Mucinous Carcinoma of the breast
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Thank you VR!
I was going to ask, if you didn't mind... On your ER/PR + and more specifically, the (+1) after the HER2- ? I feel so dumb sometimes, lol, I feel like I should know some of this by now...Edited to add: Not that I don't read and do lots of my own researching... I am getting SO forgetful anymore, and retaining info. It gets so dang aggravating!
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Alive! LOL! You should only know how forgetful I am at times and how many questions I ask! No question is unimportant!
HER 2 "negative" would be labeled 0 or +1. That means there is no or a slight amplification of the HER2. HER2 +2 is considered equivocal. That means it cannot be determined if it should be classified positive or negative. In the last few years, there have been better ways to measure it, so fewer patients are labeled +2. And, +3 means it is HER 2 positive.
Presently there is a clinical trial for "low HER 2." Patients that meet certain criteria who score a +1 or +2 are receiving Herceptin. The trial began after I was diagnosed. But I wouldn't have qualified because my tumor would have put me in the lowest of low risk category and therefore the risks would have outweighed the benefit.
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My pathology report is back and the surgeon said everything was good. He agreed I may have been lucky enough to only need double mastectomy if the oncotype Dx comes back low. My tumor was less than 1 cm and grade 1. I should get the oncotype result from the oncologist on Tuesday. I'm a bit nervous about that because as you may recall my ki-67 was 69.
Anyway, I actually sat down to read the path report today and now I'm not even sure it is pure mucinous. The post mastectomy path report says "residual invasive ductal carcinoma. Well differentiated with mucinous features and adjacent organizing biopsy cavity. The tumor infiltrates the fibrotic stroma without mucin production (60%) and with prominent mucin production (40%)."
My old path reports from the initial core biopsy said "infiltrating ductal carcinoma mucinous type". This initial core biopsy was sent to a second lab at my request to be sure it was "pure" (the word had never been used but the first path report seemed like it was because it said mucinous type). The 2nd core biopsy lab report said "invasive ductal carcinoma with mucinous features and intermediate nuclear grade. Whether this represents a pure invasive mucinous carcinoma or invasive ductal carcinoma with mucinous features will be determined after evaluation of the excised tumor". The explanation I got at the time was that they need 100% of the tumor to decide if it was pure mucinous type which made sense to me.
So what do you think? Am I reading the post mastectomy report correctly that it is only 40% mucinous? I am sure that will put me in a whole new set of guidelines for treatment!
Did the rest of you have a pathology reports that actually said "pure"?
On a side note, pertaining to the above post, my her2 gene was +2. The FISH amplification gave a her2/chromosome 17 ratio of 1:1 which is a negative result. I guess that is what VR meant about the +2 and better ways to measure it. (Meant to help clarify, not confuse).
Thank you all so much for your support and knowledge. This site has helped me so much!!
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green..you want to know what I think? I've said this before. There should be a uniform way of describing pathologies. What I would suggest is to call the oncologist and have him translate the pathology report for you. In my report there was no mention of "pure" mucinous cancer. My niece who is an oncologist did the translating.
Furthermore, I invision a future where these descriptions will become obsolete. We are heading in that direction. One day, as Dr Eric Topol describes in his book The Creative Destruction of Medicine, we will have clinical trials that are N of 1. That is... each person's tumor will be genetically analyzed and will be labeled with a number. That number will drive the treatment. No longer will clinical treatment plans be based on populations. Genomic numbers that will be more precise to the population and ultimately, precise to the patient will drive treatment.
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Green, I really had to push to get mine as a diagnosis of "pure". I wanted to hear it come out of their mouths!
Mine was IDC Mucinous Type. My radiologist said if it was anything other than pure it would have said IDC Mixed Mucinous
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Thank you VR. I thought I was losing it! It is crazy that the reports are so different. It seems a % of mucinous cells would make sense for all reports. I'll speak with the oncologist on Tuesday and let you know how it comes out. Thanks!
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You made me curious, I went back and looked at my pathology reports. My initial report after my lumpectoy just said "mucinous". I took that to mean (and I think my oncologist did too) that it was "pure" and, after a round of bad margins and a BMX, got my treatment plan figured out. Then, on this thread, probably in November of 2011 or so, I read a post on this thread from "Red Sunshine". She is a pathologist and wrote a book about her experiences with breast cancer that has the same name (it is a good read, one of the few BC books I could read when going through treatment). Her advice to those of us with mucinous breast cancer was to get a second opinion on our pathology slides. I had mine sent to the NCI research center in my state and the results came back as in "essential agreement with the outside diagnosis" except they would use the descriptive term "mucinous carcinoma, cellular variant" indicating they found a "high cell to mucin ratio" (they did not give a percentage as some have indicated from their reports). The report goes on to state that this differed from the "mucinous, hypocellular variant" (which is how they would describe the "pure mucinous)". The report states the "high tumor cellularity has been associated with a less favorable prognosis than that of the hypocellular variant". I agree with VR that it would be great if the pathologists used common language.
Bottom line for me, I have few regrets about the treatment plan I chose but having this information sooner rather than later would have helped me have more confidence as I made those hard decisions.
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Thanks for taking the time to look at your old report, Golden! I wish I knew who to lobby to make the reports all the same. Really crazy!
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Well, it's back to pathology for my tumor. We were correct that someone needs to look at the whole thing for a percentage mucinous. Still waiting on oncotype as well. Will keep you posted. Thanks, ladies. Sunshine, thanks for your post -it gives me hope that mine may still turn out mucinous. "Mucinous type" is how the first pathologist read mine.
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green...when a pathologist looks under the microscope, the percentage is exactly what they are looking for. The problem that I have with the pathology reports is that most of them do NOT clearly state the percentage AND more often than not, they will use flowery and inconsistent descriptions.
I'm going to be seeing our researchers at Sloan in September and be sure to ask the question about the lack of verbal consistency in pathology reports.
That said, in the past, the researchers have told me, because of the rarity of mucinous breast cancer, several pathologists should be consulted. They continued to tell me that no two pathologists agree 100% with your average tumor cells...so when you have rare cancer cells, the margin of disagreement can at often times be greater. That is also why our friends at Sloan prefer to look at the genetic composition. Less wiggle room for disagreement.
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VR, that will be something to look forward to; as per any new perspective about beneficial info regarding the differences of opinion/dx etc. Can't wait to see what you may find out! Thanks
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VR- when you say those at Sloan prefer to do the genetic composition, is that different than the oncotype dx? Also, if you would like some sample pathology reports to present to Sloan regarding the wording, I would be happy to provide my pathology reports. Feels like such a disappointment after thinking for 2 months that I only need to have mastectomy, now I'm facing all the hormone suppression etc. I just think it would have been easier to take if the first pathologist hadn't made it seem like it was going to be pure mucinous by just saying mucinous type. Do you know someone at Sloan that is working on this type that I might ask to review this case if the numbers come back in a way that makes us question anything? Thanks!
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green...I don't know any of the clinicians at Sloan. I know the researchers there who study rare breast cancers. As researchers, they do not give advise on treatment. That said, Sloan and the other leading research institutes, Anderson, Farber, Hopkins, etc, do have programs in place that will provide second opinions for pathology results and treatment decisions. Look at their websites or call them for more information.
Furthermore, Sloan LOVES to collect rare breast cancer cells for research. If you read this thread, you will note that the tumor samples need to be fresh frozen and sent to them quickly. Most samples are not preserved the way the researchers want them to be. I've tried to get the word out to surgeons that the normal way of preserving samples is the old way and they need to step up to the plate and have the samples frozen instead! It's really an issue of dollars and cents and ushering in a new way of doing things....
Which brings me to the next point. The researchers at Sloan go way beyond the OncotypeDX test in studying the cells. They are studying them on a genomic and metabolic level beyond any of our dreams. When I report back to all of you here, following my visit in a few weeks, I will be explaining some exciting developments! I can't explain any details now, because I'm going to have to understand the developments myself and then translate them I into laymen's terminology.
Finally, if you or anyone else would like to share your pathology reports, you are welcome to post them on this thread or PM me the report. I would love to share the reports with the researchers, so they can make suggestions about how we can clear up and clean up how the reports are written.
Anyone else who has any questions, please feel free to post here or PM me. The researchers and I do look at this thread when I visit and do try to get questions answered. Again, no treatment questions because they are not clinicians...but any other questions are welcomed!
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I would be delighted to send my pathology reports to you. Is there a way to include attachments in a PM?
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golden...try copy and paste... I'm going to Sloan in 2 1/2 weeks... So you have time to figure it out...
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Will do.
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Today, I had my visit with our rare breast cancer researchers at Sloan Kettering. Will let all of you know about my visit next week! I have to digest what I learned and then translate it. All I can say right now is what one of our researchers told me and that is the exciting discoveries are occurring rapidly. Faster than what they could have imagined just a few years ago...
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This is awesome news!!! Can't wait to hear your translation!
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can't wait!
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VR - Awesome! Look forward to it! Fantastic!
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Dear all,
I'm reposting here:
I am perplexed by my diagnosis of invasive mucinous carcinoma, which seems to carry a favorable prognosis and for which chemotherapy after surgery is not recommended, and my high oncotype DX score of 39, which makes chemotherapy essential. I am ER+, PR+ (though weakly so) and HER2-. My final path did show lymphovascular invasion in the tumor. Has anyone else had this discrepancy, or any thoughts about how to reconcile the conflicting data?
thanks.
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notto...sorry to hear about your diagnosis. Regarding your question, the answer is...yes...we have had a few sisters with what appeared to be aggressive mucinous tumors. My suggestion to you would be, if you are uncertain about having chemo is the following...
1. Have the genomic Mammaprint test done on the tumor. It measures more genes and will either confirm the OncotypeDX score or it might disagree with it.
2. Have a second lab "confirm" that it is mucinous. Perhaps it is "mixed" mucinous as opposed to "pure.". " Mixed" behaves more like traditional IDC, so one might expect a higher score if "mixed.
and finally, 3.... Have a tumor board review your case.
Keep us posted! I wish you well!
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Thanks voraciousreader, I will report back when I learn more.
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Okay....Thanks for your patience....I've been very busy....all good things! So let's begin with a recap of my meeting with our researchers at Sloan Kettering.Let me first begin by saying, they are all so welcoming and excited about sharing with me their research. In my life, I have NEVER met more motivated and brilliant people. They are so excited about their discoveries, they can hardly contain their joy. This news should make all of us delighted! The last point made, while saying, "Good-bye" on the corner of 68th Street and First Avenue, was that over the last three years, the discoveries are occurring faster and more frequently than they had ever imagined!
So let's begin...I'm going to start with their latest discovery:
http://www.ncbi.nlm.nih.gov/pubmed/25009010
Basically, what this journal article is telling us is that they have identified a "marker" in the blood that tells oncologists when a therapy for metastatic disease is no longer working. Presently, when a patient has metastatic disease, the patient undergoes scans to "see" if the treatment is shrinking the tumor. Often it isn't until a patient becomes symptomatic or has imaging before the treatment failure is noticed. Currently, we also have other blood "markers" to also identify progression, but until now, they haven't been very good at identifying progression. My oncologist isn't a great fan of doing blood work on his patients who don't have metastatic disease and for those with metastatic disease he finds the current blood tests unreliable. So, what makes THIS discovery so important is that they have identified a "marker" that is very reliable for physicians so that they could change the course of therapy BEFORE a progression is felt or noticed on imaging. Perhaps it will one day be reliable for early stagers as well. I cannot underscore how big this discovery is. It is HUGE. It required an expensive bottle of champagne to be opened and then used for toasting....many lives will be improved because of this discovery.
You may be wondering what this research has to do with "rare" breast cancers. Recall, being diagnosed with Stage IV breast cancer, right from the start, is rare. Most patients are diagnosed at an earlier stage and then progress. These researchers study those patients' tumors because they haven't been treated before and their cells are "virgin" so to speak. So, considering ONLY 10% of patients who get diagnosed with Stage IV from the starting gate....it is considered "rare."
Next....Mucinous breast cancer....
Okay...so, my first question was.......
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Why is there so much variation in the way pathology reports are written....especially for those of us with rare tumors?
Well, the simple answer is it depends are who the pathologists were trained by and where they were trained. One of the research pathologists whom I spoke with told me that she has seen pathology reports that went on and on and on. She thought it was, in most cases, UNNECESSARY to get into minute detail. She said the report should contain enough information to give clues to how the oncologist should treat the patient and give the patient an idea of their prognosis. Beyond that, she said that it's unnecessary to go into such detail. AND she said, (as I have mentioned before...thanks to Dr. Topol)...that one day soon, we will no longer be using the pathology language that we are all accustomed to...that is, the language that we use under our replies that describe the characteristics of our tumors. Our tumors will be described by "markers" that explain the genetic components of each of our individual tumors. Recall we are already doing some of that today when our ER positive sisters describe our OncotypeDX scores.
I showed them Golden's signature which read, "Hypercellular Variant." So, one of our researchers drew a picture to describe what "Hypercellular Variant" meant. The bottom line was that it was a flowery description with no treatment or prognostic information. Golden's OncotypeDX score was more important info that would drive treatment decisions and give better understanding about prognosis.
Which leads me to the DCIS component to many of our mucinous breast cancers.....
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Why do many of us who have mucinous breast cancer also have a DCIS component? Great question. No answer yet. What they are considering is the following....the breast tissue where the DCIS and mucinous breast cancer forms might be talking to cells around the area that CREATES AND ENVIRONMENT for both of them to form. This is a very exciting hypothesis. What they are beginning to think is that there is a lot of "messaging" going on. What exactly that "messaging" is....they are getting closer to understanding. None of them can say for sure right now why DCIS behaves the way it does and what eventually causes it to become invasive. They have clues and they already know which ones are more LIKELY to become cancerous sooner than later, BUT they don't know precisely how that happens. Could that same "messaging" environment be causing mucinous breast cancer to occur? Stay tuned....
Which brings me to the next great discovery. Why do they find mucinous breast cancer so INTERESTING TO STUDY???
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Most mucinous breast cancers are homogenous. That means in simple terms, when you look at mucinous breast cancer under a microscope, most look alike. And when you look at the genomics of a mucinous breast cancer, they pretty much look alike. Not so, with "traditional" types of invasive breast cancers. Since mucinous breast cancer looks "stable"...they think by studying it, they will have a better way of pinpointing what "drives" cells to become cancerous. Basically, they are looking for the "driver." If they can identify what they think is the "driver"....then the possibilities of THAT discovery will be MONUMENTAL for the study of ALL types of cancers!
http://www.ncbi.nlm.nih.gov/pubmed/23890733
Got it? HUGE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Furthermore....they also know that mucinous cancers occur in other body organs. Let's be straight about this because I know some of you were confused about this topic when I mentioned it before. I'm NOT referring to mucinous breast cancer that becomes metastatic and goes to other organs. I am referring to PRIMARY mucinous cancers that are discovered in other organs. There is mucinous ovarian cancer, mucinous kidney cancer, mucinous salivary cancer and so on...Primary mucinous tumors in other parts of the body. So what does this have to do with mucinous BREAST cancer?
Recall I discussed "messaging." Once they prove correctly that "driver" in the mucinous breast cancer....they will then take normal breast tissue and squirt some of the mucinous cancerous DNA into the tissue and see if mucinous breast cancer forms....if it does, then they know they have found the "driver." Then, they can look for that "driver" in the other types of mucinous cancer found in the other organs and see if they can replicate what they found in the mucinous breast cancers. If they are correct...then they can look for those "drivers" in more traditional types of cancers! Yay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Amazing????!!!!!!!!
Here is a taste of what is being studied in their lab in trying to find the "driver." That is...they are looking to find the "birth" of what causes a cell to become cancerous:
http://www.ncbi.nlm.nih.gov/pubmed/25185745
And here is what I'm talking about when I say we need a new and better way to describe pathology reports:
http://www.ncbi.nlm.nih.gov/pubmed/25118204
http://www.ncbi.nlm.nih.gov/pubmed/21421860
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Please take your time digesting what I have written before posting questions. I'm pooped just trying to digest this information!
I hope everyone is doing well! Thoughts and prayers to all of you!
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And...all of you should thank Komen! They are sponsoring our researcher for 3 years. He is devoting himself to exclusively studying mucinous Cancer thanks to them! Feel free to write to Komen. Money well spent on a very deserving researcher!
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Thanks, VR! I'll make a donation to Komen. They haven't always been at the top of my list for donations but I'll put them there this year.
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