Mucinous Carcinoma of the breast
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Ohmaryanna,
I am so sorry for all that you've going through! I hope you'll get answers soon. I had 10 sentinel? lymph nodes removed, I am assuming because they were all colored from the contrast dye and clumped together. I had cording and sensitivity/pain in my wright arm for at least a year after. Fortunately, I didn't develop lymphedema, although my arm had been swollen and tingly. There are areas that are still numb, but it bothers me much less, 6 years out. All in all, I regained complete function of my right arm and I am very grateful for that!
Sonialand,
RT, as far as my understanding goes, helps with local management of local recurrence. 3 tumors + 2 is a lot going on in one breast! I am sure you're waiting anxiously to learn more from the path report. Best wishes with your recovery!
Obsolete,
Today I was taking in the full swing of late spring in my neighborhood: tulips and daffodils and flowers I-don't-know to-name... Such BEAUTY! I'm sending you the vibe, along cu thoughts of good health! ... and thanks for all your posts.
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Obsolete,
I really appreciate the warm welcome. After appreciating this thread for two years, it feels good to emerge from the shadows of scrolling and thank you all for this lifeline - so much good information and clearly caring interaction. I am grateful for your list and link.
rain88,
Again, the warm welcome here is wonderful. I can imagine your spring flowers and take similar joy while out walking, especially in the I-don't-know-to-name flowers - love the way you captured that!
Sonialand,
Wishing you peace of mind as you navigate the tough decisions we all face. And also wishing you moments where you can just set it aside and breathe. I thought my case was going to be "easy" but realize now it's more about balance moving forward.
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Hey sisters! I'm back and so is my breast cancer after 15 years. Yep! A "morphologically comparable" 6mm tumor to the 1.6 cm tumor that I had 15 years ago. So here is the short version. Reviewing the tumor from 2010, it turns out that I didn't have pure mucinous BC. Instead, according to MSK, it was pure mucinous BC with micropapillary features. And that Grade 1? It was a Grade 2. Interestingly, I had the 2010 slides also reviewed by a third pathologist who concurred with MSK after they looked at it a SECOND time. Oh, well. And the new tumor? Well, it is no longer classified as pure mucinous with micropapillary features. It is now, IDC with mucinous features.
So, what does this all mean? Well, it could take days for me to bring all of you sisters up to speed. The only thing I can say is that according to the wonderful MSK pathologist, whom I have known since my journey began, has told me that there are too many gaps at this time to say with any certainty whether or not this recurrence is more or less aggressive than the original tumor. Both of us looked up what little literature there was and it appears there is lacking consensus even on how much micropapillary features a tumor must have before it is even classified as pure mucinous with micropapillary features! She and her MSK colleagues have even written a paper on pure mucinous with micropapillary features. Having a recurrence without those features? No data reported. Furthermore, when micropapillary features are present, there is a higher incidence of LVI and positive lymph nodes. In my case, both negative. The only more aggressive feature in the recurrence is that it is now PR negative. But, it also went from 90% ER positive to 100% ER positive. Go figure. Both tumors were described as well circumscribed and glistening. So, on gross examination they are comparable and retain somewhat of the favorable mucinous characteristics.
With all of that said, my two medical oncologists are cautiously optimistic. One said, don't rack your brains out looking for treatment and prognosis because you won't find any data. But, he also said that I still had one of the better cancers. Second medical oncologist said not to worry about the PR negative because the 6mm makes it unlikely to go rogue. Okay. Last time, I did 8 years of endocrine therapy and three years of ovarian suppression because at age 53 I was premenopausal. Also did 6 Zometa infusions. Quit endocrine therapy at 8 years because the BCI index score came back low risk and I wouldn't benefit from further therapy. Discussed the ESR1 mutation. Very unlikely because recurrence occurred 7 years following discontinuing endocrine therapy. First tumor, Oncotype DX score 15. Low risk and chemo would have been more harmful than beneficial.
So, had double mastectomy with implants and now embarking on many more years of endocrine therapy depending on what the future data says and the future holds….
I delayed sharing this news for 6 months while I gathered as much details as I could provide.. I wanted to first get from my pathologists and medical oncologists as much info as possible so I could pass it along to all of you. I wish my team could have given me more solid evidence to help me make as best of an informed decision as possible. Unfortunately, this case, which happens to be my case, is an outlier in the annals of mucinous breast cancer. So, if you have any questions, you might want to ask AI first for some answers. Believe me, AI helped me a great deal, but only up to a point. So be my guest…feel free to find answers to your questions from AI because if you ask ME any questions, I would probably refer you to AI….
Oh… last point…My first tumor was misdiagnosed as a benign cyst for THREE years before a second radiologist pinpointed it and said he was going to biopsy that sucker. He has been on my team for the last 15 years and was a PIT BULL. I am so grateful to him and he has promised me he isn't retiring anytime soon and will continue doing annual sonograms especially since both tumors were deep inside at the 5 o'clock position. Never palpable.
I feel so blessed. Here I am now. My kids grown. Grandkids. I will repeat what I have said from the beginning of my journey, for many of us breast cancer is a treatable disease. When I began my journey HER2 positive treatments were just evolving. Today, with all the treatments available, mortality rates have improved to the point that they are coming close to those with ER positive disease. My wish has always been that we find better treatments and a dare I say a CURE especially for those younger patients who are more often than not diagnosed with more aggressive tumors.
I wish all of our sisters, young and old long lives! And for those who have passed, whose journeys coincided with mine, I continue to think of them and how they have affected my life and I will remain grateful for having known them as well.
Carpe Diem!
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@voraciousreader - We're truly sorry to hear about the recurrence. We're here for you and sending our warmest wishes as you move forward.
Please keep us posted on how you're doing. We're thinking of you!
The Mods
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Hi VR, sincerest wishes we were getting reacquainted with our sister under much more delightful circumstances, but such are these presentations in this rare subtype.. Nobody is alone on this mysterious Mucinous spectrum. We're all behind you as you navigate your present diagnosis. Best wishes.
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VR likely already came across this, but I'm posting to alert everyone to always seek 2nd pathological opinions from dedicated breast pathologists.
"Conclusion - MPMCs are heterogeneous at the genetic level; some tumours show a pattern of somatic genetic alterations similar to those of mucinous carcinomas, whereas others resemble invasive micropapillary carcinomas at the genetic level. These findings suggest that MPMCs may not constitute one histological subtype, but rather a convergent phenotype that can stem from mucinous carcinomas or invasive micropapillary carcinomas."
Best wishes to everyone in treatment and hugs for an enjoyable summer 💚
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obsolete…the study you zeroed in on was written by my dear pathologist friends at MSK and one of them wrote my pathology report.
They are all aware of this recurrence with its most unusual presentation.As I was being diagnosed 15 years ago, Dr. Britta Weigelt, one of mucinous breast cancer’s leading pathologists in the world was asked by MSK to establish a rare breast cancer pathology lab. Here we are, 15 years later and she now leads the Rare Breast Cancer AND Rare GYN Cancer Labs. Speaks volumes how she has grown her lab. She and her colleagues passion for studying rare tumors IMHO is unmatchable. That is how dedicated and brilliant they are….
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Voraciousreader,Thank you so much for sharing so much information about your situation. I'm so sorry you're having to go through something like this again after so much time and so much treatment.
By the way, voraciousreader, you say your PR is negative, but then in your signature you say it's at 100%. My PR is very low in some of my tumors, and I know that's not good at all. Do you know why it's not good? Maybe OBSOLETE knows.
I recently read that hormonal tumors tend to recur after a few years. I was surprised because I thought we had a better prognosis because they're hormonal.OBSOLETE, What do you know about this topic? I really appreciate all the information you're sharing.
I don't go here much because it makes me very sad.I'm extremely tired, and my arm and shoulder haven't returned to normal after having the sentinel nodes removed.
A big hug, good health, and lots of encouragement.1 -
Hi VR & Sonia, I'll respond momentarily after I post 1st half year 2025 study links with new updated Mucinous info. Very much appreciate the research VR's medical team is doing at the rare cancer lab in New York. Please scroll to the end for new better progesterone info.
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Mucinous Carcinoma has a highly diverse morphological spectrum, as one study commented. One example:
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MUTATIONAL ANALYSIS AND PROTEIN EXPRESSION OF PI3K/AKT PATHWAY IN FOUR MUCINOUS CYSTADENOCARCINOMA OF THE BREAST
28 May 20250 -
CYTOLOGY IN MUCINOUS BREAST CARCINOMA: DIAGNOSTIC INSIGHTS AND A RARE BILATERAL CASE
July 20250 -
MUCINOUS CARCINOMA IN A MALE BREAST WITH SKIN ULCER: A CASE REPORT
05 February 2025
(photos)https://www.frontiersin.org/journals/oncology/articles/10.3389/fonc.2025.1521704/full
(link working?)
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MUCINOUS CARCINOMA OF THE BREAST
18 Jun 2025Hypocellular Type A and Hypercellular Type B explained.
https://radiopaedia.org/articles/mucinous-carcinoma-of-the-breast
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Characteristics %
MUCINOUS CARCINOMA OF THE BREAST: EPIDEMIOLOGICAL, CLINICAL AND PROGNOSTIC CHARACTERISTICS; A SINGLE-CENTER EXPERIENCE
July 23 20250 -
EXPLORING THE EFFICACY OF EXTENDED ENDOCRINE THERAPY IN PURE MUCINOUS BREAST CARCINOMA
Extended endocrine therapy did not reduce late recurrence in pure mucinous breast carcinoma (PMBC).
High histologic grade was the only factor significantly correlated to late recurrence.No survival benefit of extended therapy was observed, even in high-risk patients.
https://www.thebreastonline.com/article/S0960-9776(25)00509-0/fulltext
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DEVELOPMENT AND VALIDATION OF NOVEL MACHINE LEARNING-BASED PROGNOSTIC MODELS AND PROPENSITY SCORE MATCHING FOR COMPARISON OF SURGICAL APPROACHES IN MUCINOUS BREAST CANCER
Mucinous BC has "specific clinicopathologic and molecular features."
Comparing "mastectomy and breast-conserving surgery (BCS) "...no significant difference was observed in the risk of breast cancer-related mortality."0 -
INCIDENCE AND SURVIVAL OUTCOMES OF BREAST CANCER SUBTYPES IN THE UNITED STATES
May 28, 2025
Abstract: 2025 ASCO Annual Meeting"Additionally, while mucinous adenocarcinoma has been reported to have better survival outcomes in previous studies, our findings indicate a higher mortality risk compared to infiltrating ductal carcinoma, warranting further exploration."
https://ascopubs.org/doi/10.1200/JCO.2025.43.16_suppl.e13184
https://ascopubs.org/doi/10.1200/JCO.2025.43.16_suppl.e13184
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https://ascopubs.org/doi/10.1200/JCO.2025.43.16_suppl.e13184
(link to article above) site not responding
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INVASIVE DUCTAL BREAST CANCER WITH FOCAL MUCINOUS DIFFERENTIATION IN A 38-YEAR-OLD WOMAN: CASE REPORT AND LITERATURE REVIEW
May 30 20250 -
Hi, please be aware of the following recently published information.
PgR-negativity is a strong predictor of poor outcomes in obese patients, but not in non-obese patients.
BODY MASS INDEX AND PROGESTERONE RECEPTOR IN POSTMENOPAUSAL ER-POSITIVE/HER2-NEGATIVE BREAST CANCER: A NATION-WIDE STUDY IN KOREAN BREAST CANCER SOCIETY AND THE MULTI-INSTITUTIONAL COHORT
2025• PgR-negativity is a strong predictor of poor outcomes in obese patients, but not in non-obese patients.
• A greater proportion of patients with BMI≥25 kg/m2 were PgR-positive, and mean BMI was higher in the PgR-positive group.
• PgR-negativity was associated with worse 6-year oncologic outcomes among patients with BMI≥25 kg/m2.
• In postmenopausal ER+/HER2-breast cancer patients, the prognostic impact of PgR is modified by BMI.
https://www.sciencedirect.com/science/article/pii/S0960977625005326
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ISOFORM-SPECIFIC GENE REGULATION BY PROGESTERONE RECEPTORS DRIVES DIVERGENT PHENOTYPES IN BREAST CANCER CELLS
2025"...An imbalance in the expression ratio of these isoforms, favoring increased levels of PR-A, is common in breast cancer and is associated with resistance to tamoxifen in luminal A-type tumors. Notably, PRs have recently been implicated in promoting endocrine resistance and driving the expansion of cancer stem-like cell (CSC) populations."
"...Despite this insight, the isoform-specific molecular and epigenetic mechanisms underlying PR action in estrogen receptor positive (ER+) breast cancers REMAIN UNDERSTUDIED."
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Hi Sonia, hope your summer in Spain is not too hot & sticky for you, or maybe you enjoy the heat and humidity.
The general consensus in the above linked articles is that Mucinous Carcinoma has a highly diverse morphological spectrum. Thus Mucinous BC is still misunderstood & understudied, but studies have been generally converging these past 12 years. It's a complicated spectrum.
Please be careful not to apply too much weight on conventional IDC studies because Mucinous can differ. If you have further questions that these articles cannot answer, please let us know. Enjoy your weekend.💚
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Sonia, forgot to mention that I also had bad cording and a frozen shoulder and arm following the first surgery. My surgeon had merely dismissed the pain & immobilized arm, but I kept pressing until I obtained a referral for PT physical therapy & massage with a breast specialist PT. It took 10 months (2X/week) of PT to resolve. Don't give up. Best wishes.
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sonia…so there is no confusion….in the body of my post, I explain my primary was 90% ER positive and the recurrence is 100% ER positive. The primary was 50% PR positive. Recurrence, PR negative.
i also had PT for cording following my lumpectomy. I also had a procedure that released my frozen shoulder caused by another, unrelated issue.Moving forward, I will not be addressing anything else regarding mucinous breast cancer. The reason being, is, as I mentioned before, there are so many gaps with respect to understanding its treatment. As Obsolete suggests, Mucinous should be looked at, as, on a spectrum. And then, there is data. Dealing with a rare subtype, often times, the only way to understand treatments is through meta analysis because there are too few diagnoses to establish statistical significance through randomized studies.
i have discussed at length with my team, my concern regarding the PR negativity, the micropapillary features, and the change from pure mucinous to IDC with Mucinous features. Have I read about the potential negative consequences of being PR negative? Of course. That said, most of the data specifically addresses the traditional types of breast cancer. There is, here and there, very small studies regarding PR negativity and Mucinous breast cancers. Most data is not statistically significant. Recently, I zeroed in on Korean study of mucinous breast cancer recurrences. If I remember correctly, I was scratching my head because two of the four were Luminal A. While the other two, were Luminal B. Again, the data is so sparse, it would be difficult to draw any conclusions….
i will repeat what I have said from the beginning of my journey, for many of us, breast cancer is a very treatable disease. Yesterday, I met with my local medical oncologist. She said, “You had a very small tumor. You had surgery to remove it. You will do well, just like before.”Hope springs eternal.
carpe diem.1 -
Voraciousreader, I was surprised to see you back on these boards and very sorry to hear about your recurrence. Your case is indeed puzzling, notably the revisiting of the initial diagnosis and the different presentation of the recurrence. I wish you good recovery and an easy ride on endocrine therapy.
I'd like to thank you for the rich discussions your posts present - the once you made previously, when this thread was in the beginning, as well as the current ones.
And yes, carpe diem sounds about right!
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Obsolete, I hope you've been having a good summer so far. I have been traveling a bit and had a good time and, while happy to be back home, the heat wave and the poor air quality due to wild fires are very trying.
I am amazed every time by your ability to find so much related literature and equally grateful for you sharing it all!
The point you and Voracious made - that mucinous carcinomas should be looked at as on a morphological spectrum - is persuasive in the light of the cases presented.
Hugs and good wishes! ❤️
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Sonialand, I am thinking of you with thoughts and wishes o healing and well being. Take good care and remain positive! I cannot help, but think of what Voracious said, that, while BC is not curable, it is nevertheless treatable...
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Evaluatedwith strain and shear wave ultrasound elastography in addition to mammography and B-mode ultrasound.Hello back to our traveling friend 💜 Rain 💚 healing gals in treatment. Best wishes to everyone this summer.
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