Mucinous Carcinoma of the breast
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Fantastic news, CarGirl. Congrats on your 5-years and wishing you and everyone many more!!!
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Thank-you!
Susan
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My apologies thecargirl. I saw your 5 year anniversary message on the 23rd & keep meaning to reply but i couldn't find my password to login. So sorry about this. Congratulations indeed. I know it meant a lot when I received some lovely replies from my MC sisters to my 10 year anniversary. It is a really encouraging milestone. Improved health is so meaningful after you have had quite a scary time. Blessings on you. May the future look good with all the health efforts you are making. Prayers & blessings Tricianne.
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Thank-you Tricianne, we all are in this together and share so many of the same fears and hopes! Wow,10 years for you, what a blessing. I as well wish you continued happiness and good health.
Susan
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5 years out! Fantastic, Susan!
I am almost 2 years out myself. I stopped taking Tamoxifen 3 months ago due to heavy vaginal bleeding. Fortunately, it seems to be only polyps. I'll have them removed, no sure when, as everything is delayed due to the pandemic. (Even to see a Gyn/Ob took more than 2 months and it was that "fast" only thanks to a cancellation!) Initially, I thought I would switch to an AI but my MO suggested to stay off hormonal treatment altogether, due to low benefit from it, as shown by a couple of breast cancer calulators. (I guess similar to your case). I am actually relived. I had really bad SEs from Tamoxifen (I was on only 10mg because of that, but even half the dose proved to be overtaxing on my endometrium.); so, I wasn't too keen on starting on an AI.
Obsolete, I haven't been able to get the links to work. 😠
Trish, so good to hear from you. Hope things are well down under.
In Canada it will be Thanksgiving in two weeks. Lots to be greatful for!
Stay well!
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Thank-you Rain 88, so nice to hear everyone's well wishes…..we all need that, as we reach some of the milestones. I know it can change, but we need to celebrate something sometimes, after going through things that only we know about! Let's keep it up!
Susan
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susan. Yay! Thanks for the update. Glad all is well. Certainly gives our mucinous sisters a lot of hope.
rain…my maternal family is Canadian. My last trip before Covid griped was to visit family in Toronto and then, and from there, my cousin and I drove to Montreal to see more family. Interesting story…I wear a German shoe, Waldlaufer, and it had been nearly impossible to get the shoes here in the States. And, with nothing to do but take very, long walks, I was wearing out my supply of Waldlaufers. That said, I was delighted to score numerous pairs from Canadian shoe stores! I even crossed the internet pond and found a pair in England. That said, last week, I was able to score another pair from Quebec City for my dear sister! The supply chain has been disrupted everywhere and been challenging to say the least…but my feet have never felt better thanks to Oh Canada!
furthermore…polyps?For a while, I was getting D&Cs for polyps like I was getting routine teeth cleanings! What a mess! Finally, I was told I needed a deep cleaning of my uterus and presto…no more polyps. My polyp issue arrived a few months before my breast cancer, so I really can’t say the endocrine therapy created the problem. However, I am sure it probably made matters worse for some time. But that deep cleaning was magical. You might be wondering what I mean by a deep cleaning….all I know is that it was a very aggressive D&C….0 -
Wow, Voracious, Toronto, Montreal, Quebec City, that's a lot of road to cover! It's a nice feeling when you find something unexpectedly! I always seem to get lots more stuff (I usually look for funky things) when I go shopping in Montreal. Someone once told me that Quebecers are more European in style and taste, hence a more varied selection. (Now you can find pretty much everything on Amazon, even Waldlaufer shoes, but I still prefer the in person shopping.)
On to the polyps... I must have had a preexisting problem. It usually takes a longer time (than my 15 months) on Tamoxifen before any issue would manifest. The Tamoxifen didn't help, that's certain. I was terrified cancer would be found (even the path on the biopsy said cancer suspected), but nothing suspicious was observed. They'll analyze the polyps as well of course, but I am hopeful it will still show only begnin findings. Nowadays, I was told, they don't do D & C (dilate and curettage) anymore. They would go in with visuals and snip the thread that keeps the polyps attached to the endometrium wall (that's how it was explained to me in simple terms). I still dread it, as the biopsy and the water ultrasound were absolutley barbaric! This time I will at least have some freezing (not entirely sure what kind). Not fun, but a much better situation than having my uterus removed!
PS I keep thinking about your former posts (re. research on mucinous?) from awhile back. I guess there have been no new findings...
Take good care.
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Rain...i keep checking for mucinous studies...not much to report....but glad you don't think I am remiss in not reporting...
Now with Pinktober upon the horizon... i will be looking for all the misinformation.
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Voracious, it's the Sloan Kettering research I had in mind (sometimes my syntax and word choice in English are not exactly... native style 😃.)
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Hi ladies, thanks for posting so much info and discussion over the last few years - what a wealth of knowledge right here. I've been reading through since my mucinous diagnosis in June and I've learnt a lot.
I had a lumpectomy followed by mastectomy due to positive margins, and I'm now making a choice about chemo before starting hormone therapy. I understand that mucinous doesn't often respond well to chemo (DC is being offered) but my oncotype score is 20 which puts me in a grey area. I'm 36, pathology shows Er+/PR+/HER2- 14mm pure mucinous carcinoma and 1 additional 4mm nodule (that grew in the skin as a result of cells spread by the biopsy, apparently very unusual but there we go!). Node negative but evidence of lymphovascular invasion. My MO seems to be wavering between 1. dismissing chemo as we're dealing with mucinous, and 2. recommending chemo due to my age and the unexpected growth of a second nodule in the skin. I don't think she's dealt with mucinous before so I'm doing my own research.
With oncotype RS of 20, recurrence shows as 6% over 9 years with Tamoxifen alone, chemo may change that by 1 or 2%. But no guarantees due to the mucinous type perhaps not responding to chemo anyway.
What would you ladies do with those odds? I understand some of you were told to disregard your oncotype as it doesn't apply to mucinous, but not everyone it seems.
Congrats to those of you with recent 5 and 10y cancerversaries! Amazing!
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Hi Sarah, mucinous is considered an "old ladies" type of cancer so I am so surprised to hear you're so young! I don't know what to say, other than I am so puzzled by the lymphovascular invasion with pure mucinous (and by the seeding from biopsy!). I was 48 at dx and I didn't have an Oncotype done because of it being pure mucinous, as you said. I really don't know what I would do if I were in your place, but I know that mucinous doesn't respond to chemo. Hopefully someone else will come along with more information.
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Hi Rain, yes it's strange isn't it. I feel like it's not acting how anyone expects mucinous to act so I'm nervous to forgo chemo just based on the "mucinous" diagnosis - I want to throw everything we can at it.
But also don't want to experience negative side effects for no benefits!
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Such a hard decision!0
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i would suggest that your case be presented to a tumor board. Furthermore, I think you might want a second opinion at a teaching hospital
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Hi Sarah, sorry to learn your MC cells appear to have been a little active. If your ER % & PR % are unfavorable (low %) and if your molecular phenotype is (Luminal B vs Luminal A) sometimes molecular drivers can act up. If it's Luminal B with a high grade & high mitosis, it's likely considered more aggressive than the average MC case. Your nurse navigator or pathologist can help. Wishing you luck.
Molecular Heterogeneity of Luminal Beast Cancer
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sarah….when a case is presented to a tumor board, a pathologist is usually present. The other specialists who are present, can then challenge the pathologist’s report and look for clues, like obsolete mentioned, that will help formulate a treatment plan.
remember, when dealing with mucinous BC, whether pure or mixed, there is no one size fits all treatment plan. Since mucinous bc is rare, neither you nor the oncologist should be expected to know what is the best plan. That’s why a tumor board or an oncologist at a major teaching hospital would probably be beneficial.0 -
Omission of Chemotherapy for the Treatment of Mucinous Breast Cancer: A Nationwide Study from the Korean Breast Cancer Society
"The Kaplan-Meier curves of BCSS and OS based on pathologic tumor and nodal stages and age revealed that chemotherapy did not statistically significantly improve prognosis, except for the N3 stage."
https://pubmed.ncbi.nlm.nih.gov/31897333/
Evaluation of efficacy of chemotherapy for mucinous carcinoma: a surveillance, epidemiology, and end results cohort study
https://journals.sagepub.com/doi/full/10.1177/1758835920975603
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Invasive mucinous carcinoma of the breast and response patterns after neoadjuvant chemotherapy (NAC)
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Thanks so much everyone, for the advice and the links. The pathology has been sent to be reviewed elsewhere and the oncologist is conferencing with her "team" at the hospital which I think must be the equivalent of a tumour board - sounds like a variety of specialists are part of the team. I have the option of a second opinion through my insurance but as it's already 12 weeks since my first surgery the oncologist stressed that if we are to do chemo it needs to start immediately, and the second opinion is estimated to take 6-8 weeks.
I'm frustrated that I had to wait this long to see an oncologist, only to hear that there no time left to really consider options or ask for more opinions. But there we go. All covid delays and staffing issues.
Thanks for all your support!!
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Sarah, VR gave you the best advice, time permitting. But if I sat in your shoes today, I'd consider chemo during the interim. (You can always elect to quit chemo early if SE get bad.). Your tumors behavior is not typical of either pure MC nor mixed MC ER+ PR+ HER2- with malignancy spread in "skin" and LVI. How were you staged because skin malignancy could possibly be classified 3N or stage 3b??
I had multi-focal Mixed MC with level 3 mitosis & grades 2-3 almost 7-8 years ago, but no LVI & no skin invasion. Chemo wasn't offered because of low oncotype.
It's normal to feel frustrated & heavy with big decisions before you, but you'll remain in all our thoughts & prayers as you navigate your difficult treatment decisions.
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Hi obsolete, thanks so much. I am considering chemo, but also now considering jumping straight to ovarian suppression which the team seem to think could be the main benefit of chemo in my case anyway.
I'm actually still classified as t1c, stage 1, as the skin nodule was "seeded" by the biopsy needle. They're not considering it an invasion of the skin by the tumour itself, or we'd have to jump up to stage 3. The MO said on paper it would have to be classified as t4, stage 3, but it would be an academic classification only as they don't consider it a true advancement of the cancer into the skin. They want to do radiotherapy on the mastectomy site to be safe however. I understand that. I'm not so sure about her decision to disregard the LVI, she said (in Canada) that didn't affect any treatment decisions as my nodes were clear, but that wasn't how I understood it from my research.
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Hi obsolete, thanks so much. I am considering chemo, and also note thinking of jumping straight to ovarian suppression instead, as they suggest that may be the main benefit of chemo in my case anyway.
I'm actually classified as t1c, stage 1, as the skin nodule was technically "seeded" by the biopsy needle. They don't consider it a true invasion of the cancer into the skin. Or yes my staging would be very different. I understand their thinking here - I'm not so sure about the MO's decision to disregard the LVI however. She said (in Canada) LVI does not affect treatment decisions if the nodes are clear, but that wasn't how I understood things in my reading.
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Hello Sarahvancouverisland! I'm in Kamloops and had a diagnosis of mucinous with her2+ almost 10 years ago. Certainly recommendations for treatments have been changing since then, but at the time, based on my research, my oncologist agreed to have pathology re-examined and he contacted the top breast cancer doctor in Canada for opinion. In the end, that oncologist changed recommended protocols and, although I did have chemo, I had a less severe chemo protocol. I am sorry to say that I simply cannot remember the name of the top specialist at the time, ( a woman) but I'm here to say it is fair for you to ask for opinion of the top breast cancer oncologist, given the unusual diagnosis. Also, If I could have convinced oncologists to consider ovarian suppression at the time, I would definitely jumped on board with that. It wasn't something they recommended at the time, though naturopaths were encouraging it.
I know how hard this all can be - wishing you strength with some good laughs along the way. My other strong recommendation is to reach out to Inspirehealth Integrative Cancer Care. It is funded by BCmed, and the doctor there was able to prescribe supplements throughout my treatments that would ease side effects without adversely affecting the work of chemo and hormonal treatments. Inspirehealth is amazing and is being used as a model internationally. The website does not represent all they can do to help. You can just call, ask for an appointment with the doctor (even back then it was done by phone), they will have you fill out an intake form and do blood tests, then you will meet with the doctor and for me, they became a trusted and helpful support from then on. I have no doubt I came through chemo reasonably unscathed because of their support. Good wishes.0 -
Hi Feelingthemagic! Thanks so much for your post, and sorry for the long delay in replying. So good to hear from someone very local! I've contacted Inspirehealth and they seem great so far - thank you for that recommendation.
Wanted to give everyone a little update as you were all so helpful. My initial pathology report was reviewed since I last posted and the more senior pathologist found more extensive LVI than previously reported, and also a positive node (where previously they were all reported negative). We now have to disregard the oncotype score as it's designed for node-negative. I have no idea how the reports can be so different from one pathologist to another, but there we go. He upstaged the cancer from stage 1 to stage 3 based on these findings, citing high grade & high mitosis and the additional skin nodule (even if they can see it was seeded by the biopsy needle). The tumour board agreed the treatment plan should be more aggressive despite the mucinous nature of the tumour (as it's not acting typically) so I started chemo on Friday. Dose dense 8 rounds AC/Taxol, followed by radiotherapy and hormone therapy.
I won't lie, it was a lot to take in, and going from stage 1 to stage 3 overnight was difficult to hear. But after a rough weekend post-treatment I think I've started to turn the corner today. I hope you ladies are all keeping healthy out there and thanks again for the support
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Hi Sarah, wishing you well as you take on your upgraded treatment plan. With these rarer subtypes & unique presentations, it's often a diagnostic challenge. Adding mechanical cellular displacement into the mix, it can get very complicated and controversial, not always trivial.
Tumour cell displacement after 14G breast biopsy
https://pubmed.ncbi.nlm.nih.gov/15135480/
Displaced Epithelium in Breast Pathology: A Review
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Hi Sarah, I am so sorry about all this, it's mind boggling! I wish you well with your treatment.
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https://pubmed.ncbi.nlm.nih.gov/34484519/
Mucinous carcinoma in an octogenarian: Treatment and management of breast cancer in the elderly
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https://pubmed.ncbi.nlm.nih.gov/34815818/
Mucinous carcinoma in a male patient: Diagnosis and management of breast cancer in male patients
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https://pubmed.ncbi.nlm.nih.gov/34173285/
Outcomes of patients with invasive mucinous and tubular carcinomas of the breast
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