Mucinous Carcinoma of the breast
Comments
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bubbles. Congrats on doing well. While there are other threads here that discuss young women and successful pregnancy following a breast cancer diagnosis, I am sorry to say that none mention mucinous. I often read the literature, but again, there isn't anything to my knowledge that discusses mucinous and pregnancy.
That said, from the bottom of my heart, I do wish you well. Keep us posted. Perhaps your insights will help future young women diagnosed with mucinous.
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historygeek - I hope you found the path you're comfortable with after meeting with the surgeon. You have a very similar diagnosis - I was also diagnosed with invasive mucinous carcinoma last July, also grade 2. I had hoped for a lumpectomy but due to the small size of my breast and the position of the tumor, the recommendation was to have a mastectomy. I opted for no reconstruction; this is really a personal choice, but definitely read up on this before deciding. When the surgeon performs the mastectomy, they usually remove a few lymph nodes. I had 2 removed and both were clear. Because of this, I did not have to go through radiation (usually this is needed with a lumpectomy) or chemotherapy (I also had an Oncotype test and it came back with low risk). I immediately went on Tamoxifen because I am still premenopausal. I had terrible side effects from the Tamoxifen and currently only taking 5mg a day. It's been exactly 8 months to the day today since my surgery and I am doing very well. I hope this site provides you the support you need.
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Hello! I was recently diagnosed with Triple positive Mucinous Carcinoma in my left breast and I have an appointment set up in about 11 days. They did a fine needle biopsy and IHC to diagnose me. I've been reading that 3x positive mucinous cancer is pretty rare because most Mucinous cancer of the breast is HER2-. I am seeking people who were in a similar position. I'd like to hear about your experiences and what treatment was like for you. Thank you so much.
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Geltosun, I'm sorry you find yourself here. I found a lot of knowledge here after my diagnosis. One thing my surgeon said is that mucinous will be treated in most cases just like any IDC.
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gelatosun...
Feelingthemagic was also diagnosed as triple positive Mucinous. It has been a number of years and she is doing well.
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Hi gelatosun. I am sorry to hear about your dx. Learning you have breast cancer is never easy and the days leading up to tx are particularly trying. Triple positive Mucinous breast cancer is an even more rare subtype of the already rare Mucinous breast cancer type. I hope you will hear from someone else with a similar dx. Meanwhile, you might want to check out the Triple positive thread on the forum. The one question I would make sure I ask my medical team is to find out what is the most agressive characteristic of my cancer, as this is what will most likely drive the tx. We are here to support you if you have any questions or if you want to update. Good luck going forward! Sending your way lots of positive vibes!
Voraciousreader, feelingthemagic posts have been deleted. I'm not sure if she checks back here anymore.
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rain...feelingthemagic posts pop up every now and then...I can understand why she and others want to delete their online footprint especially when it comes to this very personal situation that we share. Both online and in my personal life, I have been extremely careful about who I have shared this deeply personal experience.
That said, this thread was there for me when I needed it most and I am so glad that you and others continue keeping it going. Thank you!!!!!
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Hi voraciousreader. For many of us this thread has ben a godsent! For me, personally, the only way I could find solace for a while was to read through the many posts, often more than once. It was the combination of support, camaradery and knowledge, the feeling that I wasn't alone that I would often seek and was able to find in the messages exchanged on this thread. So for that I thank you and all the others who have come back and offered support and knowledge! I also think that many of us closed this chapter of their lives and moved on. I am trully thrilled for them and I sincerely hope they all are doing well thriving. I thought that was the case for feelingthemagic and wanted to let you know. All my best wishes to you and lots of positive vibes sent your way!
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Hello Gelatosun,
My apologies for not seeing the notifications until now. Sorry you are needing to be here, but this was my best place for support and info during my treatments. Good you found it. I was also diagnosed with triple positive mucinous cancer - ten years ago. I am doing very well. I think my treatment info will pop up in my signature. I did do chemo, herceptin, and 5 years of hormonal therapies. I suppose my key thing to mention up front is that the original recommendation for the chemo protocol was extreme. I asked for the top specialist in Canada to review because of the rarity of the diagnosis. She came back with a less extreme chemo protocol and I am relieved I pushed for her involvement. I will try to get my notifications to show up in the right place in my emails and am happy to answer any questions. Good wishes with a hug.0 -
feeling! Glad to hear from you and congrats on the 10 year mark!
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Why thank you! Oh, but wait, let me recalculate. It's actually 9 years. And that's awesome, too! Lovely to see you, too, Voracious. Ever grateful how much support you've provided for all of us.
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Congrats to all cancerversary celebrators and wishing you all more! 7+ here...
Wekcome HER2+ newbie. Please be aware.
Her-2 positive mucinous carcinoma breast cancer, case report
Irean Garcia Hernandez et al. Int J Surg Case Rep. 2018.
https://pubmed.ncbi.nlm.nih.gov/29291541/
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Wow, obsolete, congratulations! And also thanks for the links!
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Rain, wishing you lots of sunshine, spring flowers & safe times up there!
Mucinous carcinoma with micropapillary features is morphologically, clinically and genetically distinct from pure mucinous carcinoma of breast
Peng Sun et al. Mod Pathol. 2020 Oct.
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Hi Gelatosun,
I was diagnosed with triple + mucinous carcinoma in April. I really wasn't expecting the Her2 positive result that came back after surgery. I have got a lot of different opinions about the treatment I should follow and I'm only just beginning to feel like my head isn't spinning.
Basically I have learnt that there is no clear path and there probably isn't one right way to deal with this. There just arent enough cases of this subtype in any of the studies.
I'm sorry you are in this situation. It's hard enough to get the diagnosis without having to deal with being 'rare'. I too have been looking for more people with a similar diagnosis because this is so hard especially at the beginning.
I think my diagnosis and treatment will come up below(?), I'm new here, otherwise happy to share with you.. please know you are not alone, and there are others who understand and share your situation.
Please let me know how you are getting on.
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Hello Donaji and Gelatosun,
Rare enough to have mucinous without adding HER2+, isn't it? I responded earlier to Gelatosun, and hope you saw that, Donaji. I'm nine years past the triple positive diagnosis and doing very well. Treatments in my signature. The key thing is to ask for top specialists to review your case and treatment plan. When I received my diagnosis, the oncologist automatically scheduled a full blown chemo plan. I said, 'but wait, Mucinous with Her2+ does not exist." In the NCCN.org site, at the time, it was noted that if HER2+ showed up in pathology to retest as it did not exist. Onc did have pathology redone elsewhere, but alas, the first diagnosis was correct. He was happy to consult with top Canadian breast cancer specialist and they adjusted chemo plan as best as she knew. Wishing you both the best care and speedy healing. That goes for everyone here, too!!0 -
Hi FeelingtheMagic
It's good to hear from you and hear you are doing well . I have been struggling with my treatment plan. It has been so much harder than I imagined. Lots of conflicting opinions on everything, except Chemo, which has been a definite no.
I was diagnosed and had surgery in one country and then left to be back with with husband in another. (Family/covid/it's complicated).
I was retested so I'm sure of diagnosis. But since I posted the advice has come back to consider re excision or mastectomy. (Some close and one involved margin for DCIS.)
Totally confused as I was told initially in both countries that RT would be enough.
Travelling tonight to see the team in Mexico City tomorrow. Decisions will need to be made. Just not sure I'm up to it.
Fingers crossed that it will get easier. That's for your kind words!
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Hi all - just wanted everyone's opinion on this. Just about a year ago, I found a lump in my left breast. Prior 2 mammograms missed it because of my dense breasts. I had a left mastectomy. I just passed 1 year with my initial DX, and just went in a couple weeks ago for a diagnostic mammogram on my right breast. The radiologist basically said because my breast was so dense she couldn't see anything. So I'm wondering if I should try to move up my MRI which is currently scheduled for December just to be safe. I check my right breast probably twice a month just because I'm so paranoid after all of this. I haven't felt anything, but I'm just worried.
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pinger…are you getting sonograms? Mammograms sometimes miss mucinous cancers or they might be mistaken for cysts. Where are you getting your imaging done? Is it at a women’s imaging center? That said, I am pretty shocked that the radiologist said they couldn’t see anything and didn’t offer a different type of imaging. Did you receive a report? If so, did it have a BIRAD score? That is important because based on what the imaging is seeing will determine when you need to be seen again. Do you need an MRI sooner? You need to ask the radiologist that question and get an answer that leaves you without any doubts. Good luck and keep us posted
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Pinger, honestly, I don't think you'll have peace of mind until you get the MRI out of the way. If you can wait until December, I am sure it will be ok, especially because you didn't notice anything unusual in your right breast. However, if I were you and I had the option, I would try to reschedule for a closer date. Waiting for tests and results is one of the hardest things for me and I'm thinking it might be hard for you as well. So if it's safe to have an MRI sooner, I don't see why wait 5 months... Gentle hugs and best of luck!
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I have just celebrated 10 years since surgery date with triple positive mucinous breast cancer. I still visit here every day and have learned so much over the years. I had a question which I am sure has been addressed but I recently read something that I am interested in learning more about. Since I was triple positive, I received Herceptin as part of my treatment. The type is so very rare but I read a case report (NCBI I believe) which reported the addition of Herceptin was not effective due to what they suspect is crosstalk or that the mucin creates a barrier. This was reported in two cases back in 2017. Do any of you know anything about this? Has anything new been reported? Thanks and look forward to hearing if anyone has any knowledge of this.
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Lime, I have nothing to offer, but I wanted to offer congratulations on your 10 years out! 🤗🎉
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Thank you voraciousreader and rain for your responses. I went back to look at my mammogram report and it says BIRAD-1 negative. And then it went on to say that because my breast was dense it could hide small lesions. The recommendation is an MRI in six months so that I could be screened at regular intervals which fits the Dec appointment. It doesn't make me feel any better because the 2 mammograms prior to me finding the 2.1cm lump in my left breast were also BIRAD-1 Negative, one mammogram was done 5 months before I found the lump.
I go to a women's health center that is located at my local hospital. I believe if they do not see anything in the diagnostic mammogram, they do not move forward with an ultrasound.
I did go back and looked at my MRI report when my tumor was first discovered and they didn't see anything in my right breast. So that does give me some reassurance.
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pinger… I, also, space out my imaging. In December I had a mammogram and ultrasound. In June I had an MRI. That said, my mammograms never saw my mucinous tumor. And, it was mistaken for a cyst for 3 years! My gyno felt it and sent me for diagnostic imaging AND a biopsy. My breasts were also dense and filled with cysts. Based on my history, I still see the same radiologist who diagnosed me and he makes sure I have ultrasounds once a year. I would ask to speak with the radiologist whose name is on the report. Together, you should come up with a plan. The fact that you have very dense breasts, and have had a cancer diagnosis, is a red flag that demands additional attention. My BIRAD scores were always a 3 …until I went for the diagnostic imaging which came back a 4c and a biopsy confirmed the diagnosis. I hear you. I always say that imaging failed me. I never get a good feeling when I leave the imaging center despite the radiologist having my back. Back tracking,,.,the radiologist who diagnosed me was not the radiologist that missed my cancer….i love my radiologist. I told him he will grow bald and I will grow grey together. Almost a dozen years out….he is bald and I am salt and pepper!
lime…i don’t recall….however, I am THRILLED you are doing well0 -
lime…this is from 2018
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this is from 2019
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MICROSCOPIC (HISTOLOGIC) Description
- Clusters / nests of tumor cells with low or intermediate nuclear grade floating in pools of extracellular mucin
- Mucin pools separated by fibrous septa with capillaries
- Considered PURE when mucinous component comprises > 90% of the tumor, which is associated with favorable prognosis
- Otherwise, tumor is MIXED (mucinous component comprises 50 - 90% of tumor) or has MUCINOUS FEATURES (mucinous component comprises < 50% of tumor)...
- Capella TYPE A: abundant extracellular mucin production with scattered small epithelial clusters, strips or cribriform structures floating in pools of mucin
- Capella TYPE B: large sheets of tumor cells with mucin production and neuroendocrine features
- MICROPAPILLARY pattern
- Clusters of tumor cells with intermediate to high grade nuclei, occasional hobnailing and reverse polarity; more likely to be HER2 positive...
- PIK3CA and TP53 mutations more frequent with recurrent gains of 8q ..
- https://www.pathologyoutlines.com/topic/breastmalignantmucinous.html
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Excellent articles, Obsolete, thank you for the link. I hope you are doing well. It's been an unusual summer, with such swift weather changes, but it it's been great nevertheless, given that - finally - there are no more COVID related restrictions and we are almost back to normal. Sending you sunshine thoughts and positive vibes.
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Thanks much, Rain. Hopefully you weren't trapped under that summer heat dome or extreme rain. Wishing 😇 all a healthy & fabulous summer.
"Up to 20% of lesions can be OCCULT ON MAMMOGRAPHY."
"PET/CT may help to differentiate pure from mixed mucinous carcinoma and to evaluate the aggressiveness of the tumor."
"A pure mucinous subtype carries a relatively good prognosis compared to other adenocarcinomas: 5-year survival 95% (stage 2), 75% (stage 3), 35% (stage 4). Overall the tendency to metastasize is less than for other types..."
https://radiopaedia.org/articles/mucinous-carcinoma-of-the-breast
"HISTOPATHOLOGICAL ANALYSIS OF MUCINOUS BREAST CANCER SUBTYPES AND COMPARISON WITH INVASIVE CARCINOMA OF NO SPECIAL TYPE"
March 2021
https://www.nature.com/articles/s41598-021-85309-z
"MUCINOUS BREAST CARCINOMA WITH TALL COLUMNAR CELLS"
"The World Health Organization classification divides this type of tumour into three different subtypes: mucinous carcinoma, mucinous carcinoma with tall columnar cells (mucinous cystadenocarcinoma and columnar cell mucinous carcinoma) and signet ring cell carcinoma "
https://publishing.rcseng.ac.uk/doi/full/10.13080 -
Hello fellow Mucinous Breast Cancer sisters!
Today I reached my five year mark, I am very happy and thank God that so far, I am all good. I think less and less of having had breast cancer but it never completely goes away, it changes us. I wanted to share my story incase it would be helpful to others.
DX 9/23/16, 7mm Pure Mucinous , Stage 1, Grade 1, ER/PR 95% strong, HER-2 NEG, Nodes neg, K67 30%, Onco 32% (with inhibitor, 10yr recurrence 22%)
Lt. Lumpectomy , Radiation, Arimidex 2 years
My doctor felt Mucinous is different so was not that concerned over my Onco score, she also felt the Mitotic Rate of 1 was more reliable vs the K67%
I did have her run the RSCP (recurrence 6%) and the RSClin (recurrence 7%), just for interest, I know those numbers are based on 5 years of Arimidex.
The 3 Magee Equations average score was 13.22 compared to an Onco score of 32! I could only take two years of Arimidex, my quality of life was really suffering, my doctor did not have a problem of me going off of it. I walk almost every day 3 miles, keep my weight down and my stress level . I have yearly bilateral mammograms and ultrasounds along with bilateral ultrasounds every six months, mixed with breast exams. I hope my story has been helpful, we are all in this together.
Susan
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