Well, ladies, Irishluck and Alert, I am joining your "club"! I just turned 70 and was dx with Papillary Carcinoma just before Thanksgiving and after learning the rarity, decided to get a second opinion at Johns Hopkins ( about 1 1/2 hours from me) Ultimately, I decided to be treated there as well. Had my surgery on Jan 10th and am just finishing my radiation treatments tomorrow. The daily ride (3hours RT) has been the most stressful but I really feel like I am in the best hands possible. Wishing you both an easy time of it (is that possible with cancer?) Prayers that things to well for you. My next decision is the hormone therapy. I see the Medical Oncologist the end of the month and I don't feel very positive about this part of the treatment. Side effects sound terrible and I had a horrible menopause the first time, I have osteoporosis, osteoarthritis and fibromyalgia on top of all that. So tempted to just be done now.
CarTab and ladies, I hope you're all on the road to your recovery from surgery and treatments. If you're fortunate enough not to have any invasive components in the mix, please use caution in accepting any over-treatment, if possible. There's much controversy among the research regarding treatment. Good move in getting 2nd opinion on pathology. Will keep you in my prayers.
pdf presentation ... Practical Approach to Papillary Breast Lesions
pdf classification of ... Papillary Lesions of The Breast
HI Cartab Papillary bc is the best invasive to have. I had to be diagnosed at 4 hospitals including Penn and Sloan Kettering since I have HER2+ which makes it fast growing and is unheard of with papillary. I am getting 12 weekly treatments of taxol + herceptin and then 4 weeks of extra strength rads, then 8 more months of herceptin for the HER2 and then likely Arimidex. I would only have had radiation if I didn't have HER2+. Rads and hormone treatment is standard for invasive papillary. Since you have invasive and you are 70( I'm 65) that determines the follow up use of treatment like Arimidex. I was going to go to JH if I didn't have access to Penn / Sloan Kettering. Since , JH has the center for unusual breast cancers and I would do whatever they recommend. This is a highly curable cancer with a 90% cure rate after 5 years. They know what they are talking about. I have heard women adjust after a while to the hormone therapy. No point worrying how you will respond since you have no idea. By the way ,my chemo is like chemo-light and I am doing great.
I am brand new to this site (well, brand new to post, but I've been reading for about a month now) and so thankful for all of the information. I, too, was diagnosed with papillary carcinoma, but I am 46 and from everything I've read, it's an unusual diagnosis for someone my age. I'm also pre-menopausal (still a VERY regular 28-day cycle). I even had the pathology run again, just to be sure, and it still came back as the same. Just wondering if anyone else out there was diagnosed in their 40's?
My tumour was about 70% solid papillary carcinoma and 30% IDC not otherwise specified. I was diagnosed at 43.
I was 47 when diagnosed. Tumour was grade 3, which is also unusual....
I was 46 when first diagnosed with stage 2.
Welcome Pi and Noodles ... hope you're hanging in there OK.
Incremental dx's due to occult lesions (never seen on imaging) & multiple pathologies
Age 49 - DCIS Grade-III, <1 cm, LX
Age 50 - Invasive Solid Papillary, 3 cm, Grade-II ER+ PR+ , low HER2-, LX
Age 51 - Invasive Mixed Mucinous, multi-focal <1 cm, Grades I & II, ER+ PR+ HER2-, BMX
Best wishes to everyone.
SNIP (same pdf link above)
Arch Pathol Lab Med—Vol 133, June 2009
Papillary Neoplasms of the Breast - A Review
"Optimally, in our opinion, localized papillary lesions should be excised completely with a small rim of un-involved breast tissue without any prior needle instrumentation if and when the papillary nature can be determined by imaging."
Thank you for sharing some more info with me. I didn't have my settings correct so I didn't even know anyone responded until just now. All fixed!
Hi, I've got 2 IDC in my right breast plus another 5 mm papillary adenocarcinoma.
Does anyone know if that changes anything? I've also got 2 areas in the left breast, 1 IDC & 1 DCIS
so having a bmx. All 5 areas are small, but multicentric. Seems weird that so many places showed up.
"Interestingly, we found that intracystic papillary carcinoma with invasive ductal carcinoma had 11q22.1–23.3 gain when compared with intracystic papillary carcinoma without invasive ductal carcinoma. In this region, there are multiple MMPs genes. These genes are known to have major role in tumor invasiveness.24These genes might be responsible for giving intracystic papillary carcinoma the capability for invasion and forming invasive ductal carcinoma. However, we could not compare intracystic papillary carcinoma vs invasive ductal carcinoma because of the small number of invasive ductal carcinoma cases that had successful gene array.
For the pathogenesis of pure intracystic papillary carcinoma vs intracystic papillary carcinoma with ductal carcinoma in situ, we believe that they both start with major chromosomal changes (16p gain, 16q loss, 1q gain and 7q loss). They differ in additional minor chromosomal changes (Figure 7)."
A belated welcome to the papillary new members! I'll keep you all in my prayers. Blessings ....
Breast malignant, males, childrenCarcinoma subtypes
Papillary carcinoma - invasive
[Microscopic Images noted]
2013 overview of Papillary Carcinoma (Greece)
Year : 2013 | Volume : 9 | Issue : 4 | Page : 564-570 Encapsulated papillary carcinoma of the breast: An overview
[ India 2013 ]
(2017 Case Report) https://www.hindawi.com/journals/crim/2017/3725391...
Natural History of Invasive Papillary Breast Carcinoma Followed for 10 Years: A Case Report and Literature Review
".... we report a case of invasive papillary breast carcinoma followed for 10 years in a 59-year-old woman who refused any treatment. The diagnosis was based on core needle biopsies. At the patient's first visit in July 2006, the tumor measured 10.4 × 7.2 × 3.5 cm. It was staged as IIIB (T4bN1). In May 2016, the tumor was staged as IIIC (T4bN3a). In the past 10 years, the tumor has increased to 12.1 × 9.0 × 4.2 cm. However, a whole-body bone scan and 18F-FDG PET/CT showed no evidence of distant metastasis. Immunohistochemistry results, corresponding to biopsies taken at subsequent examinations, have remained unaltered since 2006. The tumor was estrogen/progesterone receptor-positive and C-erbB2 expression was not detected. The Ki-67 labeling index was around 10%...."
"....Papillary breast carcinoma is a rare type of breast cancer, accounting for less than 1% of all breast cancer cases . It has a favorable prognosis, which was evident in the present case . Lymph node involvement and distant metastasis are uncommon ...."
"....In the present case, the patient experienced asynchronous contralateral breast cancer after mastectomy...".
"...Skin abutting the tumor showed progression to necrosis with a foul-smelling discharge...."
".... It is important to differentiate invasive papillary carcinoma from noninvasive forms. Moreover, invasive nonpapillary carcinoma associated with encapsulated papillary carcinoma and solid papillary carcinoma should not be classified as invasive papillary carcinoma but instead categorized according to the individual invasive component ...."
"Conclusion: The standard treatment in invasive papillary breast carcinoma is surgery as lumpectomy, although invasive papillary breast carcinoma shows a relatively slow disease progression as noted in the present case. It remains a high risk to observe only. The current case is also a reminder that patients who have received treatment for primary breast cancer require careful clinical examination supplemented by mammography."
Article Citation: Shi Wei (2016) Papillary Lesions of the Breast: An Update. Archives of Pathology & Laboratory Medicine: July 2016, Vol. 140, No. 7, pp. 628-643.
SPECIAL SECTION—SECOND PRINCETON INTEGRATED PATHOLOGY SYMPOSIUM: BREAST PATHOLOGY‐2015, PART I
"Context.—Papillary lesions of the breast ... constitute a heterogeneous group of neoplasms with overlapping clinical manifestation and histomorphologic features, but may have divergent biological behavior. ... the histologic distinction of these entities is not always straightforward. Historically, different terminologies and variable criteria have been proposed for a given entity by various authorities. The difficulty in classifying these lesions has been further confounded by the scarcity of data and the heterogeneity across different studies with regard to the molecular genetic characteristics of this group of lesions..."
"Conclusions.—The recent evolution of molecular techniques has enhanced our knowledge of the pathogenesis of papillary carcinomas of the breast. This, along with emerging outcome studies, has led to prognosis-based reclassification of some of these entities. Additional studies focusing on the molecular signatures are needed to identify potential decision tools to further stratify these lesions with respect to prognostic significance."
Journal of Case Reports and Images in Pathology, Vol. 3, 2017.
A rare entity
[ 2 Cases Presenting Without DCIS ] Published: 25 March 2017
Table 1. Histologic grade and intrinsic molecular subtype of 16 papillary carcinomas and 16 grade- and ER-matched IDC-NSTs.
All but one EPC and all but one IPC were classified as of luminal A subtype, whereas all SPCs were classified as of luminal B (Table 1).
... our study confirms that PCs of the breast preferentially display a luminal phenotype, have relatively simple genomic profiles, and are unlikely to be underpinned by a highly recurrent fusion gene or a pathognomonic expressed mutation. In addition, our findings offer insights into the molecular basis of the relatively indolent behavior and distinct morphological features of the three subtypes of PCs. When compared to that of IDC-NSTs of the same grade and histologic type, PCs express proliferation-related genes at lower levels, features consistent with those of ER-positive cancers with an indolent clinical behavior, and display lower levels of expression of genes related to cell adhesion, migration and movement, suggestive of a less invasive phenotype.
supplementary PDF: http://ars.els-cdn.com/content/image/1-s2.0-S15747...
Papillary Neoplasms of The Breast
Mass General & Harvard, April 2017
Thanks for posting all of these studies/links/information. Super helpful. I surfed on over here after your response to another post. I have a papillary carcinoma that is possibly in situ but is suspicious for invasive features. It is strongly PR/ER+, don't know about HER2 as that was not reported. This information was gathered from a core biopsy. Am having a lumpectomy and sentinel node biopsy. I really wanted an excisional biopsy from the get go... I imagine my little tumor buddy is in shreds at this point. I am having a lumpectomy and sentinel node biopsy, but have been asked to meet with a radiologist and an oncologist prior to surgery. However, it is nicely positioned against the chest wall right over my heart and I cannot risk any lung/heart complications from radiation. I have battled viral pericarditis and am one of the 20-30% who relapse or have recurring cases. I could not tell from the literature whether having/not having radiation has a big impact on survival. Given the apparent indolent nature of this cancer, why, I wonder, are women being put through radiation, chemo and hormones just as for something more aggressive? These treatments surely have a cost and can't be great for one's overall health and immune system. I am also thinking about asking for a second opinion from Johns Hopkins although the wheels are in motion and don't want to delay the lumpectomy given this was identified/misidentified a few years ago on a diagnostic mammogram. One thing that has greatly bothered me--and am wondering if anyone else with papillary carcinoma has experienced this--is pain with this lesion. It is what prompted me to ask for a diagnostic mammogram in the first place. The lesion is bothersome, but the feeling of pain and fullness in my axilla is what bothers me the most.
Rubytoos- I would be interested in your thoughts if you go to John Hopkins rare breast cancer division. I have considered going there for a 2nd opinion vs Dana Farber which is much closer. I have invasive papillary carcinoma with in situ also. I had a reoccurance 4 years later to stage 4. I did lumpectomy, chemo and radiation first time I also had a high onco score. Did you do the onco testing to help determine your treatment recommendations?
Rubytoos - I am also interested in your thoughts. I had an intracystic (encapsulated?) papillary carcinoma. Stage 1, grade 3, high oncotype. I did a lump, rads and TC chemo.
Papillary carcinomas are not always the gentle tumors they are often made out to be.
Hey, I am pretty early in the process, so will confess I don't even know what an Onco score is SingleMom1. Reading some of the posts here, I am definitely going to get a second opinion and will ask for my records to be sent to JH for same. I am so sorry to hear about the recurrence 4 years post treatment. And no, LimnoGal, I agree. Something tells me this tumor is not good news .
I am having a big consult in a couple weeks--a full-on "Interdisciplinary" approach--mostly I think, because I suggested I have a bi-lateral mastectomy. I also have a lot of pain with this.
I wish all you ladies the best as you continue going thru dx, surgery or treatment. You all remain in my thoughts and prayers. Please believe in your body's natural ability to heal and recover and reach NED.
I also had pain in my breast with the papillary carcinoma. The pain would come & go intermittently, sometimes a dull ache to sometimes stabbing pain & itchy feeling. That intermittent pain is also what had prompted me to self-check plus go back to the doctor following negative mammograms after my 1st lumpectomy (DCIS Gr-III).
2nd lumpectomy followed after self-discovery of palpable Invasive/Solid Papillary approx 3cm (Gr-II), followed by pre-surgical MRI finding Mucinous Carcinoma, which resulted in BMX with the additional finding of multiple Mixed Mucinous Carcinoma (Gr-II). Also had conventional IDC entrapped within the wall of Papillary tumor. Now 4 years out and doing well, but hormone therapy is still a daily struggle. Hang in there.... hugs to all!
Rubytoos-"Onco score" is short for oncotype test score. An oncotype test looks at several genetic markers in your tumor to indicate whether chemotherapy would be an appropriate treatment for you. Low oncotype scores mean that the risks of chemo are likely to outweigh the benefits. The higher the oncotype score, the more benefit you will likely derive from chemo. I had a screamingly high score (49), so off to chemo I went. Oncotype tests are done for estrogen positive tumors.
Best of luck to you!
Limnogal- interesting, I had a fairly high onco score at 39. You are the first I have heard of someone else having a high onco score with this type of tumor. My understanding if that the score is usually low and sometimes moderate.
I've just been diagnosed with an encapsulated papillary carcinoma within an area of grade 2 (papillary?) DCIS - so far a 3.2cm zone but with positive margins so I won't know the final size until re-excision. My surgeon was very surprised to find the EPC as I'm 43, but reading this thread it seems it's not that uncommon. He still considers it as DCIS and doesn't even want to do sentinel node biopsy if I chose lumpectomy again. The problem is that I might not be eligible for breast conserving surgery since I had rads for Hodgkin lymphoma years ago. It depresses me that I might have to opt for mastectomy although it's "only" DCIS; it seems so overkill, even though I understand that in my case it might be the best way to prevent a recurrence.