Hi, noodlesmom! I'm a little late to answer your question, but I was diagnosed with Papillary Carcinoma in July and I'm 47.
singlemom1-it is nice to have company! By IH, I was PR negative, but my ER percentage was positive. Low (35%), but positive. On the oncotype, I was ER negative. It seems like a low PR percentage tends to be associated with a high oncotype. *sigh*
I have met with a team of specialists including the breast surgeon, a radiologist, oncologist, and genetic counselor to discuss options. This type of cancer can be associated with genetic mutation, and not just the obvious BRCA genes. My genetic testing is being expedited as positive results may influence treatment decisions. Did anyone else get genetic testing? Admittedly, I had risk factors by dint of family cancer history, but I think the testing is worthwhile given how rare the cancer type is and the paucity of information. Anything, even ruling out stuff, is helpful at this point. The breast surgeon had originally planned a sentinel node biopsy along with a lumpectomy, but has decided to forego the sentinel node until they have better information on the tumor. I don't want to potentially lose a bunch of nodes if the lesion is in situ. From what I gather, there is a significant chance it will be upgraded to invasive, but no one is sure. Right now they are not recommending chemo or endocrine therapy but are recommending a short(er) course of radiation. I honestly don't want to have radiation as the lesion is right over my heart. I know the whole field of radiation oncology has changed dramatically in the past decade, but still... Not sure I want to risk other cancer or heart/lung damage. If I have a mastectomy I can forego radiation. Trying to decide whether to have the lumpectomy first or go straight to plan B. Asked about proton therapy and IORT. Was told the former is for kids and the latter is not widely supported as being a viable approach to prevent spread/recurrence.
Hi Rubytoos- is this from John Hopkins? Did you go to their division for rare breast cancers? Very interesting to me about genetic connection. I tested neg for brca genes but I had a paternal aunt and her daughter( my first cousin) that both had breast cancer so I was told in 2011 that there most likely a familiar/genetic contact that they have just not discovered yet. I am very interested in what type of testing you did and the results in regards to this type of cancer.
hi!! I know this is a old thread but was hoping I would get a response. I was dx with dcis dec 2016 had a DMX. One of my margins was close, <1mm clearance. 10 months later I had a recurrence. My surgeon told me that it was the same DX, DCIS. However, I was reading my pathology report and noticed it said papillary carcinoma insitu pattern on my new pathology report! I googled it and discovered all this...
the tumor board recommended radiation and tamoxifen now, which seems to be the correct treatment plan regardless??
But just wondering why no one told me I have this rare cancer...???
What do you all think of my path reports? Are they the same or different?
My initial pathology report says: duct carcinoma in situ corresponding to the first described mass, 12mm, high nuclear grade, with focal comedonecrosis and extension into lobules.
My recent pathology report says recurrent duct adenocarcinoma in situ with features identical to the prior carcinoma High grade solid papillary carcinoma in situ pattern.
Hi Cel82! First of all, I'm really sorry you have a recurrence, especially after a DMX! I hope that the rads and tamox will take care of that sneaky beast once and for all.
Concerning your report, I'm not a specialist, but I interpret it as papillary being one of the growth pattern of your dcis, not that you have a papillary carcinoma. If I understand correctly, there are 5 growth patterns in DCIS: cribriform, papillary, micropapillary, solid and comedo. It's pretty common to have a combination of multiple growth pattern within your dcis sample. If I read your pattern, I see indeed a mix of comedonecrosis, solid and papillary growth pattern. I believe the most high-risk form of growth pattern is your comedonecrosis, which is why you are also considered grade 3. At least this is how I understand it, as a layperson!
It's not uncommon when you have a papillary carcinoma (invasive or in situ) to have it coexists with DCIS; personally, I had what is called an pure encapsulated papillary carcinoma (confined inside a cyst) in the middle of a DCIS area. My EPC is also considered in situ, although scientists are not 100% clear on this. So don't hesitate to clarify this with your doctor!
CEL82- to add to what sourisou said, your treatment is generally based on the characteristics of the tumor (ER/PR percentages, HER2+/-, stage, grade, etc.) more than tumor morphology. So, hopefully, you are headed down a positive treatment path and can put this all behind you.
Hi, obtaining clarification on pathology, as well as 2nd opinions, is often important for papillary lesions because there's no much over-lapping in descriptions which can and does often cause confusion. You are not alone.
Solid papillary carcinoma tumors can be frequently molecular subtype Luminal-B vs Luminal-A, according to a study in France (posted earlier). The solid papillary & invasive papillary tumors can be the most aggressive variants in the papillary family and can involve other subtypes of conventional invasive cells, which is what some of us had. With papillary, the mitosis value is a very strong prognostic value, even sometimes more so than the grade itself, I had been told.
Best wishes to all and HAPPY THANKSGIVING!
Thank you all for the clarification and positive posts! You were right this was the growth pattern. I definitely have moments of anxiety going through this. I know I have to turn this over to god and be positive.
After much back and forth I finally had my lumpectomy last week to excise what appeared to be a 1.2 mm lesion biopsied as a papillary carcinoma in situ with suspicion for invasion. The day before the surgery, the radiologist found three areas in the same breast quadrant of "amorphous" microcalcifications. They were like tiny pinpoints of light on the mammogram, three or four at most in each of the clusters. They decided to excise one of the areas along with the tumor so I had two seeds put in... The results are preliminary, but there was a 1 cm papillary carcinoma in situ as expected, and inside of that, they found a 5 mm IDC, both grade 1. The margins were clean, although the breast surgeon did mention that there were some cancer cells in an area of lymphatic/vascular tissue within the excised tissue. This does not surprise me given that they sort of shredded the lesion fishing out 6 cores for pathology. The papillary capsule provided quite a bit of resistance at that time and at one point they had to work extra hard to get the needle through the lesion. I sort of view these as left over cells from the biopsy, but could be wrong. The papillary lesion previously tested highly ER/PR positive and am now waiting for the results on the IDC. The area of suspicious microcalcs was utterly benign--no breast hyperplasia, nada.
They are going to do some additional tests which may guide treatment recommendations, but basically the BS is recommending radiation or mastectomy if I don't have rads. She also wants to do an SNL. I can't have radiation. The tumor is right over my heart/ung and I battled pleural pericarditis for the better part of the past year. I just don't think the risks outweigh the rewards.
I am not keen to do an SNL. I am not clear if this is just a prognosticator or if removing a sentinel node with cancer is life extending. She said there is only a 10% chance of lymph node involvement. And I really don't want to have a mastectomy, either. It feels like massive over treatment. If I do nothing, the chance of recurrence is 30% over a period of 5-10 years per her. But when I asked about the possibility of mets, I was told it was pretty much nil.
So then why not watch and monitor and if there is recurrence, throw the bigger, high risk treatments at it then, when I am hopefully well beyond any lingering heart problems and and have completely regained my health? And who is to say the treatments might not be better, with less side effects, 5-10 years out, if I even have a recurrence. I have strong odds of nothing ever happening. Right now I am trying to maintain my very fragile health and rebuild my immune system. I am in my early sixties and am reading studies that indicate that life expectancy for women who do or don't do radiation in my age group is roughly the same. My MO may have changed his mind with the IDC diagnosis, but initially he said no chemo and probably no AI either. Thanks the to the previous illness (was basically bedridden for months) and calcium robbing treatments of the past year, I have pretty bad osteopenia in my rib cage, so another risk for radiation or AI, and osteoporosis elsewhere--something else I am trying to reverse. On the other hand, my very experienced and capable BS, whom I respect very much, was really not happy with my suggestion--that I do nothing. But I would not be doing nothing...I would be regaining my health and also, I hope, monitoring my breast health on a regular basis. If they can catch 3 or 4 little things that were smaller than a grain of salt, could only be been on magnification (the microcalcs), I am pretty confident they can catch any bad actors before it is too late. Or am I in denial, being naive?
I would go for a 2nd opinion if your doctor is stating the chance for Mets is almost Nil. You were fortunate this time to catch your reoccurance before it spead to another body organ. I would also speak to your doctor about oncotype score. This will help you understand your level of risk of distant reoccurance and is useful in developing treatment plans.
I was originally thought to have DCIS until the surgery when they found the invasive papillary carcinomas. That was in 2011 and in 2015 I was diagnosed with Mets to the Lungs. i was being carefully followed and we did not see this coming. I have since learned that 30% of early stage breast cancers return to a stage 4.
Just checking in and saying hi. I had my 4 year follow up with my breast surgeon and all good! Another year under my belt!
Fabulous news from Australia! I'm another invasive papillary hoping and praying that we all will have another year under our belts with bragging rights. Best wishes to all.
Congratulation, itsme! I have 2 years under my belt now, and hoping for mant more for all of us!
Hello. I was diagnosed two days ago with invasive papillary carcinoma in my right breast, 1.9 cm, right under the nipple. I will be having surgery in a couple of weeks, but have to decide first whether to have a lumpectomy, mastectomy, or double mastectomy. Then radiation and chemotherapy and tamoxifen. In the meantime, in my pre-surgical workup, they found some shadows on the lower half of my lungs and now want to do a CT scan on those. I am now terrified I have lung cancer as well. My surgeon said the shadows were unrelated...? Any light anyone could shed on all of this (surgical decision, possibility of metastasis of this form of breast cancer, etc.) would be greatly appreciated.
Hi there, mjl432! We want to welcome you to BCO. We're sorry you find yourself here, but we hope you find this to be a place of support! You may find some helpful information in our surgery forum: https://community.breastcancer.org/forum/91. We hope your scans come back clear, and you're able to continue with your treatment plan!
Really sorry you have a reason to join this thread, but wish to send you a warm welcome. You're not alone, although we are a group of papillary sisters, but low in number. But we're here for you!
A few of us have presented with the rare Invasive Papillary (3cm), like myself, and I'm fine 5 yrs later.
From past lung/bronchial infections (pneumonia), some of us also had shadows, scarring and glass opacities show up on chest xrays, so you are not alone. There is no need to worry, unless your medical team gives you a good reason. Easier said than done, I know.
My 1st suggestion is a MRI scan, although papillary lesions under 5mm might not likely be visible. Something to keep in mind.
You didn't mention the location of your papillary tumor. There's been a tendency for multiple papillary tumors to present along the peripheral breast areas. Something to keep in mind when making surgical decisions.
Because it's very difficult to what, if any, conventional malignancy(s) may present in a biopsy, you may wish to get multiple dedicated Breast Pathology opinions on your final surgical pathology slides.
Unless an invasive papillary patient has concurrent aggressive Grade-III conventional cells (IDC, for example) or Luminal B molecular phenotype or a high mitotic rating (mitosis index) with concurrent IDC, Invasive Papillary usually does NOT travel throughout the body as mets clusters, from what I've learned.
FYI, I had a bilateral mastectomy following a lumpectomy because my 1st annual MRI scan exhibited multiple Mucinous Carcinoma lesions.
Why is your medical team recommending chemo? Did you score high on Ki67 or Oncotype or Mammaprint genome testing?
Hugs to you!
Hello! Thank you so much for your reply, and for all of the information you shared. I'm so sorry you have had to go through this. All of the info is very helpful during this overwhelming time.
I don't have a ton more information, but the breast MRI I had earlier this week came back clear, and my radiation oncologist did a breast exam where she could not find any additional cause for concern in either breast or lymph nodes. I will have a lumpectomy in a couple of weeks along with a sentinel lymph node biopsy, so then I will be able to really know more. The radiation oncologist said that the chances of me having anything concerning in my genetic testing or chest exams was very low.
In the meantime, I also had a chest CT this week, and though my surgeon is away, I called the office to see if I could find out anything about it before the weekend. The person I spoke with said that the surgeon would go over the results with me, but that based on my history (by which I think she meant my diagnosis as she said that after and I clarified with her) the recommendation was a follow up chest CT in 3-6 months. She said this was a typical follow up for my diagnosis, and that it did not mean that there was anything additional to worry about, but she also seemed reluctant to talk much about it, so I am not feeling totally relieved. Any thoughts? Would it be to make absolutely positively sure there hasn't been any spread since they haven't done the lymph biopsy yet?
Thank you again.
Surely these doctor's visits, evasive explanations and inconclusive results are wearing down your nerves. It's stressful and tiring for anybody, but please try to feel reassured that your medical team wants to leave no stones unturned and eliminate all possibilities. It's difficult for any patient to have patience during this process.
Radon toxicity, 1st, 2nd & 3rd hand smoke, embolisms and various other benign lung conditions (infections, etc.) can affect the lungs. In my own situation, I've had multiple repeat chest imaging done. Every situation is different.
In the interim, please try to focus on the positive aspects, such as your clear MRI. You stated you'll be having your surgery in a couple weeks, so please try to stay as positive as you can in a calm, peaceful place. It's so very hard, but if you do yoga, tai chi, soft or classical music, warm baths or take walks along a body of water, it may help you to stay centered. Just please take little baby steps, as I know this all can be so very overwhelming.
Hugs to you, sister!
Thank you, trying to do that. Got a call back that they want to do another biopsy on another nodule in the same breast, so trying to keep it together and take care of myself. Thank you for your kind words.
I haven't been around for a very long time. I had papillary carcinoma in 2015 in my left breast. I opted for a lumpectomy with radiation. The doctors didn't think I needed chemo. There were two lumps; the larger one was benign, the little one hiding behind it was cancer. My lumpectomy also entailed removal of a couple of sentinel nodes. They were clean. I also had a hard time keeping it together. When I was first told (by phone) that it was malignant, I screamed the house down, wandering in circles in my apartment. My grandmother and mother both had breast cancer. As my mother said when she got it, "it's not if, it's when".
Since then, my scans have been clean. In 2016 there was a lump in my right breast, which was pre-cancerous (I can't recall the circumstances). I opted not to take an estrogen suppressor, since it would lower my chances of recurrence by at most 5%.
So far, so good. I see my doctors (breast surgeon, oncologist, radiation doctor) every six months, and get a mammogram and/or ultrasound every year. The last time I saw my surgeon, she recommended a yearly MRI, which I'm going to do. There are social workers who can help you during this time that are affiliated with the hospital.
FYI, my mother had various nodules and things in her lungs, but I don't think they became malignant. She has had FOUR different kinds of cancer and has lived to 94!
Good luck, my friend!
mj- I know it is hard, but you can get through this. You are probably in the worst part right now. You have a partial diagnosis, but no treatment plan in place yet. Things will settle down once you get a full diagnosis and a treatment plan in place. There are a ton of resources here at breastcancer.org to help you through, as well as a bunch of very helpful, knowledgeable and caring women (and a few men) who have been where you are going and are willing to help you on your way.
A little over 2.5 years ago, I was diagnosed with an encapsulated papillary tumor and DCIS. My tumor had all of the not-so-good attributes obsolete mentioned (grade III, luminal B, high Ki67, really high oncotype). I did a lump, radiation, 4 cytoxin/taxotere treatments and I’m 2 years into 5 years of femara. There are certainly lingering effects, but I’m doing ok.
You will make it through this.
Thank you all. A few more details in and it turns out the second mass is a fibroid adenoma, but I do have the ATM genetic mutation, so feeling thankful that it is breast cancer so far and not (as far as I know) pancreatic or colorectal cancer, though they are sending me to check on those as soon as I am done with some of this. I am opting for bilateral mastectomy since my history suggests that I will otherwise be going in for pretty regular biopsies and imaging if I just do a lumpectomy, and I am feeling pretty done with all of that and like I may not tolerate the anxiety well anymore now that I have had a diagnosis. They will do the sentinel node biopsy on the day of surgery and after that I should know what else is to come after. Thank you for sharing your experiences and support!
MJ, thanks for updating us with your bitter-sweet news. Good for you, and that's the way to do it, one baby step at a time. You're in good company here with bilateral mastectomies, myself included. Genetic mutations are outside of our own DNA control, but you're intelligently advocating for yourself with a good medical team who has your back, so you will undoubtedly do very well. So happy for you that you are seeing the forest thru the trees and just taking what they throw at you, day by day, as we all try to do. Extra big hugs to you, and well wishes go out to all our sisters. Take care!
I don''t come here much anymore, but decided to drop by.
11.5 yrs since papillary diagnosis, all is well!
Thanks again obsolete. Was feeling pretty solid with my choice and then saw a medical oncologist yesterday who is a genetic mutation expert for a second opinion. She basically said that if I was choosing BMX based on genetic mutation of ATM mutation alone then that might be extreme, but if the idea of the testing protocol after lumpectomy would also factor in in terms of my quality of life, then she likes the decision. She also said most women with ATM mutation and a diagnosis do not choose BMX, which contradicted what my surgeon said. Now my husband is panicked and is arguing that what the med onc was saying is that BMX is not standard treatment, and now I am feeling so confused and tired and don’t know to do. Surgery scheduled tuesday
Hi KuchaGirl, congratulations on 11-1/2 years!! I hope we all get to follow in your footsteps. Just curious, did you take tamoxifen or an A.I.? If so, for how long?
Hello again, MJ... Yeah, it's agonizing in trying to make the best surgical decisions. There is no right or wrong decision, as BC is not a black & white reality, but many shades of gray. Please follow your intuition.
You had stated that your Papillary tumor is under your nipple, and this is the best location according to studies. You also said your tumor is moderately sized and invasive, which leaves open the remote possibility for potential conventional invasive cells (IDC, for example) also, which will not be known until your entire tumor is evaluated by Pathology. However, the majority of conventional invasions are along the periphery of Invasive Papillary tumors, which usually has small minimal extensions. Hmmm, you might consider asking for an "excisional biopsy" first, with wide margins, so that the extent and type(s) of invasions could be known upfront, before you make a final decision on a BMX. Good luck Tuesday and please keep us posted. The following links might be helpful:
"Optimally, in our opinion, localized papillary lesions should be excised completely with a small rim of uninvolved breast tissue without any prior needle instrumentation if and when the papillary nature can be determined by imaging."
MJ, you'll be in my thoughts and prayers! Big hugs to you.
I really appreciate all of your replies obsolete, thank you. Are these links indicating that, as my surgeon and all docs I have seen so far have said, that there is really no way of knowing what they are looking at with papillary until they take it out? I have been told that it may turn out to be DCIS after all once they take it out, but there was something about slides being fragmented and some appearing encapsulated and some invasive. Are these links suggesting as well that biopsy on papillary tumors can contribute to their invasion of nearby cells? I saw something about this somewhere else too.
The surgery decision for me at this point is really a combination of my history of dense breasts (fibroid adenoma at 20 with lumpectomy, biopsy for benign cyst at 32, ductogram after blood in nipple discharge 3 years ago, biopsy with subsequent cancer diagnosis, then biopsy for another fibroid adenoma after that), the genetic mutation risk, and my perhaps irrational desire to avoid radiation. My husband and other family members are suggesting that I just get a lumpectomy and see what's what and then see how I feel with the subsequent testing every six months, then I could get a BMX if I can't stand the anxiety and all of the procedures that would come with testing. I think I may already be past the point of being able to stand the anxiety. The medical oncologist I saw yesterday also mentioned several times that with my genetic mutation if I do a lumpectomy my doctors will likely want me to stay on Tamoxifen indefinitely.
So complicated, but thinking I will still go ahead with BMX on Tuesday and hope that margins are clear and no lymph node involvement, and spare myself however many years of worrying about my increased risk and constant biopsies on everything that pops out of the MRIs.
mjl432: FWIW, papillary is notoriously difficult to diagnose correctly in pathology because the tissue tends to break apart like cottage cheese in water. My cancer was diagnosed as DCIS in biopsy and lumpectomy, but reclassified as invasive when the Oncotype lab looked at it. Unbelievable to me that it was the Oncotype lab and not hospital pathologist who correctly diagnosed it. It is common for papillRy tumors to show both invasive and DCIS traits.
Integrative genomic and transcriptomic characterization of papillary carcinomas of the breast
Spectrum of Papillary Lesions
Note: Many women with Invasive Papillary Carcinoma of Breast haveenlarged axillary lymph nodes, which are often suspected to be due tobreast cancer metastasis (or cancer spread). However, biopsy of thelymph nodes shows that the enlargement of the lymph nodes is due to abenign reactive process and not due to any metastasis.