Mucinous Carcinoma of the breast
Comments
-
VR - Thank you for keeping track of all these studies for us! I had read that post when I first started coming to this thread but had forgotten about it. The study included a large number of women with PMBC. Wish they'd do one like that for the mixed kind too.
0 -
It's been awhile since I posted. Getting very close to my exchange for implants. Today I'm wondering can I be so very lucky to have gone through all the stress of breast cancer to find that I'm truly cancer free and the worries of getting it again are as low as the rest of women who have never had to worry about cancer? I am on 5 years of estrogen blocker, but so far that's turning out to be nothing. The statistics appear that women with early stage mucinous cancer are no more likely to get cancer again than anyone else. Am I understanding that correctly?
0 -
Livin.. For early stage mucinous breast cancer without node involvement, your lifespan is close to the equiviant to the general population. Glad to hear you are doing well! Thanks for posting.
0 -
Thank you for the info. I can breathe again! And hope everyone has good results!
0 -
Hi Gals, Just checking in to catch up with the latest info & updates. Livin you can certainly breathe again, and keep breathing. It is such a blessing to get to the other side of treatment. I am just 1 year ahead of you with the same excellent results and prognosis for the future. It is good news to hear that you are doing so well. We are so fortunate. Lots of prayers from the other side of the world for all of you who check in to this forum. Blessings Tricianne
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. Nov 2011 Mammogram all fine.
0 -
Dear Ladies,
Friday afternoon I got the preliminary results of my biopsy. The words 'Mucinous Carcinoma' is mentioned, together with cribriform nests. The 1.2 cm lesion was found on a routine mammograph and ultra-sound mid-March. 3 weeks later I had a MRI which confirmed that further research was needed and malignity probable. The biopsy took place 5 days ago. Lumpectomy is planned in three days' time. Tomorrow I'm having a bone scan, RX of the thorax, ultra-sound of the liver, ECG and appointment with the oncologist at the end of the day. On Tuesday I'll have an echomarking and the injection to find the sentinel node with scans after a few hours.
I live in Belgium where we seem to have excellent (and fast) medical care. Last week I was in NY where two oncologist looked at my mammograph (their comments a.o.: wooaw, the tomosynthesis your radiologist uses is hardly used in the US - too expensive), ultra-sound and MRI. They were both frightfully positive: we can't feel anything in your breast, so it won't be anything.
Obviously you cling to any little piece of hope given. My doctor here has always been much more down to earth: hope for the best, prepare for the worst is his credo. And unfortunately, right he was.
It is only this morning that I found this amazing forum and the very active Voracious Reader and TricianneAust. Thanks to you for providing us with so much information about a relatively rare form of breast cancer. I spent the day on your forum reading the whole 21 pages and making an extensive list of questions for the doctors. Tomorrow the Tumor Board - as you seem to call it - meets and I should have their feedback in the evening.
Radiotherapy is already a certainty. Further treatment will only be known after the full pathological report after surgery. Apparently in my case, the pathologist is present during surgery. He first analyzes the sentinel node and afterwards the tumor to see if they got clean markings all round. Depending on his findings they take out all the axillary glands immediately and maybe remove some more breast tissue. One other bad surprise I might have after waking up is that they might remove my nipple because of the proximity to the lesion.
Thanks for your support!
0 -
Virginie...Sorry to hear about your diagnosis. I'm glad that you found this thread and read all 21 pages AND took notes so you can ask your doctor questions so you can make an informed choice about your treatment. I wish you well with your active treatment. Hope you'll stay in touch and let us know how you're doing. Good luck!
0 -
Hi Everyone;
Just found this discussion. I was diagnosed in Jan. 2012 with muscinous carcinoma in my left breast. The ultrasound measures it at 5.4cm. I am 52 years old. The surgeon said with a tumor this size I should have chemo first. However, I've undergone 3 chemo treatments, and the tumor has not shrunk in size. I have not been told whether this is a mixed or pure muscinous carcinoma tumor. The oncologist is now saying I should have surgery immediately which I've scheduled this coming Wednseday. I am opting for a mesectomy.
These discussions raise key points I'd like to follow up on. What test is done to determine whether the tumor is pure muscinous or mixed? When is the oncotyp test done, before or after removal? Should Chemo be diagnosed before the tumor is remove and tested? Are there oncologist and surgeons who specialize in Muscinuous Carcinoma breast cancer?
Really appreciate any input you might have. Thank God for more knowledge!
0 -
Voracious Reader:
Thank you for your fast and kind reply. Of course I will keep you all posted. You have been such a great help so far that I would like to share with you whatever I can help all of the existing and unfortunately new victims. We are all helping each other and that is wonderful!
Forgot to say: I'm 52, pre-menopausal, two kids (last born at 29 y/o), breast-fed my children and yes, to go further on some earlier discussions: very mucous-prone (asthmatic - repeat bronchitis - repeat pneumonia - allergic - eczema...), only 1 year of OC. It would really be interesting to see if there is any link.
0 -
DTbrooks....First off, I'm sorry to hear about your diagnosis. Here's what I would strongly recommend you do..please read this long thread and you will find many answers to your questions. You'll also be armed with some good information to present to your doctors so that they can help you make an informed decision regarding treatment.
Just recently there was a study published that said that in the sample of patients used for the study, those patients with mucinous breast cancers who received chemo before surgery, were less likely to reduce the size of their tumors. However, it seems that despite not responding well to chemotherapy before surgery, they still had a good prognosis. So what happened to you is NOT a surprise. Here's the study...
Breast. 2012 Jan 23. [Epub ahead of print]
The differences in the histological types of breast cancer and the response to neoadjuvant chemotherapy: The relationship between the outcome and the clinicopathological characteristics.
Nagao T, Kinoshita T, Hojo T, Tsuda H, Tamura K, Fujiwara Y.
Source
Department of Breast Oncology, National Cancer Center Hospital, 5-1-1, Tsukiji, Chuo-ku, Tokyo 104-0045, Japan.
Abstract
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, mucinous carcinoma, 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.
BACKGROUND:
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.
METHODS:
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.
RESULTS:
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, mucinous carcinoma, 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.
CONCLUSIONS:
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.
----------------------------------------------------------------------------------------------------------------------
Regarding determining if your tumor is pure or mixed mucinous, that question will be answered after surgery. Since mucinous breast cancer is rare, often more than one pathologist will look at your tumor. Ask your physician to verify whether or not it is pure or mixed. If your tumor is ER+ and HER2 negative, you can request the OncotypeDX test to determine if you would benefit from chemo. However, since you have already had chemo and did NOT respond, I would think that having the OncotypeDX test done is moot at this point. You don't mention if you are pre or post menopausal. There are STILL lots of treatment protocols depending on your menopausal status.
Good luck with your surgery this week and keep us informed. I wish you well.
0 -
Has anyone of you ever wondered why peggym, who started this wonderful thread of a rare cancer which has linked people from all over the planet, not been present on the forum anymore? Or is that the question one should not ask? We only get the replies from the people who are still there, aren't we? Should we not ask our partners to at least follow up if all goes wrong? Or is that still a big taboo?
I'm new to BC and I'm pretty damned scared. Never knew what a sleepless night of worry was (except for the asthmatic attacks).
0 -
Virginie...you are presently at the most difficult time in the process. Deciding treatment and then during active treatment is an emotional roller coaster. Mentioning Peggy is not taboo. I like to think she has moved on to her new normal. Perhaps if she had an issue, such as side effects from treatment or heaven forbid a recurrence, she would return. I would like to move on and not return here, but I feel drawn here because I have and continue to place here all relevant info for journeymen like yourself. I hope that people like you WILL return after active treatment and continue to report on your outcomes.
I promise once you have a treatment protocol in place, you will begin feeling better.0 -
Amazing women, I learn more here than anywhere. I'm overwhelmed, though. Iinitial biopsy said DCIS. Had a lumpectomy 2 weeks ago. Results show invasive mucinous carcinoma. Grade 1. clear margins. but extensive DCIS not clear margins. Mystified that mucinous carcinoma diagnosis isn't even an option on our profile? But also generally mystified. Mastectomy scheduled for May 2. Gives me a week to learn more, Offered a larger lumpectomy with sentinel lymph node thingie. (ha.. how tired am I?) but mastectomy recommended (also with sentinel node thingie). My daughter had a rare and aggressive ovarian cancer and is doing extremely well 2 years after diagnosis. So important that I understand what's going on with me, just because that's true for all of us here on this site, but I want to reassure my family that although rare, it's not aggressive. yet I'm so tired I can't get through the posts. So, rare, but not aggressive, am I right? and is a mastectomy a usual protocol? I don't have huge breasts. much bigger of a lumpectomy wouldn't leave much anyway. And is it true that chemo isn't necessarily an ideal follow up for this type of cancer? ( I know the results from nodes plays a factor) Is this so rare that I should be going to a bigger center for a second opinion? Appreciate your feedback. I know I could read through all of this, but also know I'm very tired. And about the women on this site? wow. most compassionate collective of women ever.
0 -
Janet....First off....don't feel rushed into doing anything! If you feel you need a second surgical opinion, by all means ask for one. No one here can advise you whether or not to do a lumpectomy or mastectomy. That is a personal choice to make after consulting the breast surgeon. I wish you well with that decision!
Regarding sentinel node biopsy, that's become standard practice once you've been diagnosed with invasive breast cancer. So, doing that is a given regardless of whether or not you have a lumpectomy or mastectomy. Surely you can decline the sentinel node biopsy as well, but it is an important tool in making the formal diagnosis and helps guide treatment decisions. It is also a prognostic factor as well....especially for our type of breast cancer. Node negative pure mucinous breast cancer has a better prognosis than node positive.
Regarding "rare" and being NOT "aggressive." The fact that you are Grade 1 speaks volumes. Grade 1 is a slow growing, NOT aggressive cancer. The majority of mucinous breast cancers are Grade 1 or Grade 2. Grade 2 is an "average" growing cancer.
Regarding chemo, you can request that the breast surgeon order the OncotypeDX test if your tumor is ER+. Most mucinous breast cancers are ER+. The OncotypeDX test will tell you whether or not chemo would benefit you. Your MO will go over the results of the test with you.
Regarding going to a larger center because your breast cancer is rare. Honestly, I don't think that's necessary. Most MOs will only see a handful of patients with mucinous breast cancer during their career. They will defer to the 2012 NCCN breast cancer treatment guidelines to judge. While you're waiting, you might also like to look at the guidelines. You can google them! Make sure you look at the "Professional" guide rather than the "Patient" guide. The 2012 NCCN breast cancer treatment guidelines for professionals has way more information than the patient guide. They have a section specifically dedicated to mucinous and tubular (also rare) breast cancer and how to treat it.
Of course, if you are unhappy with the MO's treatment plan you can request a second or even a third opinion. You can also request that your case be presented to the hospital's tumor board if you have any doubts.
Good luck. Thoughts and prayers to you and to your daughter as well!
0 -
Hello,
Busy day for me:
- Bone scan injection;
- blood sample
- RX thorax;
- ultra-sound liver;
- ECG
- bone scan
- oncologist
- second opinion from another oncologist in another BC center.
No metastasis found! Great news, big relief. Hemangioma in the liver to be confirmed by MRI (but that seems to run in the family and not much you can do about it).
Final biopsy confirms MC (not yet sure whether pure or mixed), ER+8 , PR+8 (that's the grades they give here i.e. the highest +3 in the US?), and HER2+ they want to check further on the resection with maybe FISH analysis if IHC comes out again with same result.
The plan is: lumpectomy on Wednesday, radiation therapy to start in 4 weeks' time and as it stands now hormone therapy for the next 5 years. All to be confirmed end of next week.
What's worrying me most is the hormone therapy - Tamoxifen. I'm premenopausal i.e. not a lot of choice or did I get that wrong? Side effects do not seem appealing.
I'm worried because I'm acting too strong now. My usual little power girl, control freak, whatever you wish to call it. Sooner or later I'll break down and I do not know who to turn to. I've always been this strong person who everybody goes to when they have a problem.I feel like a porcelain doll which suddenly gets a crack and slowly but surely it falls into pieces.
However: la vita è bella!
0 -
Viraciousreader;
Thanks so much for your response. Great information! I feel armed and ready now to confront my Doctors! I Also, called another set of Doctors today to review my case in light of info shared in this discussion group.
Just one more question at this point. What questions should I be asking regarding harmonal treatment since I am premenapausal?
By the way, I had bronchitis as an infant, so that link between my diagnosis and my history with mucas exist. I think this group might be on to something, and these questions should be pursued through formal research.
I also breast fed all 3 of my children.
I will continue to check in on the discussions, and will definitely keep everyone posted on my progress. Again thanks for help. God Bless you all!
0 -
Viraciousreader;
Thanks so much for your response. Great information! I feel armed and ready now to confront my Doctors! I Also, called another set of Doctors today to review my case in light of info shared in this discussion group.
Just one more question at this point. What questions should I be asking regarding harmonal treatment since I am premenapausal?
By the way, I had bronchitis as an infant, so that link between my diagnosis and my history with mucas exist. I think this group might be on to something, and these questions should be pursued through formal research.
I also breast fed all 3 of my children.
I will continue to check in on the discussions, and will definitely keep everyone posted on my progress. Again thanks for the help. God Bless you all!
0 -
Dear Dear Voracious Reader.
You rock. Thank you for being the resource you are! Off to learn more.
Today I do feel supported by the medical system and feeling pretty safe in their hands. Learned my results do go to a board and the most 'expert' will be my doc) Phew.
0 -
Welcome to the newcomers! This thread has been so very helpful to me and I hope you will find it that way for you too. Voracious Reader and others keep us up-to-date! She is right that this time while you are waiting to learn the details and getting a treatment plan can be hard. Virginie, you've had a very busy day! I hope you sleep really-really well tonight.
One of the things that helped me was a post last November from Red Sunshine (you might search for it) about getting a second opinion on your pathology slides. I didn't see that post until after I'd made most of the treatment decisions. The second opinion revealed that I had "mixed" not "pure" mucinous carcinoma (or a hypercellular variant as the pathologist described it). My doctors don't feel that the info would have changed any of the their treatment recommendations but I think I might have been more satisfied if I had the info earlier in my journey. I had the second look at the pathology slides done at the university-based National Cancer Center designated research center in my state which is about three hours from my home. My case was also presented to a Tumor Board for treatment recommendations.
0 -
Virginie:
Below is the current best way to determine HER2 status:
Testing for HER2
Although several methods for HER2 testing have been developed, approximately 20% of current HER2 testing may be inaccurate. Therefore, the American Society of Clinical Oncology (ASCO) and the College of American Pathologists (CAP) have recommended guidelines in HER2 testing to ensure accuracy.
Breast cancer specimens should initially undergo HER2 testing by a validated immunohistochemistry (IHC) assay (ie, HercepTest, Dako, Glostrup, Denmark) for HER2 protein expression.[1] The scoring method for HER2 expression is based on the cell membrane staining pattern and is as follows:
- 3+: Positive HER2 expression - Uniform intense membrane staining of more than 30% of invasive tumor cells
- 2+: Equivocal for HER2 protein expression - Complete membrane staining that is either nonuniform or weak in intensity but has circumferential distribution in at least 10% of cells
- 0 or 1+: Negative for HER2 protein expression
Breast cancer specimens with equivocal IHC should undergo validation using a HER2 gene amplification method, such as fluorescence in situ hybridization (FISH). More centers are relying on FISH alone for determining HER2 status.
In general, FISH testing is thought to be more reliable than IHC, but it is more expensive. Equivocal IHC results can be seen in 15% of invasive breast cancers, whereas equivocal HER2 FISH results are seen in less than 3% of invasive breast cancer specimens and those that had previously been considered HER2 positive. Discordant results (IHC 3+/FISH negative or IHC less than 3+/FISH positive) have been observed in approximately 4% of specimens. Currently, no data support excluding this group from treatment with trastuzumab.
Newer methodologies for establishing HER2 status, including reverse transcriptase-polymerase chain reaction (RT-PCR) and chromogenic in situ hybridization (CISH), have not yet been validated. The interpretation for HER2 FISH testing (HER2/CEP17 ratio and gene copy number) is given below:
- Positive HER2 amplification: FISH ratio is greater than 2.2 or HER2 gene copy is greater than 6.0
- Equivocal HER2 amplification: FISH ratio of 1.8-2.2 or HER2 gene copy of 4.0-6.0
- Negative HER2 amplification: FISH ratio is less than 1.8 or HER2 gene copy of less than 4.0
0 -
Virginie...Golden01 is correct regarding getting a second opinion on the pathology slides. Hospitals such as MD Anderson and Johns Hopkins here in the States have pathology departments devoted to second opinions. You can check out their websites and learn more on how to get a second pathology opinion. I'm sure you can do the same where you live....
Regarding hormonals.....We have several threads here devoted to hormonals. Another helpful thread is a Stage 1 Grade 1 thread which discusses treatments for "favorable" breast cancers.
I was premenopausal when I started and chose Tamoxifen and Lupron (ovarian suppression). Over 50 when I was diagnosed, I also chose to do Zometa (bone building medication) infusion every six months for three years. We have several threads here devoted to Zometa as well.
I can honestly say that I've been fortunate to have no side effects from my treatment...except for some gyno issues...but those gyno issues began BEFORE my diagnosis and the hormonals have improved some of my issues and made worse some of the other. However, none of my gyno issues have been serious enough to change my protocol and despite needing several D&C's over the course of the past two years, I am very happy with my treatment plan and all of my physicians.
I firmly believe you need to find the doctors that you are most comfortable with, then find the treatment plan that you are most comfortable with, and if you are comfortable, and have few or no side effects, then that rocks! Likewise, I think your treatment plan can always change. That's why we have follow-up appointments. There is no one size fits all in cement treatment plan.
Good luck!
0 -
Regarding mucous...I don't think there's a connection....Not saying there isn't a possibility....but with all the reading that I do....I haven't come up with any literature suggesting the connection. Personally, I've never had an issue with mucous....except for the mucinous breast cancer.
0 -
It is such a bittersweet thing to see activity on this topic. I'm saddened that we have to go through this yet comforted by the fact I'm not alone. I work at a small cancer center and have chosen to have my surgery and radiation treatment here; however, for my medical oncologist, I have decided to go to a larger center. Since we are a 'rare' breed, I would like to be at a center where they would have more access to research/studies and perhaps additional 'rare' ladies, as ourselves. Then, if my diagnosis helps someone else in the future, then so be it! Not to mention, there's a highly qualified & recommended specialist there with an extensive CV.
I've already had my lumptectomy w/SLN bx and my re-excision (due to (+) DCIS margins). Today is my follow-up appt for the re-excision. I am not a fan of taking Tamoxifen and will def inquire as to alternative treatments but will do whatever I need to do to ensure I see my daughter graduate college and maybe even a grandbaby or two (my daughter is only 8 but I am determined!).
Virginie: I am very interested to know how our mucinous correlates with other mucous disorders (such as bronchitis and especially eczema since this has been an on-going issue for me). Was there a study done or is this a theory? Perhaps I'll inquire with my med onc.
Thanks bunches!!
0 -
Good luck Stena....You have a lot on your plate now. However, keep in mind that you have great prognostics!!!
0 -
Thanks, voraciousreader!! I must echo my gratitude for all you contribute to this blog. It's amazing how much comfort this site has already brought to my crazy world. 0
-
Janet/Virginie/Stena, so sorry you've joined us but as far as breast cancer goes, Mucinous Carcinoma is a 'good' cancer to have.
I've just finished most of the active treatments for MC and I can so relate to all your questions. VR is right, the pre-treatment time is by far the most confusing. Once you get on the moving sidewalk of surgery/radiation.... you just put one foot in front of the other until the end. I worried so much about tamoxifen too, but after being on it for 3 months now with no negative side effects, I'm relieved to remember that you mostly only hear about the bad case .... in many cases, tamoxifen is a non-event.
In an odd kind of way, the oncotype showed me that having had MC and being on Tamoxifen gives me a lower chance of getting fatal breast cancer than i would have had before MC (glass half full). So Stena, the chances of you seeing your grandbabies is very high :-)
0 -
Hi to all of you,
At the hospital ready for surgery. Thanks VR for the update on HER.
Stena, you seem so young. I understand you have issues with taking Tamoxifen. I'm ready for menopause mentally and agewise i.e. It does not bother me too much. But the side effects do, esp. gaining weight... 😄
Thanks Katiekabooom for your positive experience with Tamoxifen.
Got a lovely corner room at the hospital with a gorgeous tree right in front of me. Good vibes here.
I'll keep you posted how it went.0 -
Virginie: our thoughts/prayers are with you! I don't know if I would categorize myself as young, perhaps a young 43 y/o. :-) We got a late start at being parents.
I had my follow up appt yesterday with my surgeon. She was extremely proud of her work. :-) She said that no one wants cancer but since we have it, we have a good one to have and that many other breast cancer patients would prefer to have our type. I guess that made me feel better. My OncoType DX was 11 so praying for no chemo! I have my Rad Onc appt this Thursday then my Med Onc appt next Thursday.
Trying to keep my sense of humor up was extremely tough the first month. It's easier now. I continue to look for the silver linings to which there are many. I do feel blessed. I just need to do something with this 'experience' even if just for myself but it would be a blessing if it helped others. It's already made me look at life/situations completely differently. Thinking...healing.....praying.....thinking....
Peace to us all!!
0 -
Great news Stena!!!!!!!!!!!!!!
Virginie....Thoughts and prayers to you today!
I'm sure Tricianne will be by soon....She prays hard for us and all of our sisters. We pretty much have a lot to be grateful for....
0 -
Surgery went well. Sentinel node was clear (and hopefully this remains confirmed in the final pathology report). They had clear margins on the resection. The incision was done alongside the nipple i.e. scar should hardly be visible. Hardly any pain. So, overall good news!
0
