panky, I asked my RO about the "Canadian protocol" and he has no idea what it was!!!

  • cuddyclothes
    cuddyclothes Member Posts: 98
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    Hi, panky!

    I take Zoloft as an antidepressant. I couldn't tolerate Prozac.

    The MRI biopsy revealed that everything seems to be okay, but there are some abnormal cells. So I'm going have surgery in mid-July. It's very probably not going to be cancer; the surgeon sounded quite upbeat.

  • cfprincess16
    cfprincess16 Member Posts: 3
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    I am 2 days post-op. They've done an excisional biopsy and awaiting pathology report. I was mortified when I saw the incision. I guess I assumed it would be fairly small and this was not the case.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    How are you doing now?

    Weird to discuss but I've been surprised by the use of the word "mortified " lately. It means embarrassed or at least used to. But now I see it used to show other emotions. When did they change the rules?

  • cuddyclothes
    cuddyclothes Member Posts: 98
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    cfprincess, what was the excisional biopsy like?? I think that' s what I'm going to get. Did you have general anesthesia?


  • obsolete
    obsolete Member Posts: 333
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    Cuddy,

    Your excisional biopsy should go smoothly, and depending upon where exactly and how deep your surgeon needs to explore, it would possibly be classified as a simple excision. Papillary lesions under 5mm are not always seen in MRI's or ultrasounds or diagnostics.

    An excisional biopsy is generally the preferred biopsy method for papillary patients because encapsulated papillary is often "cystic" (cystic/blood fluid), and thus could be under pressure when opened. Any invasion is often on the outside periphery of the tumor, as was in my case. My excisional biopsy was similar to a modified lumpectomy, where anesthesia was used because I also had sentinel lymph nodes removed at the same time (so they wouldn't have to remove the sentinels separately). A FNA (fine needle aspiration) had found mixed subtypes of invasive cells in the mix, in my case, together with the papillary tumor.

    Some patients with larger papillary tumors also elect to have the nipple/areola area removed at the same time, because this is typically where any escaped cancer cells could possibly be residing (but not always).

    My excisional was a very painless out-patient surgery, but I would think the location and size of the target area would be factors. With having exploratory biopsy with abnormal cells, your process sounds far less complicated.

    Did you ever experience any physical injuries to your suspect areas? Best wishes to you and please let us know how you make out.

  • cuddyclothes
    cuddyclothes Member Posts: 98
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    Thanks! The surgery is tomorrow. I appreciate all of the information. I don't know if this go-round is papillary or not.

    No physical trauma to speak of. Cancer doesn't just run in our family, it gallops. So this is sort of not surprising. But it still sucks.

  • Tanya222
    Tanya222 Member Posts: 9
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    Hello ~ I just got diagnosed Wed Sep 7th with papillary carcinoma. I was told over the phone, but wasn't told grade or stage or anything more detailed. I've already had a biopsy and been worried ever since about "seeding", I don't know if it is/was encapsulated or not, I hope I didn't shoot myself in the foot with that biopsy, I don't even know if it was a "fine needle" or "core" needle type... I have so many questions and I don't even know the questions to ask my doctor, I had no idea there were 2 types of needles and that they make a difference? Anyway I meet with a surgeon on Tuesday, I'm guessing they'll be wanting to rush me into surgery on this..


    I have a history of BC - my mother died at 53, it started as BC and spread to her liver.. but she had had repeated injuries to the site (briefly, she worked in a factory making hoses for car parts and she would repeatedly be hit on the side of the breast as they came out of the machine, she didn't get a guard or anything even though it was union, she was entitled).... she went through the whole nonsense of chemo/radiation/surgery for a good year or so, it didn't cure nothing, so you can kinda tell it left me with a bitter taste in my mouth so to speak. I remember thinking that if I ever had cancer I would not put myself through chemo or radiation - if it cured anything I'd still have my mother.. my personal belief is only your own immune system can cure, so why would I weaken my immune system like that?


    I found the lump myself; going by what I remember feeling it felt like about 1cm - is that bad? Is that big? I see some of you have been found with "3mm", sounds so much better, if mine was 1cm or bigger that can't be good can it? I had a heckuva purple/blue bruise from the biopsy, 2 weeks later it's morphed into green to yellow, all shades of the rainbow really.


    At first I'd declined the mammogram as I've read they cause cancer - but I just had one Thursday so the surgeon can have the results (hopefully) on Tuesday. I hope the squishing at the mammogram didn't causes more damage/seeding, whatever. Can you tell I'm analyzing every little thing I do? Like I said I don't even know what questions to ask the doctors!


    And if you asked anybody who knows me they'd say I eat the healthiest of anyone they know.. vegetables up to the eyeballs, salads every day, garlic enough to ward off vampires, etc (ok they're not organic, but still, I'm not living on junk food here!) Been using handmade all-natural deodorant for years, can't remember the last time I used antiperspirant. Biodegradable laundry soap. Never touched a cigarette in my life. I'm already switching some foods to organic.


    I keep analyzing "where I went wrong"! Genetics, ok. Can't I overcome genetics?! P.S. I'm 39.