Dec 16, 2016 02:36PM voraciousreader wrote:
Thank you for sharing such great news!
Posted on: Apr 23, 2009 04:43PM
On April 21st I had a core biopsy and today I was told that I have mucinous carcinoma of the breast. When I investigated on this website, the information given was that this is a rare type of cancer, about 2-3% of all breast cancers and usually occurs in post-menopausal women over the age of 60. I am neither. I am 51 years old, but still menstruate. I have an appointment with a surgeon, but feel as though I am in the state of shock. This "nodule" was found on routine mammogram and I convinced myself that it was nothing.
This may sound odd at my age, but I just recently started to enjoy and like 'these babies'. The thought of losing my breast scares me tremendously, and I have not even considered the thought of this cancer metastasizing. I won't think of that!Log in to post a reply
Posts 1801 - 1830 (1,844 total)
Dec 16, 2016 02:36PM voraciousreader wrote:
Thank you for sharing such great news!
Feb 15, 2017 11:46PM miraloma wrote:
I am recently diagnosed at age 45 and I've been reading this thread. Thank you all for the wealth of information and encouragement.
I'm still not sure exactly what I have. The initial biopsy pathology report says mucinous carcinoma. The follow up lumpectomy path report downgrades (or upgrades depending on perspective) to invasive mammary carcinoma with mucinous features. My 2nd opinion on the lump slides says IDC with mucinous and micropapillary features. It also says the positive node has predominant micropapillary features. It's clear to me that the cancer is definitely mixed. What I don't know is the % of mucinous vs micropapillary. My OncoType results are not back yet.
I have some questions and hope for some feedback.
1. Should I ask for a 3rd opinion on the pathology or proceed with the treatment plan for the most aggressive component which is the micropapillary?
2. The lump path doesn't retest ER/PR/HER2. It merely references the # from the biopsy path. Is it necessary to request a retest based on the lumpectomy? If so, should I ask them to retest the tumor (more mucinous) or the node (more micropapillary), or both?
3. The tissues/slides sent for the OncoType only contain the tumors, not the node. Again, with the node have the more aggressive subtype, should I ask for an OncoType on the node itself?
My concern is being under diagnosed. Since the biopsy path labels it mucinous carcinoma, I've been hanging on to the good prognosis of a pure MC. I worry about making decisions on chemo/rad/hormone based on incomplete info or being too optimistic.
I have a real hard time finding information on BC with both mucinous and micropapillary features. Both subtypes are rare in its pure form. One has really great prognosis while the other has an unreasonably high mortality rate. It's really difficult to reconcile them in my head.
Feb 16, 2017 03:46AM Moderators wrote:
Welcome Miraloma to the Community Forums,
We're glad that you found us!
Others should be along soon to offer their words of wisdom and experiences.
In the meantime, feel free to contact us anytime with any questions you may have, we're always here!
Feb 16, 2017 06:39AM - edited Feb 16, 2017 06:39AM by voraciousreader
Above is a most recent link to micropapillary bc.
Regarding additional pathology testing...I wholeheartedly agree that you should get another pathology opinion. You might wish to contact the rare breast cancer lab at Sloan Kettering.
That said, the standard of care requires that you treat the most aggressive component of the tumor. So, once the pathology is conclusively evaluated, your treatment plan will be confirmed.
Keep us posted! We are here for you!
Feb 16, 2017 11:30AM miraloma wrote:
WeAreConnected and VoraciousReader, thank you for your feedback.
My 2nd opinion pathology comes from an NCI designated center. There's another NCI center near me, which where I am considering sending my slides for a 3rd opinion. What's stopping me though is timing. My surgeon's putting my case in front of the tumor board next week. I can't send my slides out till that's done. By then, I'll be 7 weeks out from surgery. Having a 3rd/4th opinion may give me more info, but it will also delay the start of my treatment. If I were pure mucinous, I'd feel ok to wait. This micropapillary business really scares me.
Feb 16, 2017 12:53PM voraciousreader wrote:
sounds like your team is on the ball. Glad the tumor board will be issuing an opinion. There will probably be another pathologist at the meeting...
Focus on doing well! I think the link that I posted above should be very reassuring!
Feb 17, 2017 05:11PM miraloma wrote:
Big sigh of relief! My OncoType score is 12 and the oncologist does not recommend chemo. On to radiation I go! Can one really be excited about getting radiation?!
Thank you all for your encouragement and support. I could not have gone through the last few months without y'all. Stay strong, sisters!
Feb 17, 2017 10:01PM tricianneAust wrote:
First welcome to us MC sisters I am so glad that those like Voracious reader can answer your complicated questions. Yes you can be excited about getting radiation if as the research indicates that it deals with you not getting a recurrence of the breast cancer. I made my treatment as exciting as possible. I booked in the earliest appointments in the day that I could get into so it was over & done with before it ate up a chunk of my day, also you get less system or patient holdups then. Of course early appts are not always possible. I drank heaps of water daily used all of the creams they gave me & got no radiation burn even with my English sensitive skin. I treated myself to a special coffee each day after the session, so reward yourself somehow each day. A friend of mine bought a pile of scatchie tickets (the win a prize type) for the radiation treatment series and used one each day for her reward & won a prize! My oncologist was quite strict about me walking after the session for an hour each day, in the fresh air, for my body to recover from the "radiation blast". I managed the radiation really well and if I had to do it again tomorrow I would happily participate.I am really fit & well 6yrs 4mths after diagnosis. Lots of prayers & blessings
Mar 7, 2017 10:55PM miraloma wrote:
Just when I thought I was out, they pull me back in!
I got a low score on the OncoType but apparently I'm still not ready for radiation...
I had 2 small tumors (13 mm, 10mm) in close proximity to each other. During my lumpectomy, 1 enlarged lymph node (18 mm) was removed, which turned out to be positive. My dr ordered the OncoType on the large tumor (with mucinous features), which came back low risk. Subsequently, the 2nd opinion pathology report said the small tumor was more aggressive (with micropapillary features.) The lymph node, which was bigger than the tumors had solid mass, was predominantly micropapillary, i.e. much more aggressive than the tumors themselves. The tumors and the node were ER+, PR+ and HER2-. Ki-67 was 15% on both tumors, but >30% on the node, consistent with aggressiveness.
A tumor board suggested OncoType on the lymph node but Genomic Health said OncoType was not validated for node tissues. As a compromise, my dr ordered a OncoType on the more aggressive tumor. I'm waiting for the result.
Given that the mass in the node is much more aggressive, I'd like to know:
1. Is there a genomic test that is validated for node tissues?
2. Are there any other tests, markers or indicators to perform on the node to evaluate the need for chemo?
3. Does it make sense to start hormone therapy while I wait for test results? I'm 45 years old and had the lumpectomy over 2 months ago. I'm concerned about the delay of treatment.
Thank you in advance for any feedback and suggestions.
Mar 12, 2017 06:25AM utjoy wrote:
What a terrible place to need...yet, so wonderful to find it. I've spent the last week plus reading & learning a lingo I never wanted to learn. Just as you all before me.
I was recently diagnosed with " intraductal & invasive Papillary Carcinoma with FOCI of invasive mucinous carcinoma". Lymphovascular invasion is present. ER/PR + HER2 neg (1+). Grade 2. Biopsy: 8.5 cm, margins not clear.
I, like many others on here, had fibrostic tumors and very dense breasts which made mammograms kind of useless. I injured my left breast in May of 15' by running into a sharp object...when I noticed slight bleeding from the nipple I didn't worry too much about it...however, I did go to my PC Dr. and he recommended an ultra sound...I finally did it because it never healed...it didn't bleed all the time, it seemed to come and go, including the lump that I assumed was just another fibrostic tumor. Anyhow, here I am!
Feeling very optimistic and ready to beat this! Dr. told me it's considered Stage IIIA because of the size and lymph node (1) involvement.
I start AC April 6th.
Mar 13, 2017 07:23AM utjoy wrote:
WeAreConnected...thank you so much for the warm welcome.
That is a very strange 'coincidence'! It is not 'pure' mucinous as far as I can tell...I'm still learning this.
I start AC chemo on April 6th (port & node aspiration on 4th), 4 treatments then 4 of Taxel...then mastectomy and rads.
I had a PET scan last week and it is contained to the breast...what a long, scary process.
Mar 14, 2017 08:57AM utjoy wrote:
Thank you so much for all the amazing information, WeAreConnected!
My biggest problem is where I live...in the Four Corners Region, Utah...I'm driving to Durango Co which is 145 miles away, otherwise, there's a center in Farmington NM (140 miles), Grand Junction (240) and Salt Lake (360)...the oncologist I'm seeing is a temp out of Portland so he'll be gone this week & I'll have a one who is also new to the center.
I feel ok with what they're planning...but, I admittedly don't know very much about any of it. The surgeon who did the biopsy is a survivor of bone cancer and I feel that I'm in pretty good hands where he sent me...I don't know. He won't be part of the future surgeries because he's from a different hospital and I want to just pick one place to go! He told me there are 3 different cancers...hence, the chemo?
Mar 15, 2017 06:18PM CareGiverHusband wrote:
I am cross posting this over from the general CHEMOTHERAPY thread and hope there is no issue with forum regulations/rules. I plan to read all 61 pages in the meantime. Thanks in advance and thanks in general for everyone's contributions to this forum.
Would appreciate feedback on when tumor shrinkage became evident during chemotherapy? Immediately, halfway, towards the end or NO SHRINKAGE? Specifics would help in regards to type of chemo and tumor size.
My wife started A/C + Taxol chemo in December. Doctor skipped the 4th and final A/C after no evidence in shrinkage via mammogram and ultrasound. She moved on to Taxol and has just completed the 5th infusion of 12. At 3rd infusion, doctor believed there was slight shrinkage by touch. Now after 5th, doctor believes tumor hasn't shrunk more.
As you can imagine, the thought of chemo NOT being effective and melting the tumor is incredibly distressing and her spirits are incredibly low.
Does chemo flat out NOT work in some cases?
Quick info: tumor 5cm, spread to lymph nodes, her2 -, estrogen +, progesterone -, grade 2, Invasive mammary carcinoma with mucinous.
Mar 16, 2017 11:04AM voraciousreader wrote:
Breast. 2012 Jun;21(3):289-95. doi: 10.1016/j.breast.2011.12.011. Epub 2012 Jan 25.
Although effective regimens have been established for invasive ductal carcinoma-not otherwise specified (IDC), the efficacy and prognosis of other minor types of breast cancer are unknown because of their rareness. The clinicopathological features and prognosis of other minor types concerning the response to neoadjuvant chemotherapy (NAC) were evaluated in this study. A total of 562 patients were classified according to the Japanese and the World Health Organization (WHO) classifications, and the number of IDC and other special types (SP) was 500 and 62. The SP patients had a significantly poorer clinicopathological response to NAC and less breast-conservative therapy than those with IDC. According to the WHO classification, mucinouscarcinoma, metaplastic carcinomas and apocrine carcinoma also responded poorly, and patients with metaplastic carcinomas and invasive lobular carcinoma had a significantly poorer prognosis. Despite the poor response to chemotherapy, patients with mucinous carcinoma and apocrine carcinoma had a good prognosis. The response to NAC and the prognosis vary for each histological type. For some types, the prognosis was not related to the clinicopathological response to NAC.
In the treatment of breast cancer, neoadjuvant chemotherapy (NAC) has become the standard treatment modality for downstaging purposes. Although effective regimens have been established for the treatment of invasive ductal carcinoma-not otherwise specified (IDC), the data about the efficacy and prognosis for patients with other minor types of breast cancer are insufficient because of the rareness of these tumors. Defining the relationship between each histological type and the clinicopathological response to NAC is essential to optimizing individualized treatment.
We retrospectively evaluated the clinicopathological features and classification of the histological types based on the Japanese and the World Health Organization (WHO) classifications before and after NAC in 562 patients with primary breast cancer who underwent curative treatment after NAC between 1998 and 2008. The prognosis was estimated for each histological type.
Of the 562 patients, the number of cases of IDC and other special types (SP) was 500 and 62. In the SP group, the clinicopathological response to NAC was significantly poorer, and the patients underwent breast-conservative therapy less frequently than did the IDC patients. According to the WHO classification, mucinouscarcinoma, metaplastic carcinomas and apocrine carcinoma responded poorly to NAC. The disease-free survival and overall survival were significantly worse for patients with metaplastic carcinomas (p<0.001 and p<0.001) and with invasive lobular carcinoma (p=0.03 and p<0.001) than other cancers. Despite their poor response to treatment, patients with mucinous carcinoma and apocrine carcinoma had a good prognosis.
The response to standardized NAC and prognosis varies for each histological type. For some types, the prognosis was not associated with the clinicopathological response to NAC. Innovative regimens should therefore be investigated for each histological type to achieve the best response.
Copyright © 2011 Elsevier Ltd. All rights reserved.
Mar 16, 2017 11:06AM voraciousreader wrote:
hope the above info gives you hope. Please share this with your wife's team. Plan on her doing well
Mar 17, 2017 06:15AM CareGiverHusband wrote:
Thanks so much voraciousreader!
Of course the part that I like to extract from the read is:
Despite their poor response to treatment, patients with mucinous carcinoma and apocrine carcinoma had a good prognosis.
And your final words!
She is doing chemo to chase a "stray node" in an inoperable location between her ribs. Seven more chemo days remaining... 6 after today.
I will have more questions when we see her oncologist today during chemo.
Apr 2, 2017 06:16PM Orawan wrote:
I don't know if anyone has asked this before, I have searched but can't find the answer anywhere. About the cancer has left its origin site, spread through the blood stream ,not lymph. How aggressive it is ? and Is it hard to heal ?
Would like to hear more about that.
Apr 8, 2017 04:14PM obsolete wrote:
So very sorry, Orawan, but unfortunately it's not a one-size-fits-all scenario, as you shall see from the snips I'm sending you with a PM (private message), since much of it is off-topic for this thread, if that's OK?
Mammogram, sonogram & MRI occult mucinous carcinomas tumors are not infrequent. Patients with multi-focal tumors tend to have more aggressive tumors & not always do as well as others, plus circulating tumor cells, especially clusters, can be present in our bloodstreams long before tumors develop. The microscopic & prognostic presentations can vary from lesion to lesion, whereby the quantity % of cellular structure differs. Also the mucin to cell ratio and the argyrophilic granule content at presentation. Small scant amounts of mucin, big nuclei, irregular nuclear outlines presence of nucleoli, if found, usually point to more aggressive mucinous BC also.
Additionally, our specific BC subtypes with our own different variants, our lifestyles and our genes are not all taken into consideration by the medical establishment in treatments, trials & studies. Medicine is imperfect. Wishing you the best, prayers & hugs!
Which molecular subtype of mucinous carcinoma is it?
MOLECULAR SUBTYPES OF BREAST CANCER: Luminal A, Luminal B, Triple Negative/Basal Like, HER2 Type, Claudin-Low & Molecular Apocrine subtypes all carry different risk levels, and are mostly used in research settings. (Source: Susan G. Komen)
Histological Types of BC : How Special Are They?
Immunohistochemical Surrogates for Molecular Classification of Breast Carcinoma
Blood sensitivity tests, Cancer genetic profiling CTC's, cell clusters & stem cells; chemo-sensitivity & chemo-resistance profiling. Please contact your Integrative Physician for more info:
CHEMO-SENSITIVITY - SOLID TISSUES (USA):
www.rational-t.com (specialty in cell clusters) California
Apr 9, 2017 10:25PM - edited Apr 9, 2017 10:27PM by bubbles17
I am unfortunately joining the MC club. First of all, wanted to say a big thank you to Voracious Reader for all the previous info in this topic, it's provided some incredibly helpful background info. I've now devoured all 61 pages!
I find myself somewhat atypical in my MC presentation. I am 31 and have a poorly differentiated high grade MC, which I understand is aggressive. My diagnosis comes after a pregnancy and directly after 17 months of breastfeeding. I also got two benign ultrasound results and a clear mammogram before DX, the cancer was picked up only by biopsy.
Last week I had a double mastectomy and was incredibly relieved to get the news that my sentinel nodes have come back clear and with clear margins on the dmx. My path report refers to to mucinous carcinoma but gives me no clues as to whether this is pure MC composition.
I'm waiting on on oncotype results but given my age, high grade (3), and Ki-67 score of 17%, plus the multifocal invasive tumours (8 of them!) and 70mm of surrounding high grade DCIS, I imagine chemo is likely to be recommended unless the oncotype score is extremely low. We also have a strong family history of breast cancer but I have tested as BRACA negative.
I'd be very pleased to hear from anyone with similar cancer makeup (high grade, multifocal, Er\pr+++, her-) and what treatment you opted for.