Mucinous Carcinoma of the breast
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Kelly, I'm very sorry you're finding yourself here at such an early age 29 during your young womanhood. Please consider obtaining 2nd opinions on BOTH Pathology AND Oncology, if possible. Especially on Pathology, you may be surprised in how much breast pathologists vary in opinion and how crucially invaluable the findings may be. (I say this from my own experiences.). Asking for opinions on the % ratio of neoplasm to mucin is as important as learning whether cells are mixed or pure. I also had multiples of mucinous and DCIS, not visible on MRI, some of which was not found until after my BMX. I did not do chemo, but I was much older than you (50), and my mucinous was mixed with a few conventional neoplasms. But please get those important 2nd opinions if you have not already done so. You will not regret it.
I sincerely wish you and all the ladies & gentlemen BC patients and caregivers the best. You all will remain in my prayers & meditation, especially those with upcoming surgeries and treatments. Hugs!!
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Hey Kellyw,
We have an almost identical first-part of the story (age, size and position of tumor etc), though my oncotype was 14 and no second tumor. I'm so sorry to hear that you're dealing with another surgery and harder decisions. I just wanted to offer my support and experiences if there's anything I can help you with now or in future.
~glow
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thank you for the replies. My tumor is smaller at 5.2 mm but higher nuclear grade of 2 with mucinous, micropapillary, and cribriform patterns. The size of the DCIS was 8.2mm but only 5.2mm was the tumor. My first tumor of 2.8cm had just cribriform. I am in the process of seeking a 2nd opinion and I don't meet with my 1st oncologist for another week to discuss future treatment plans and 2nd pathology opinion. The smaller tumor did get a 2nd opinion through the MRI biopsy because it was at another facility.The report did state "not identified: multiple simultaneous invasive carcinoma."
I am currently healing from my mastectomy.
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Greetings,
I've spent the last week reading all 64 pages of this thread and I feel as though I know each and every one of you. Thank-you so much for keeping this thread going and Voracious for being the rock. This morning, I laughed and cried when I read the report on the Wurgablurghablurghagagle cancer posted by Glowgene.
When I had my initial appointment with the B.S. and her medical assistant (the day I found out I had cancer) they stated that it was pure IDC in the right breast. They had the pathology report but not the biomarkers and there was a concern that I might be triple negative and lymph node invasion. I obtained the pathology report on the core needle biopsy just last week after my lumpectomy. The pathology on my core needle biopsy states: Invasive Ductal Carcinoma with Mucinous Stroma ( I have no idea what this means.) Biomarkers: ER + 100% PR + 30% HER2 by IHC Negative score (0). The surgical pathology report is not yet available. The notes by the radiologist states there is no evidence of lympho-vascular invasion and there are calcifications under the right nipple---this was never communicated to me by my B.S. There is a dimple on my left breast, which is also a concern, but nothing shows up on imaging.
WTF---I feel as though I was kept in the dark regarding the characteristics of my tumor. My B.S gave me the impression that my tumor was growing fast ---she indicated that it was 3 - 3.5 cm when in fact the radiologist report reads 2.5 centimeters. Of course, I wanted the lump out ASAP and hastily agreed to the lumpectomy since it requires less time in the operating room. I had indicated numerous times during the initial visit that I wanted a mastectomy and they spent the entire appointment trying to convince me that lumpectomy was the way to go---don't ask me why???! I was not in a good frame of mind, having just found out I had cancer (apparently this thing was growing out of control) and the prospect of weeks of negotiating with a plastic surgeon regarding reconstruction did not appeal to me. I'm not thrilled about 7 weeks of radiation and the havoc it could do to my heart and lungs. The fact that mucinous cancer doesn't show up very well on imaging until it reaches a certain size is a very big concern for me re: the dimple on my left breast.
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I should mention that I noticed a dimple on my right breast last year but nothing showed up and there was no palpable lump. This year of course, all hell breaks loose. No one but me seems concerned about the dimple on the left breast and I'm sure they would prefer to just monitor it with serial mammogram/3D mammograms/biopsies etc etc.... Seriously, I don't need this kind of stress! I would prefer a bilateral mastectomy and my breast surgeon has flat out refused to do a bilateral mastectomy. Is a second opinion warranted? Are all doctors so in set in their ways?
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Hi Bosombuddy101: So sorry you need to join us. I am totally impressed by you reading the whole 64 pages. I am dashing out for ordinary appts but just wanted you to know you are on my prayer list this morning along with all these other MC girls that you return to good health. Blessings
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Hi ladies,
I posted briefly on here in May but had to take a step back from this site because I was overwhelmed by it all and was making myself paranoid. Now after surgery and pathology reports, I have come back hoping to connect for a while with my fellow MC ladies.
I was diagnosed in May with MC. Fast forward, I had a mastectomy with reconstruction on June 28. All is going well in the healing end. Tomorrow I meet with my onco for the first time but I got my oncotype score today: 20. Damn gray area!!! So I am trying to gather as much research on treatment of MC, particularly chemo. I thought someone mentioned an MDAnderson study about it but can't find it or looked it the wrong places. Or perhaps it is outdated?
What I know about my cancer is this: Stage 2a, multiple spots--largest was 2.1 cm and a few spots were DCIS. All were in the same quadrant. Sentinel lymph test was negative. ER+ (87%), PR and HER negative. Genetic tests are negative. Tumors grade 1, non-DCIS tumors were pure MC. If anyone has any suggestions for researc to read before my appt, I would appreciate it!
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kt....not sure what study you are referring to. Also...you don't mention your menopausal status. My suggestion would be to have a tumor board review your case. Typically, the average Oncotype DX score for mucinous breast cancer is 15. Also keep in mind that the OncotypeDX test is not as strongly validated for mucinous bc as it is for more traditional breast cancers. Also, grade 1 cancers do not respond as well as other grade cancers to chemo. So, you are in a very, very, grey area. Another issue worth discussing is ovarian suppression if you are pre menopausal.
Check out the NCCN breast cancer treatment guidelines. There is a page that specifically addresses tubular and mucinous breast cancer treatment. Be sure to read the footnotes and the discussion pages. The guidelines should be a great starting point for your treatment decisions
Good luck. Please come back and tell us what you decide to do...I wish you well
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I think I am in perimenopause. I am 44 and have started to notice small changes. I will check out the research you mentioned. Thank you!
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Bosom...there are so many issues that you are identifying that I haven't a clue what to say. All I can say is to give you some general advise.
First, i don't know why your team did not agree to your desire to have a mastectomy. All I will say is that for most of us, cancer does not grow so quickly that time is of the essense. Most patients take their time to come up with a treatment plan that works just for them. No two people are the same. Please keep in mind that survival is about equal whether you do lumpectomy and radiation or mastectomy. In fact, there are slightly more local recurrences in those who do just mastectomies. Now...with respect to radiation causing lung and heart damage...that possibility does exist. But most patients, including me, do fine with radiation.
Now, mucinous bc not showing up on mammography...yep! Been there. Done that. But, despite mammography missing my tumor, mammography is much better now and once diagnosed, you can bet that those radiologists are going to scrutinize in the future your imaging ...very, very, carefully.
Hang in there. i am sure once you are further along on this journey, you will be able to handle this trip that none of us ever wanted an itinerary... and my tumor, on the final path report measured larger than anyone had predicted. I am approaching 8 years since diagnosis and life is good..
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Great article, voracious!! Thank you!!
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Tricianne, Thank-you for the warm welcome and adding me to your prayer list.
Voracious, I'm still in disbelief what happened to me during the first visit with the B.S and her medical trainee. I take comfort in knowing that this is not the "norm." I felt pressured to do something fast because the tumor was supposedly growing-- I don't know how she knew this because the imaging from the previous week (at the very same hospital) showed that the tumor was 2.5 centimeters. Of course, I had no way of knowing this because the radiologist notes were not available to me at the time. I specifically asked them if I had pure IDC because I was hoping there was some IDCIS in there somewhere and would hopefully make the invasive feature of the tumor smaller. There was a noticeable pause and they looked me straight in the eyes and said "pure IDC" From the core needle biopsy notes, does it sound like I have mucinous cancer? I've looked everywhere on dr. Google and I've seen IDC with mucinous features but never described as IDC with mucinous stroma. I'm so hoping I have the "good" cancer. Oxymoron, I know. ;0)
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Hey guys,
I had an appointment today for a second opinion and just got back The doctor was super knowledgeable and sweet. He actually had access to the surgical pathology report because the hospitals are connected through the university. The report is 7 pages long, so I won't bore you with details but the highlights are: "this mucinous carcinoma has about 80 - 90 % cellularity and all three lymph nodes removed were benign. The tumor size is 2.5 centimeters----mostly mucin. Yeah, I'm talking spit. Yeeeeessss!!!!!
Being diagnosed with cancer makes one feel so out of control---it's almost like an out of body experience because I felt myself during the past few weeks. looking down on my sorry predicament and hoping to God that my body wouldn't fail me. Anyway, I'm having a bilateral mastectomy at the end of the month. My new doctor emphasized because my cancer is mucinous that many times they see it show up again in the same breast. He did say they rarely see Mucinous carcinoma metastasize. Apparently I lost my right nipple during the lumpectomy---I didn't know this because it was still underneath the bandages. Ughhh!
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Oh, the surgical pathology report also states that "DCIS is also present away from the invasive focus 4mm from the lateral margin. Cribriform and nuclear grade 2/3. Interesting! I'll have to look this up on dr. Google.
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B..B..101 and KT..., hoping your continued recovery from surgery is smooth & uneventful. We welcome you ladies here. Yes, we all need to continue being our own medical advocates by getting valuable 2nd opinions. Congratulations on clear nodes and a pure mucinous dx. (I probably had mixed mucinous, but pathologists couldn't agree because I also had invasive papillary carcinoma with mixed conventional IDC.)
Although I cannot put my fingers on the links, I've previously read articles that higher ER % (and sometimes PR %) generally correlates with lower Oncotype DX scores. I've also been told that a lower HER2- score tends to sometimes yield a higher Oncotype score.
I recall having felt the same pressures & frustrations in having to negotiate for more surgery (my BMX) while getting 2nd surgical opinions, after having had requested multiple breast pathology opinions. And each was different. Yeah, the psychological pressure on ourselves to remove our tumors is immense, especially when there's so much uncertainty. It's an enormous learning curve for newbies and the rest of us alike.
Your concerns for potential heart & lung damage may be warranted, as I had the same concerns about RT due to family history on both sides. Ultimately the BMX was the best decision for me, although I was given the option to have Radiation Therapy following my BMX, but I had declined once again, as I had after the lumpectomies. I accepted hormone therapy only.
Grade 2/3 DCIS is the middle of the road "intermediate" grade, and cribriform is an architectural pattern.
I would guess stroma refers to the surrounding neoplasm within your mucinous lesion's tissue, perhaps empty mucin containing no actual visible malignant cells. It's a royal pain how pathologists descriptions vary. Very frustrating.
As requested, I am re-posting below a snip from our V.R.'s invaluable original post regarding the M.D.Anderson study on mucinous lesions. My pathology diagnosis had reflected some hidden surprise lesions, as is the case with an estimated 38% of us, according to the study.
New study questions true favorability of rare breast cancer type
- Date: December 12, 2009
- Source: University of Texas M. D. Anderson Cancer Center
- Summary:
- "In a large review of breast cancer patients with mucinous carcinoma, researchers have identified an association between this rare type of breast cancer long-associated with a favorable prognosis and multiple tumors undetected by mammography or ultrasound........
- .....However, while 10 percent of the women first presented with more than one tumor, after surgical resection and complete pathological review, the actual rate of multifocal disease was 38 percent. None of these tumors were detected by mammography and/or ultrasound."
- https://www.sciencedaily.com/releases/2009/12/0912...
Newcomers and seasoned members will continue to remain in my prayers. Best wishes for positive energy & healing with your upcoming surgeries and treatments.
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Obsolete,
Thank-you for the welcome and the prayers. I'll be sure to ask for the Oncotype DX score when I meet with the surgical team If the mucinous carcinoma has 80 - 90% cellularity how much of that would contain malignant cells or does it vary? I've seen pictures and there are little dots scattered here and there. Are the dots the malignant cells?
It's frightening how imaging can miss so many of these tumors---I would never have peace of mind! My new breast surgeon states that even though I have a rare cancer with good prognosis, it tends to recur because of the mucin---at least that has been his experience.
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thanks, obsolete!!
I had my onco appointment yesterday. She said chemo was an option but couldn't enthusiastically recommend it. It would be a 3% chance in recurrence. I lean toward not doing it but may get a second opinion for peace of mind!! I am glad I have MC as opposed to other types but it is definitely hard to make concrete decisions when there are so few of us represented in the research!
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Does anyone else suffer from post nasal drip? I never had it before until about 5 years ago when my yearly allergy symptoms during the months of June and July mysteriously disappeared. I'm not being treated for it because it doesn't cause too much discomfort and my G.P thinks its related to allergies which I no longer have?! Oh, and how do I include the details of my diagnosis at the bottom of my posts?
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Bb101,
Regarding your 80-90% cellular presentation, your pathologists would be able to answer your questions on your slides. Neoplasm can be benign, borderline or malignant, so % seems to vary between patients, I had been told. When I had viewed my slides, I wasn't able to make a distinction LOL
Here's a link to 30 varied images with brief explanations for your visual comparison: http://www.webpathology.com/image.asp?n=1&Case=297
https://www.ncbi.nlm.nih.gov/pubmed/19633645
Microscopic mucinous subtypes:
Mucinous A (or paucicellular) - more mucinMucinous B (or hypercellular) - less mucin and neuroendocrine differentiation and argyrophiliaDid your pathology report indicate whether your tumor was Luminal A or Luminal B?
https://librepathology.org/wiki/Mucinous_breast_ca...
More 3D images of mucinous tumors:
http://www.pathologyoutlines.com/topic/breastmalignantmucinous.html
I'm with you on our annoying post-nasal drip, mostly during winter months & springtime, especially during lower humidity. There's a nasal spray of saline solution that seems to help.
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KT, that's super cool that your lesions were reported to be contained within the same quadrant, which is a positive attribute. The decision for chemo always seems to be a tough call for mucinous patients. As I mentioned above, you could ask your pathologist or oncologist if your mucinous was Luminal A or the more aggressive Luminal B.
My tumors were all Luminal A, and chemo had not been recommended by the oncologists I had consulted with, even though I had a small amount of conventional IDC-nos mixed in. I had a mix of Grades I-II, although highly ER & PR / +.
Mucinous carcinoma of the breast: iconographic essay2013 Jul/Ago;46(4):242–246
http://www.scielo.br/pdf/rb/v46n4/0100-3984-rb-46-...
Some good general info for new patients:
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Repost of a very interesting study regarding cellular content ratio % ...
Mucinous carcinoma of the breast in Japan. A prognostic analysis based on morphologic features
1 March 1988Full publication history
http://onlinelibrary.wiley.com/doi/10.1002/1097-01...:5%3C989::AID-CNCR2820610522%3E3.0.CO;2-E/abstract#publication-history
(ONE OF THE LINKS ABOVE SHOULD WORK)
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Pure Mucinous Breast Carcinoma: A Favorable Subtype
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I have never even heard of luminal a and b!! I have read my pathology reports numerous times and I don't recall seeing that. I will read through those links. Is it's not on my report is there a specific test to ask for
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Obsolete,
Thank-you for the links, the pictures were awesome! There was no mention of luminal A or B in the surgical pathology report. After having another look at the pathology report, it appears that IDCIS was present in the tumor.
Further Classification of DCIS: EIC negative
Architectural Patterns: Cribriform
Nuclear Grade: 2/3
Comedo Necrosis: Absent
Extent in Tumor (%): < 5%
Extent away from tumor: Present
Note: DCIS is also present away from the invasive focus, 4mm from lateral margin
Extent of Tumor:
Skin: Present
Skin Invasion: Invasive carcinoma does not invade the dermis or epidermis
Dermal Lymph-Vascular Invasion: Absent
Nipple: Nipple not present ( this is why I thought I didn't have a nipple. I may still have it! ;0) Too afraid to look! )
Skeletal Muscle: No Skeletal Muscle is present.
Margins: Distance from closest margin: < 1mm ( My new breast surgeon is very concerned about this! )
Note: Acellular mucin pools focally about the anterior margin. ( does this mean there are still mucin pools left in the breast?)
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KT, please don't feel bad. The Molecular Subtype (eg Luminal A, Luminal B, etc) unfortunately is not usually included in most BC pathology reports. For example, only 1 of 4 of pathologists had included the molecular subtype in my path reports. Training & experience differs among breast pathologists, which is why there is a lack of uniformity in pathology reports. But that one pathologist who discussed it, whom I had consulted with, had placed heavy emphasis on the molecular subtype. He had mentioned that molecular subtype can sometimes be the deal-breaker in surgery & treatment (chemo) decisions, but he had not mentioned exactly how he had determined or what tests solidified my tumors' molecular subtype. At the time, I had been overwhelmed with information. As you know, it's a steep learning curve.
Please do NOT feel that your breast pathologists are off-limits. The pathologists I had consulted with had all been excited to share their knowledge, consult on decisions, answer questions, tour their path lab, etc. The pathologists were the most resourceful of all the MD's I had consulted with. As a courtesy I had kept my surgeon and oncologist informed.
Molecular Subtypes of Breast Cancer
http://ww5.komen.org/BreastCancer/SubtypesofBreast...
Understanding your results
BluePrint Provides Deeper Insights into Your Patient's Tumor Biology
Gene expression analysis has confirmed the heterogeneity of breast cancer, revealing it to be a disease with intrinsic subgroups that can be uncovered by genomic profiling. The BluePrint 80-Gene Molecular Subtyping Assay was designed to distinguish the Basal-type, Luminal-type and HER2-type (ERBB2) functional molecular subtypes of tumors.12
BluePrint Luminal-type Result
Luminal-type breast cancers are characterized by gene expression of luminal epithelial cells that line the breast ducts and glands. The Luminal-type cancers are typically hormone receptor positive tumors and therefore responsive to endocrine therapy. A Luminal-type molecular subtyping result means that the tumor most closely resembles the Luminal-type intrinsic subtype. Patients classified as MammaPrint "Low Risk" and Luminal-type can be expected to have a clinical course similar to luminal A, usually treated with endocrine therapy. Patients classified as MammaPrint "High Risk" and Luminal-type can be expected to have a clinical course similar to luminal B patients who usually benefit from more aggressive treatment which may include chemotherapy.
http://www.agendia.com/healthcare-professionals/br...
http://www.breastcancer.org/symptoms/types/molecul...
See also this thread ....
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BB101, your commented earlier that having BC feels like an "out of body experience" .... I couldn't agree more with your comment. Yeah, an out of body nightmare .... but I do promise you that once you have finished with your surgeries, you will feel like you were reborn .... cleansed ... purified. That's how I felt. It does take a while for us BC patients to embrace the disease, but it DOES GET BETTER.
And you're more than welcome! We're all connected in this Mucinous BC experience together. Nobody is alone. We're all here for each other. So I thank all you BC ladies for being there for me also.
Thanks for sharing your pathology notes. I note that you had DCIS within the tumor and also a close distance from your tumor. I had multi-centric DCIS also, but it was Grade-III. You had Grade-II (2 out of 3), which is intermediate. But your upcoming BMX will ensure that any other DCIS or Mucinous clusters, which can sometimes jump around, will all be removed. And your report mentioned "Comedo Necrosis: Absent", which is a great prognostic factor.
Your decision to have a BMX surgery is an EXCELLENT one!!! Your margins were teeny tiny ... I had been told that 5mm margins all around were necessary, but opinions on this vary. You're making the right decision in my opinion!!! Unfortunately, it means more surgery, but some of us (including myself) had found BMX surgery to be much easier and less painful that lumpectomies.
You noted NO LVI (lymph-vascular invasion) present.... this is excellent news!!
Some of us also had multi-focal & multi-centric pools of mucin, some with & some without cellular content, scattered about a breast quadrant. This is common with Mucinous Carcinoma, I had been told. Your bilateral mastectomy will resolve more vacant or benign mucin pools, which is sometimes seen as in transition to or similar to "in situ" (DCIS) disease. Your upcoming BMX will remove the majority of your remaining breast tissue and thus will remove any & all remaining mucin pools, if any. More info ...
Breast-nonmalignant Benign tumors / changes
Mucocele-like lesion (MLL) of breasthttp://www.pathologyoutlines.com/topic/breastmucoc...
Benign mucocele-like lesion of the breast: how to differentiate from mucinous carcinoma before surgery.
https://www.ncbi.nlm.nih.gov/pubmed/15056171
Mucocele-like lesions of the breast: a long-term follow-up study
https://diagnosticpathology.biomedcentral.com/arti...
Mucocele-like Lesions Diagnosed on Breast Core Biopsy: Assessment of Upgrade Rate and Need for Surgical Excision
https://academic.oup.com/ajcp/article/138/6/783/17...
Benign mucocele-like lesions of the breast: revisited
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http://surgpathcriteria.stanford.edu/breast/mucoce...
Mucocele-like Lesion of the Breast
- A microscopic mucinous cystic lesion of the breast, at least partially lined by bland epithelium, in which mucin is free in the stroma
- Pools of mucin in stroma variably lined by bland epithelium
- May be lined by ordinary or hyperplastic ductal epithelium
- Designate simply as mucocele-like lesion
- If lined by atypical epithelium, designate according to degree of atypia:
- Atypical hyperplasia with mucocele-like lesion
- DCIS with mucocele-like lesion
- May be lined by ordinary or hyperplastic ductal epithelium
- If groups of cells are floating in mucin they must not have complex architecture
- If present, they are individual cells or strips of cells
- Almost always a microscopic lesion
A number of low grade or benign lesions are characterized by pools of mucin
Mucinous DCIS Extracellular, intralumenal mucin in a duct lined by DCIS, no mucin in contact with stroma DCIS with mucocele-like lesion Typical DCIS with discrete areas of rupture resulting in mucin pools in stroma, no groups of cells floating in mucin ADH with mucocele-like lesion Some but not all features required for diagnosis of DCIS with discrete areas of rupture resulting in mucin pools in stroma, no groups of cells floating in mucin Mucocele-like lesion Pools of mucin in stroma variably lined by bland epithelium, usually no groups of cells floating in mucin (if present they are normal ductal cells and are not complex), almost always a microscopic lesion Mucinous carcinoma Mucin in contact with stroma, neoplastic cells floating in mucin Nodular mucinosis Nodules of stromal mucin, no epithelial component, subareolar Clinical
- Nearly always a microscopic lesion
- Clinical significance is determined by the nature of the lining cells
Grading
Grading
- Usually low grade cytology but all degrees of atypia may be found
- If lining is atypical, designate as one of the following:
- ADH with mucocele-like lesion
- DCIS with mucocele-like lesion
Staging
- Not applicable
Lists
Mucin Rich Lesions of the Breast
- ADH with mucocele-like lesion
- DCIS with mucocele-like lesion
- Mucinous carcinoma
- Mucinous DCIS
- Mucocele-like lesion
- Nodular mucinosis
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Sample Luminal-type reports:
http://www.agendia.com/media/24Feb15_BP-Luminal.pd...
http://www.agendia.com/media/24Feb2015_BP-Luminal-...
Sample MammaPrint "Low Risk" Report:
http://www.agendia.com/media/MammaPrint_LR.pdf
Sample MammaPrint "High Risk Report:
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Now my head is spinning from this DCIS stuff. So my mucinous was the biggest part of my cancer and there were multiple spots. But they were Grade 1 and specifically the mitosis was Grade 1. But then there is a section that says DCIS present, negative for extension intraductal component. Estimated size (extent) 1cm. Archtechtual components comedo, macropapilary, cribiform, solid. Nuclear Grade II (intermediate). Necrosis: present, central (expansive "comedo" necrosis.In an earlier part of the report is says DCIS represents less than 5% of the cancer. No one has seemed concerned. But this talk of necrosis has me concerned--is my cancer more aggressive than it appears? Would this suggest I need chemo even though the MC is grade 1 and I had a simple mastectomy with clear sentinel nodes?
Hope the stuff makes sense above--it would be easier if I could just upload a photo of the report!!
PS this is an awesome thread. It is so nice wo be able I talk to other people with MC!!
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KT,Hi, and yes this is a great MC thread, thanks to you MC sisters and our seasoned member, VR, for her contributions.
Keeping DCIS in perspective with our invasive MC components can be rough. I, too, had countless sleepless nights of head spinning while trying to navigate the huge learning curve. It's not fun. After a while, it gets easier, I promise you.
As you know, your Grade-I on your Invasive MC is most important. Great news! More great news is your super low score of 1 on mitosis, the single most critical prognostic factor, from what I understand. (I had 3 mitotic activity on my almost 3cm papillary tumor, UGH)
Kkkk0
