Mucinous Carcinoma of the breast
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flannelette...Glad to hear that you're also doing well.
Keep us posted when you get the report. 0 -
Hi all my online MC sisters. I have just returned from 2 weeks holiday in Western Australia that has rejuvenated me. So I will update all the prayer issues as I get a chance to read them & digest the information.So many blessings, positive thoughts or whatever will support you the best. Oh goodness as I look at my sign off I've just realised that I celebrate my first year of MC on the 20th Oct, I am doing so well I forgot all about the date tomorrow, isn't is great to be cancer free on the year of your first (and only I hope) diagnosis.
TricianneAust Diagnosis: 10/20/2010, DCIS Pure Mucinous Cancer , 2cm, Stage I, Grade 1, 0/3 nodes, ER+75% /PR+ 75%, HER2-. Lumpectomy,Tamoxifen,25 x radiation, Vit D deficiency being treated. Feeling fantastically normal & healthy.
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Tricianne...Congrats!
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I was dx at age 40 in March 2010 (via stereotactic bx, mammo, MRI and PET) with multifocal, pure, mucinous poorly defined 1.4 cm invasive breast cancer. High Grade DCIS was also present and showed cancerization of the lobules and characteristics of invasion. Lymph nodes also appeared significant but did not meet the threshold for malignancy in either PET or MRI. Mass and DCIS both highly ER +, PR + and Her 2 +. Began on neoadjuvant chemo (AC -T and Herceptin) - AC for four treatments, Taxol for 12 plus Herceptin, now Herceptin for the next year and Tamoxifen for five. Following Surgery (bilateral with free tram) - mass was 1.1 cm and identified as Grade II. Lymph nodes all negative (13). Secondary to the favorable outcomes associated with Pure Mucinous tumors I am struggling with my treatment decisions. I cannot find much literature out there about being triple positive with a mucinous tumor. Any ideas? Replied JHU's Breast Center Reply 10/24/2011 I am not 100% sure of what your question is, but given your young age, even with a more favorable histology, the HER2 being positive would probably push most to recommend chemotherapy with Herceptin, and the ER/PR positivity also would merit tamoxifen for five years. Genetic counseling would also be something that you should consider for BRCA testing. You are right that there is not much data on mucinous breast cancers in this setting, but again in the absence of data, your young age and receptor status makes the choices you took seem very appropriate and reasonable. Hope this helps and best wishes! Above is Lillie Shockney, RN, at Johns Hopkins website's answer to this important question about a pure mucinous breast cancer that was HER/neu +.
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Was diagnosed 0n 7/8/11 with mucinous carcinoma in left breast, lumpectomy on 8/2/11 with re-excision due to postive margins, pathology report showed low and intermediate multifocal DCIS on four margins, tumor was .9 cm, DCIS had not been seen on mammagram or MRI, bilateral mastectomy with first stage reconstruction on 9/8/11, pathology report showed flat epithelial atypia in the right breast, nodes negative on right and left, OncotypeDX came back at 27, progesterone receptors were positive on the original test from the biopsy but changed to negative in the results from the Oncotype DX. Oncologist is recommending four rounds of chemotherapy over 12 weeks. When I was diagnosed, I was told this was a "good kind of cancer" and that other than the lumpectomy and radiation, I probably wouldn't need any additional treatment. Radiation is off the table after the bilateral mastectomy but at each step the results have not been what was expected. I'm heading to a NCI designated research center for a second opinion next week before making the decision on the chemotherapy. Here's my questions for the wonderful women on this forum:
Did any one else have hormone receptors change from positive to negative with different tests?
My Mom may have had DES while she was pregnant with me (I have a septate uterus and experienced multiple miscarraiges 20+ years ago). I've noticed DES mentioned on this thread. Is mucinous carcinoma more common in DES daughters?
The Oncotype DX estimates a recurrence percentage of 18% with possible benefit of 5-7% from chemotherapy (with endocrine therapy to follow, as I understand it). This seems to be worth it to me but want the second opinion to be sure I am on the right track. What do you think?
With mucinous carcinoma, is it common to keep getting bad news and needing more extensive treatment? I'm still waiting for the "good kind of cancer" news again.
Thanks for any information you can provide.
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Golden01... Sorry that you have to join us. If you have read this very long thread, you will see that mucinous breast cancer has many presentations. While I haven't noted on this thread anyone's hormone receptors change when further tested... However, there have been on other threads, women who have experienced that.
With the Oncotype DX test only available in the last few years, it is hard to say whether or not chemo would have been offered to you, just a short while ago. In fact, the NCCN breast cancer treatment guidelines just started recommending in it's guidelines the Oncotype DX test for ER+ IDC tumors. They did not, however include the test for tubular and mucinous. But it seems you were very fortunate to have had the test because it identified that your tumor's score was in the high intermediate range and it is likely that chemo would be of benefit to you. While mucinous bc is usually a favorable type of bc, it is important to remember that classifying it pathologically is still very subjective. In your situation, the Oncotype DX test is giving you more information about the specifics of your tumor. Surprisingly, women on these threads who have had grade 3 tumors, from time to time, will have low scores and some women with what was believed to have indolent tumors had high scores. The bottom line is you are getting a second opinion which should help you decide your treatment plan.
Regarding DES, I don't think there are any studies linking it to mucinous bc. For that matter, there are few studies on mucinous bc.
Good luck and keep us posted on your treatment.0 -
Hi Golden01,
I am always sad to see another woman join us but send you a warm welcome.
I was dx'd with MC in May. I had 2 paths evaluate the slides and one classified the samples as Pure while the other said Mixed. I still don't know which it is but at least the entire 1 cm was not made up of cancer cells and that helps me to sleep at night. I also had invisible DCIS...6 cm of it. I opted for BMX because I knew I would worry about lurking invisible DCIS in the 'good' breast. As it turned out, there were proliferative fibrocystic changes but no cancer. The IHC staining for my tumours cells came back PR- but the sample that Oncotype dx received tested highly positive. While this is unusual, it does happen. Tumours are heterogeneous, meaning different slices can have different characteristics. The methods used are different and I have been told that one evaluates the protein for the receptor while the other evaluates messenger RNA. In any case, I did not do chemo, even though I wanted to, because I was *highly* discouraged from it by several MOs. My oncotype dx came back at 16 and my weapon of mass destruction is Tamoxifen right now, although with the uncertainty of the PR, I am having a hormone panel done, then we will try Zoladex injections and possibly an ooph. Tumours with mixed hormone receptors are slightly more inclined to be Tamoxifen resistant and relapse more frequently than ER+/PR+. However, they have been shown to respond very well to Aromatase Inhibitors.
So, if I were you, I would:
a) establish whether your tumour is Pure or Mixed,
b) ask if there was evidence of LVI,
c) find out your mitotic rate or ask to have the Ki-67 staining done
d) get several opinions
e) I would seriously consider doing chemo with such a high Oncotype dx and the mixed receptors
Best wishes to you!
PLJ
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Thank you for such quick responses. The pathology reports indicate just mucinous so I think it's "pure" but will ask for sure when I see my doctor. My KI-67 was 20% (moderate) and was another reason the oncologist is recommending chemotherapy. What is LVI?
I've taken time to read all 17 pages of this discussion and want to thank everyone, especially voracious reader, for posting so many articles!
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LVI: Lymphovascular Invasion, another means by which cancer can travel and metastasize.
My original path report said Mucinous Carcinoma and did not differentiate between Pure or Mixed. I have spoken with the original pathologist who maintains that it is Pure but a path at another centre viewed my slides and did not feel the tumour met the criteria for Pure. As such, I assume it is Mixed, otherwise there would be no question.
Yes, I, too, read all pages of this thread upon dx and valued each experience and pearl of wisdom shared by every member. VR is a very special contributor and is like the glue that holds this thread together.
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PLJ...Great explanation! The torch has been passed!
I want to add, that I am thrilled that everyone has been so communicative and is documenting their experiences for future journeymen. I think we now have a compass..... 0 -
Thanks for helping me learn about "LVI". I checked my pathology reports and on the report from the Lumpectomy, the report indicates Lymph-vascular invasion was not identified. The report from the bilateral mastectomy a month later is much shorter and doesn't mention LVI one way or the other. I see my breast surgeon early in November so will ask him about it then. Interesting to me, is that an "addendum" was issued to the pathology report from my lumpectomy changing the diagnosis on one of the margins from "low grade ductal carcinoma" to "low grade ductal carcinoma in situ". That probably won't make any difference on my next steps but shows that someone must be reviewing something!
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hello voracious reader and others here - well I fiinally got my old path report from 2008 from after the mx and sure enough - mixed ductal and mucinous. I figured I'd won the whopper of the year award and it was indeed 8cm x8cm x4cm. it's been such a mystery....like, how come I'm alive??? why didn't anyone explain to me about the mucinous part?I guess I was overjoyed to find it hadn't gone to any lymph nodes or vascular invasion I was sort ofoverjoyed and basking in the unexpectedness of it all
there was a whole big pile of DCIS. and get this - SBR score 9 out of 9 (isn't that very, very bad?)
nuclear grade: high. mitotic rate: high. necrosis: comedo. yikes.
anyway, hope I can chat with you about this. seems like there were a whole bunch of different kinds of bc each doing their own thing?
Arlene
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flannelette...I am a little confused with regarding your pathology report. Was the DCIS component part of the 8 cm tumor or was it a separate tumor? Frequently mucinous breast cancers will often have a DCIS component. Mine did. Looking at MY pathology report it reads that there was a "minor component" of DCIS...not sure if it was part of the tumor or separate....Hmmm..
While you presented with "mixed mucinous" it is quite reassuring that despite it's size, it didn't enter your lymph nodes despite the very high SBR score. Remember, inside of mucinous tumors there is also a gelatin which makes the tumor bulky. So we tend to have larger tumors. That's usually why with traditional tumors the threshold for chemo is based on a smaller sized tumor. Nonetheless, you've had aggressive treatment for a mixed bag of a tumor and despite the high SBR score, you should, IMHO do well. Amazing how mucinous tumors vary. Thankfully, there's a treatment protocol tailored for our individual presentations.
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Hi Voracious reader and thanks. yes, the DCIS was "present, extensive - cribriform and solid with mucinous features nuclear grade high, necrosis comedo, at least 50-60% of tumour volume" My surgeon came by early the morning after surgery specifically to tell me - "it looked like a whole lot of DCIS mixed in with IDC" - this was meant to reassure me, and it did, or else he wouldnt have come by.
What is SNB? What I don't understand is, with all this aggressive stuff also going on, why didn't it go to my lymph? well, I mean, that's a question no one can answer, but do you think the mucin "blocks" it in some way? like the aggressive little buggers can't get past the gelatin? ridiculous sounding,but in a nutshell, perhaps that's what "saved" me? knock on wood
I had 6 rounds of FEC, rads & now now close to 3 yrs into arimidex. After watching carefully for "little bumps" on my mx side, there was a point where my surgeon just said - go ahead get reconstruction if you want - which I did not - and that was after about 2 yrs. What I understood from that was he was no longer concerned with recurrence. that felt so good.
After all this, I became an optimist rather than a pessimist. it totally changed my life.
Arlene
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SBR is Scarff-Bloom Richardson which refers to the scale that determines how aggressive the tumor is. SNB refers to Sentinel Node Biopsy.
Flannelette...I agree with what you say about the doctor trying to reassure you. You had a large tumor, with an aggressive component, but with a very large docile component as well. So glad that you are doing well and are happy. By the way, how were you diagnosed? We're you receiving annual screenings or was this diagnosed in between? Can't imagine it being missed on an annual screen but also can't imagine it growing that large between annual screenings.0 -
Morning VR and thanks for your post. I meant SBR. It was caught by annual mammogram - and I do mean annual for about 12 years. The surgeon was amazed and checked out earlier mammos to see if there had been some mistake. but no. and at the mammotime, I was palpated by the nurse with the Ont. Breast Screening centre and she didn't feel it! Nor could I. It was all flabby & just part of my breast. Only my oncolgy surgeon could feel it, pointing it out to the resident who was there learning. One thing I did feel, however, was when I poked my finger super hard into a spot near the nipple - which I discovered accidentally before the mammo - I woud hit a hard spot. so I made sure I went for my mammo which was scheduled anyway. I was called next morning for further pics.
somebody then bungled my paperwork and despite all this in April, I didn't have the biopsy till end of June. I had been phoned by the radiology dept at KingstonGH to tell me I didnt need a biopsy! My dr was reading through my file one day and noticed no biopsy report. she phoned me immediately to ask why. When I told her she nearly flipped. I had a biospsy very, very soon. By that time my nipple would bleed spontaneously. The whopper did not actually come out till end July. thankyou, mucinous cells, I think you saved me.
And thanks for your help, VR
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Flannelette...Wow! Now that's some story! Thanks for sharing!
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Hi ladies! I did not have a mucinous carcinoma (I had a grade 3 ductal carcioma) - but I specialize in diagnosing breast cancers as a breast pathologist and I would offer one word of advice to anyone with a diagnosis of mucinous caricnoma: a second opinion on your pathology. You want the second opinion to be by someone experienced in breast pathology since your whole treatment will be based on this info! Mucinous carcinomas are a special type of breast cancer with a good prognosis - but only if strict diagnostic criteria are applied. In my opinion, a true mucinous carcinoma should not need an Oncotype either - if it really is mucinous carcinoma it should be low grade and not likely to respond to chemo regardless of what the Oncotype shows- and a second path opinion is much cheaper. Don't get me wrong, Oncotype can be very useful in other cases. As for "fitting the typical profile" of a mucinous carcinoma - I have seen it in many ages - I guess cancers don't read the textbooks!
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Thank you RedSunshine for posting! I have REPEATEDLY mentioned on this thread how important it is to get an accurate pathology report because treatment making decisions are dependent on it. The problem here is that pathologists don't see many mucinous breast cancers, compared to IDC-NOS...so there is some inexperience involved and subjectivity. Furthermore, there is confusion because there is no standard way of writing it on a report. In my case, we did the OncotypeDX test to CONFIRM what we already knew. My OncotypeDX score came out exactly at what the average mucinous breast cancer would score... a 15.
Once the pathologist determines the type of mucinous breast cancer, I wish there was a definitive code for pathologists to use in their reports when describing it. And, I wish more radiologists and pathologists were experienced in its features. And of course, there should not be ANY subjectivity when looking at it.
Good luck to you to! Sounds like you're doing well! Thoughts and prayers to you! And thanks for chiming in. Feel free to come back and give us as much info as you like. The travelers here need to hear as much as possible and as many times as possible about this rare type of breast cancer.
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Hello everyone!I hope you are doing well. I`m back and worried again:( My mom had a bone scan and something suspect came out on her stern. She needs to get another scan for more details. The doctor says that it can be a lot of other things not related to her BC and that we need to rule those out and find out what it is, can it be a fracture? I am so worried that the BC has spread.... I have to wait till Mon for the next scan.Soooo worried...God bless all of you!
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buburuzaa.. Please hang in there.I know it is a scary time until you get a firm idea of what your mom is dealing with. Thoughts and prayers to you and your mom and family. Keep us posted and remember, we will be thinking of you!
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Hi all my MC sisters and others who log in. Life has been so busy with family weddings and overseas visitors etc, all the "nice things" of life that I just key in quickly to update my prayers for you all but haven't given myself time to send you a message. So briefly its great to keep up with you all while I can,buburuzaa, we keep your mom and your family covered with prayer, its seems to be one worry after another for you, so its good that you let us know whats bothering you. Some of you gals are so knowledgeable about all the facts ( I just learn so much) I will have to stick to life experiences & giving you emotional & spiritual support. Thanks Redsunshine for your valuable professional input & Voraciousreader for continuing on with your info.Lots of kind thoughts to you all.Blessings Tricianne
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It's nice to hear from a professional here. My first biopsy was on the tumor that turned out to be mucinous. I heard all the junk about how it was 'the good kind,' etc. What I did find interesting was how interested my MO was with viewing my slide. I guess my slide was shown to the tumor board and they were fascinated at looking at the lazy cancer cells just floating around. After BMX, pathology still showed pure mucinous. But surprise, IDC was found during surgery. We already knew there was a lot of DICS. The mucinous wasn't much of a concern by that point. The DICS turned out to be high grade and the IDC mid grade. After all that I keep wishing it was just the mucinous! I found it hard to adjust from the not so urgent pre-surgery to the fully revealed post surgery urgency. My RO had the pathology reviewed again as I was in a fully grey area on whether radiation would benefit me. The answer was no, which I was very thankful for.
I think it would be nice to have mucinous info updated on the web. I was 39 at time of diagnosis. First I heard how unusual it was for me to have it, since it was found more in older, post menopausal women. The more I talked to people, the more I hear it's now being found across all age groups. And that it's not just by itself.
I'm waiting on getting my 3 month check up post-chemo. My tumor markers went up during chemo but my MO told me not to worry. :P We are waiting to see what they are at 3 months! And go from there. I'm wanting to find my new normal, but it's going to take some more time.
BTW, I found my tumor. I'd never had a mammogram and I found a lump. I waited to see if it was just PMS breast change, but it didn't go away. I wasn't surprised to hear it was cancer, and I was bizarrely calm about it. Maybe because I was told how much I had the 'good kind?' It was the IDC which wasn't detected in the ultrasound or MRI that threw me for a loop. The treatment that bothers me the most is the axillary node disection. (that's putting it mildly, folks!)
Ah, well. I feel comfort knowing you all get it.
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cider8...I think the reason why more and more younger women are being diagnosed with mucinous breast cancer is because more women are now getting screened. And, most definitely, this should be evaluated more closely by the epidemologists.
Over and over again, I have said on this thread that the most important part at diagnosis is getting an ACCURATE pathology report. Furthermore, I think the radiologists can also be doing a better job at finding it...but that's another story.....
Thanks for posting. Hope you're doing well and get a good report!
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Dear All,
I've been reading all your post since I've got diagnosed 11 Oct 2011 and have been encouraged as well as informed alot. I'm 31 and has had lumpectomy 27 Oct 2011. It is a mucinous carcinoma, stage IIa, 2.5cm, grade 1 and no lymph node involvement.
I'm still in a midst of discussion with my oncologist to decide whether I need chemo or not. I didn't do Oncotype DX as in my country, to get this test it needs to be sent to US and it is pricey (insurance doesn't cover this test).
Earlier on, I was under impression that I don't need chemo, because this type of tumor doesn't response well to it. However, yesterday my onco was clining over doing chemo due to my age, she said it might give 3-4% chances to reduce relapse. Chemo, if done will be 4 rounds of Taxotere Cytoxan (TC).
Anyone has experience with this and how's the experience with chemo? I'm dredging over it because I just don't like the idea of destroying your 'healthy' body while knowing this type doesn't response well to chemo.
After chemo, my onco told me to do rads 3 1/2 weeks and zoladex 2 years and tamoxifen 5 years.
Any advice/ suggestion/ input? ^help^!!
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Hi,
sorry you have joined club mucinous.
Our DX are very similar in regards to stage, grade.....do you know if your mucinous tumor is pure or mixed? This is a very important piece of information. It influenced my decision with regards to the chemo. I declined it.0 -
Hi bellydancer, nice to hear from you.
Mine is pure mucinous with no signs of DCIS and LCIS. How you have come to decision not doing chemo?
My oncologist said the reason she proposed chemo is because of my age, she said will I not regret not doing chemo now if in years to come it recur?
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Figlia...If you are unsure about your treatment protocol...perhaps you would like to get a second opinion. Or ask your doctor to present your case to a tumor board. That is a group of physicians who will review your case.
If you look at the 2011 NCCN breast cancer treatment guidelines, you will note that chemo is not recommended for tumors less than 3 cm that are node negative. Your tumor was 2.5 cm. However, the NCCN guidelines are just that. They are "guidelines." At 31, you are VERY young, so that is why your doctor is recommending a more aggressive treatment. I am not too familiar with chemo, but the regimen that she is recommending is considering a "lighter" chemo. Also, the ovarian suppression, while still being studied, IS recommended quite frequently. I am doing ovarian suppression for my Grade 1 tumor as well.
Sorry you have joined us on this journey. Keep us posted on how you're doing. Thoughts and prayers to you!
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Ann Oncol. 2011 Oct 29. [Epub ahead of print]
Outcome of special types of luminal breast cancer.
Colleoni M, Rotmensz N, Maisonneuve P, Mastropasqua MG, Luini A, Veronesi P, Intra M, Montagna E, Cancello G, Cardillo A, Mazza M, Perri G, Iorfida M, Pruneri G, Goldhirsch A, Viale G.Source
Research Unit in Medical Senology, Department of Medicine.
Abstract
BACKGROUND:
The identification of special types of breast cancer might be of value in assessing prognosis and predicting response to therapy.
METHODS:
A total of 7372 consecutive patients with immunohistochemically defined luminal invasive breast cancer operated at the European Institute of Oncology between 1997 and 2005 were included. We then explored patterns of recurrence by histological type. Median follow-up was 5.8 years.
RESULTS:
Tumors from 5707 patients were classified as invasive ductal cancer (IDC) not otherwise specified (NOS), 851 lobular, 338 mixed ductal and lobular, 250 cribriform, 143 mucinous and 83 tubular carcinomas. Compared with IDC NOS disease-free survival (DFS) was significantly longer in patients with cribriform tumors [5-year DFS 97.9% versus 87.4%; hazard ratio (HR) = 0.48; P = 0.015) and in pooled cribriform plus tubular carcinomas (5-year DFS 98.7% versus 87.4%; HR = 0.45; P = 0.005). Mucinous tumors presented similar DFS if compared with IDC (5-year DFS 93 % versus 87.4%; HR = 1.03; P = 0.91). Conversely, DFS was poorer for patients with lobular carcinoma (5-year DFS 86.8% versus 87.4%; HR = 1.27; P = 0.01).
CONCLUSIONS:
The diagnosis of tubular, cribriform and lobular carcinomas carry distinct prognostic implications. The identification of these special types has a significant utility in luminal breast cancer and should be considered in therapeutic algorithms.
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Figlia,
I've done 4 rounds of Taxotere/Cytoxan chemo recently. It was VERY tough on me. I was wondering if the light course had such an impact on me, how heavier protocols should feel like. My diagnosis is stage IIb, no limph nodes, grade 1, 5cm mucinous IDC, Oncotype DX 19. I went through the chemo because of the size and oncotype and also no doubts like "what if" in case I have a recurrence. But I am still bitter thinking that it won't be of any benefit to me due to the type of cells and the grade.
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