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Mucinous Carcinoma of the breast

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  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited November 2011

    Ovbru... I am sorry to hear that you experienced a rough ride on your chemo protocol. I hope all will be well now for you. I probably would have had the same hesitations as you had. With our rare type of cancer and being grade 1, I guess there isn't a "right" answer to whether or not the chemo route is the correct choice. Bottom line for you is that you have made your choice , like all of us did and then we all have to move on with living. Good luck to you! Thoughts and prayers to you.

  • bellydancer
    bellydancer Member Posts: 24
    edited November 2011

    Bellydancer "likes" the above post....

    Oooops wrong social media site : )

  • livin
    livin Member Posts: 16
    edited November 2011

    Hi all, this is to introduced myself.

    I was recently diagnosed with mucinous breast cancer and have a mastectomy tentatively scheduled for Dec. 20. I've read through this forum (skipping around, so I'll need to read all again) and as everyone else, I'm scared to death. I've been told "if you have to have breast cancer, this is the one to have". What I don't understand is, my surgeon told me this is a slow growing cancer, but my pathology report says HER2+ which tells me that isn't true. 

    Even after being told, I could not feel it. After the biopsy, I can now find it and it may be growing.

    After cancer is found, is there a test to make sure it is no where else in your body?

    How do you keep calm awaiting tests and surgery? You all seem so brave!

    I can't tell you how much I have appreciated this forum and have learned so much already!

    Thank you!

  • tricianneAust
    tricianneAust Member Posts: 153
    edited November 2011

    Hi Livin,

    I have just logged in to catch up with my prayer updates so for sure I will cover you with some additional prayer from "down under" in Australia. It is a very scary time when we all consider the worst and pray & hope for the best, so you sound pretty normal like the rest of us who sound very brave but we all have our worrying times. I have copied you the beginning of an article from Sandhya Pruthi, M.D. MAYO CLINIC re "HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells. In about 1 of every 5 breast cancers, the cancer cells make an excess of HER2 due to a gene mutation. This gene mutation and the elevated levels of HER2 that it causes can occur in many types of cancer - not only breast cancer.
    HER2-positive breast cancers tend to be more aggressive than other types of breast cancer. They're also less responsive to hormone treatment. However, treatments that specifically target HER2 are very effective." Plus with it being Mucinous Cancer it is a better one to be dealing with but I understand your dilemma "its advantageous being MC but disadvantageous being HER2 positive" However stage 1 is the better stage to pick it up after all.Yes you will get tests that suit your diagnosis to check if there is cancer elsewhere, that all happened prior to my op so no doubt that will happen for you with the preparation for your op.

    When initially its not palpable and you can eventually find you can locate it your fingers will keep checking it out, sometimes that in itself can give you the perception of it seeming to grow. Hopefully its not and with your op on Dec 20th it will soon be removed. So lots of prayers and encouragement. It does get better.

  • livin
    livin Member Posts: 16
    edited November 2011

    Thank you tricianneAust for your prayers and encouragement. And congrats on your 1 year checkup!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited November 2011

    Livin....I'm sorry to hear about your diagnosis.  I just want to add to what Tricianne mentioned (BTW...Tricianne....bless YOU!!!)...  You are correct....Having HER/neu positive is an unusual presentation for pure mucinous breast cancer and, according to the journal article below...it should be considered an AGGRESSIVE tumor.  Thankfully, with Herceptin and chemo, you should do well and not have a recurrence!  And the fact that it's ER+, you will also benefit from Tamoxifen or an AI... 

    I think the hardest time emotionally is when you are first diagnosed and then begin the journey of deciding what treatment protocol is best.  Once you have your protocol in place and begin treatment, you will begin the next step of the journey of finding your "new normal."   Until then, there are many places to go to find strength including here, I hope.  Feel free to come back here and let us know how you're doing.

     Thoughts and prayers to you!  Good luck with your treatment and please keep us posted.

    Am Surg. 2008 Feb;74(2):113-6.

    Recurrent pure mucinous carcinoma of the breast with mediastinal great vessel invasion: HER-2/neu confers aggressiveness.

    Adair JD, Harvey KP, Mahmood A, Caralis J, Gordon W, Yanish G.

    Source

    St. Joseph Mercy Oakland Hospital, Pontiac, Michigan 48341, USA.

    Abstract

    Mucinous carcinoma of the breast, also known as colloid carcinoma, is a less common variant of breast cancer constituting less than five per cent of breast cancers. We report the case of a 42-year-old premenopausal female who presented with a palpable chest wall recurrence 4 years after simple mastectomy, axillary node dissection, and TRAM flap reconstruction for pure mucinous carcinoma. The recurrent neoplasm was a pure mucinous carcinoma and was found to be invading the mediastinum into the great vessels. The tumor was estrogen receptor positive, progesterone receptor negative, and HER-2/neu positive, which is an unusual finding for mucinous carcinoma. The fact that this tumor demonstrated HER-2/neu positivity may explain the uncharacteristic aggressive nature of this normally indolent type of breast tumor. To our knowledge, this is the first reported case of any mucinous breast cancer invading the mediastinal great vessels and its subsequent en-bloc resection

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited November 2011

     Here's more info about the patient...After two years following the recurrence she is doing well!   Laughing

    Recurrent Pure Mucinous Carcinoma of the Breast With Mediastinal Great Vessel Invasion: HER-2/Neu Confers Aggressiveness

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    By Adair, Jamie D Harvey, Kyle P; Mahmood, Ali; Caralis, James; Gordon, William; Yanish, Gregory

    Mucinous carcinoma of the breast, also known as colloid carcinoma, is a less common variant of breast cancer constituting less than five per cent of breast cancers. We report the case of a 42-year-old premenopausal female who presented with a palpable chest wall recurrence 4 years after simple mastectomy, axillary node dissection, and TRAM flap reconstruction for pure mucinous carcinoma. The recurrent neoplasm was a pure mucinous carcinoma and was found to be invading the mediastinum into the great vessels. The tumor was estrogen receptor positive, progesterone receptor negative, and HER-2/neu positive, which is an unusual finding for mucinous carcinoma. The fact that this tumor demonstrated HER-2/neu positivity may explain the uncharacteristic aggressive nature of this normally indolent type of breast tumor. To our knowledge, this is the first reported case of any mucinous breast cancer invading the mediastinal great vessels and its subsequent en-bloc resection. Mucinous breast cancer has classically been known as a less aggressive type of tumor, which tends to have a better prognosis than other breast malignancies. These tumors occur in two forms, as either pure or mixed type, the latter being more common. The treatment of this type of breast cancer is similar to invasive ductal carcinoma. Current genetic techniques allow us to determine receptor status and predict how a tumor may behave. We are able to predict certain features and behaviors of breast cancer that we were unable to predict in the past. This has led to new and exciting treatment options for all types of breast cancer. In recent years, there has been a great deal of interest in HER-2/neu receptor status and the aggressive nature that tumors possessing mis receptor exhibit. In this case report, we present a recurrent pure mucinous tumor that demonstrated angiolymphatic invasion microscopically and grossly was found to be invading the mediastinal great vessels. The recurrent tumor was ER+/PR- and HER-2/neu positive.

    Case Report

    The patient is a 42-year-old premenopausal female who was diagnosed with a pure mucinous carcinoma of the right breast in 2001. A core-needle biopsy at that time revealed a pure mucinous tumor. The patient underwent simple mastectomy, axillary node dissection, and immediate TRAM flap reconstruction. The primary tumor was 3.5 centimeters in size with two positive lymph nodes (out of 20). Sentinel lymph node biopsy was not performed because there were clinically positive nodes in the axilla. A metastatic work-up consisting of routine lab work and a CT scan of the thorax did not reveal any metastases. The tumor was ER+/PR- and exhibited HER-2/ neu overexpression. Postoperative therapy included FAC (5- Fluoracil, Adriamycin [Pharmacia Inc., Kalamazoo, MI], and Cytoxan [Bristol-Myers Squibb Company, Princeton, NJ]) followed by radiation and tamoxifen citrate. The patient had been asymptomatic for almost 4 years. She had follow-ups every 6 months for the first 3 years and was then scheduled for annual visits. Shortly before her first annual visit, she noticed an enlarging chest wall mass over a period of 3 months. A metastatic work-up was initiated. CT scan of the abdomen and pelvis were negative for metastases. CT scan of the thorax revealed a large anterior chest wall mass measuring 4  x  4  x  7 centimeters causing local destruction of the sternum and mediastinal invasion (Fig. 1). CT guided needle biopsy was then performed and several specimens sent to pathology. The specimen consisted of connective tissue heavily infiltrated by a malignant neoplasm that was consistent with a pure mucinous carcinoma (Fig. 2). A whole body bone scan after intravenous injection of technetium- 99 showed only focal uptake in the right manubrium, which corresponded to the palpable sternal mass.

    The patient was experiencing significant pain and emotional distress over this rapidly enlarging cosmetically disfiguring chest wall mass. She was young, extremely motivated, and had no comorbid conditions. The case was presented at a multidisciplinary tumor conference for possible treatment options. Thoracic surgery was consulted for management of the chest wall tumor for possible excision. After a long discussion with the patient, and the limited treatment options, decision was made to proceed with surgery for excision of the chest wall mass with the understanding that this may be only palliative.

    FIG. 1. Preoperative CT scan of the thorax revealing a large anterior chest wall mass invading the mediastinum, (t = tumor, a = aorta, S = sternum)

    FIG. 2. Neoplastic hyperchromatic cells varying in size with some areas showing clusters and nests of neoplastic cells surrounded by pools of mucin. The tumor also demonstrates bony erosion. [H&E stain]

    En-bloc chest wall resection was done through a transverse incision directly over the tumor anterior to the manubrium. Dissection of the mass circumferentially revealed a fingerlike projection on the inferior aspect of the tumor projecting deeper into the mediastinum. There appeared to be direct invasion at the junction of the superior vena cava (SVC) and innominate vein (Fig. 3). The vascular invasion was not seen on the preoperative CT scan. Ballottable palpation verified the intravascular nature of the tumor. The decision at that time was to gain vascular control with inflow occlusion technique and remove the tumor. The area of the vein at the junction of the SVC and innominate vein where the tumor was infiltrating was resected and the tumor removed. The SVC was then closed primarily. The patient recovered uneventfully from the surgery with no complications.

    FIG. 3. Dissection of the tumor in the mediastinum ultimately revealed it to be invading the junction of SVC and innominate vein.

    Postoperatively the case was again presented at a multidisciplinary breast tumor conference for possible treatment options. The characteristics of the tumor, which included hormone receptor status, type of mucinous carcinoma, and vascular invasion were all considered. The past treatment of her primary breast cancer was also considered. The patient was offered and consented to the chemotherapeutic regimen consisting of Herceptin(R) (Genentech Inc., South San Francisco, CA) and Taxotere(R) (Sanofi-Aventis, US, LLC, Bridgewater, NJ). Radiation was contraindicated because the patient had received prior radiation to the breast.

    Discussion

    Mucinous carcinoma, also known as colloid carcinoma, is a less common variant of breast cancer constituting less than five per cent of all breast cancers. These tumors tend to be in multiple series, less aggressive in nature than other more common types of breast cancer, and are also more likely to occur in older patients with a mean age of sixty- seven. These tumors have substantially less nodal involvement, exhibit ER+/PR+, and are HER-2/neu negative compared with other common breast carcinomas.1^ One study reported that the survival of patients with mucinous carcinoma is not significantly different from that of the general population and that systemic adjuvant therapy and node dissection may be avoided in many patients with these types of carcinoma.5, 6 However, over 30 years ago, Silverberg et al.7 concluded there was insufficient evidence that treatment should be conservative. We agree with this statement and recommend taking into account the HER-2/neu status when deciding on treatment options.

    There is sparse information in the literature regarding the more aggressive variant of mucinous carcinoma with very few case reports.8 To our knowledge, mere are no reported cases of mediastinal vascular invasion of either pure or mixed type mucinous carcinoma of the breast. Pure mucinous carcinomas tend to have a less aggressive growth pattern and have less lymph node metastases.9 These tumors' recurrence rates tend to be late and few, with no increase in mortality compared with other breast cancer types.10

    Our case illustrates a patient with a recurrent tumor hormonal receptor status of ER+/PR- with HER-2/neu overexpression. ER+/PR+ tumors are known to have a better prognosis than ER+/PR- tumors. ER+/ PR- tumors express higher levels of HER-2/neu. HER-2/neu is seen in 20 to 30 per cent of all breast cancers and is well known to be a negative prognostic factor. These tumors also have increased disease recurrence and metastases. Signaling through HER-2/neu receptors reduces progesterone receptor expression in experimental models, thus ER+/PR- receptors with HER-2/neu overexpression are more likely to have a higher recurrence.11-14 This seems to be consistent with our recurrent tumor as HER-2/neu was positive by fluorescence in situ hybridization (FISH) analysis. This emphasizes the importance of HER-2/neu status regarding all breast cancer including the mucinous type.

    Diagnostic work-up of mucinous tumors may be approached by fine needle aspiration (FNA) or core biopsies. Core biopsy can achieve 100 per cent sensitivity and accuracy in the diagnosis of malignant lesions including mucinous carcinoma.15 Diagnosis is confirmed with histology revealing the mucoid component consisting of ribbons, small tubules, cribiform areas, and deposits of mucin surrounding isolated islands of cells with hyperchromatic nuclei. The Stanford School of Medicine Surgical Pathology Criteria defines pure mucinous carcinoma of the breast as a breast carcinoma of which at least one mird of the volume of the tumor is extracellular mucin throughout. Furthermore, if a tumor has focal areas that are not at least 33 per cent mucinous, then the designation is mixed mucinous/ductal carcinoma.16 The recurrent mucinous carcinoma in our case was found to be invading the junction of the superior vena cava and innominate vein. The veins were resected and the tumor completely removed. Vessel reconstruction after resection can be approached with several different variations and have been described primarily for lung cancer invading the great vessels. To our knowledge, resection of a great vessel has never been done for vascular invasion of a mucinous breast cancer. The tumor and vein were resected and a direct running suture repair was performed.

    Postoperatively the patient recovered without complication. She was placed on Herceptin(R) with chemotherapy because it has been shown to benefit patients with HER-2/neu positive metastatic breast cancer.17 After en-bloc resection of the tumor and adjuvant chemotherapy, the patient has had follow-ups with periodic CT scans of the chest and abdomen and most recently with a PET scan. Nearly 2 years after surgery for recurrent disease, the patient remains asymptomatic and does not have any evidence of metastases on imaging.

    Although the literature generally confers a mucinous type of breast cancer as being a less aggressive tumor of the breast, it may behave uncharacteristically, especially when HER-2/neu receptor positive. When the patient presented to us 4 years after her initial surgery with a disfiguring recurrent breast cancer involving the chest wall, it presented a challenge. Due to the nature of the local recurrence, the patient's age, good health status, and motivation, en-bloc resection of the chest was performed. The patient received adjuvant therapy after recovering from surgery. We are pleased to report that after 2 years, the patient is alive and well with no evidence of recurrent disease.

    Source: redOrbit (http://s.tt/14i9k)

  • tricianneAust
    tricianneAust Member Posts: 153
    edited November 2011

     Oh dear I keep losing the reply tonite, where are they flying away to? Thanks Voracious Reader I knew you would have some significant research at your finger tips. Livin we hope to hear how its going for you and what preop tests you have to checkout that all is well elsewhere in your body. Thanks for noticing my good mammogram results in my signoff. I have a long list of all you gals to keep covered so Hi to Golde01, bellydancer PLJ, Flanette, redsunshine, buburuzza, cider 8,  Figlia and others I had better send this reply before it too disappears.

    Some verses that keep my batteries recharged. Matt 6:34"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comesPsalm 73:21-26 My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever." (NLT)

    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 2011Mammogram all fine.

  • livin
    livin Member Posts: 16
    edited November 2011

    voraciousreader - Thank you all for the info! OK, I feel really stupid now. I reread my pathology report and I am learning I need to listen better to my doctor. The only reason I'm telling on myself is to show how when in fear, my brain doesn't function well.

    The report said Prognostic Studies: ER/PR - yes / Her-2  - yes / Ki-67 - yes. My interpretation is that all were positive. What it really was is that they were requested.

    Results are ER/PR positive, Her-2 "no overexpression detected", Ki-67 3% positive.

    My doctor said "slow growing", no radiation if mastectomy instead of lumpectomy, no chemo unless in my sentinel nodes, and anti hormone meds to keep it from recurring.

    I hope this all turns out to be true! This is better than the road my mind had put me on.

    tricianneAust - I need to print out Matt 6:34 and put it on a wall in front of me to read every 5 min. to retrain my brain to live in the present and trust more in God. Thank you!

    Now to go correct my footer info. 

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited November 2011

    Livin...I am pleased to read that you have EXCELLENT prognostics!  Now, you've just shown EVERYONE how important it is to have a copy of your pathology report!  I also don't think it is that unusual to NOT understand clearly what the doctor tells us when we are first diagnosed.  I think they think we understand what they are saying...but more often than not, our brains are numb...and all we focus on hearing is the word, "cancer."  Also, not being familiar with cancer jargon, it is quite understandable how confused we can all get....

    Thanks for posting and don't feel embarrassed.  We're on this journey together and you've pointed out a very valuable lesson for all of us.  GET THE PATHOLOGY REPORT AND DO WHAT YOU NEED TO DO TO UNDERSTAND IT. 

  • tricianneAust
    tricianneAust Member Posts: 153
    edited November 2011

    So glad Livin to read about your confession, yes you postively needed the HER prognostic results. I like the definition of FEAR False Evidence Appearing Real. We panic and we do some Maximisation where we go to the worst possible result and sometimes we Minimise where we do some denial and don't want to take it in at all. So your actual outcome is a wonderful result. Livin I have to confess I have never been able to alter my signoff, I have tried several times but for some reason it doesn't take. I have to go in and submit my reply then do an edit each time.

    The verse in Matthew is the one I have to carry around with me constantly so that I can refocus on the issues ahead each day, so expect you will find it helps you to do this too.

    VR so true about the pathology report. When we have all the information it factually gives us and get some understanding of the complexity involved it makes the planning pathway a clearer one. Must fly visitors at the front door.

    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 2011Mammogram all fine.  

  • figlia
    figlia Member Posts: 3
    edited December 2011

    Dear All, tricianneAust, voraciousreader...

    Some update from me....eventually I went for chemo 4x TC regimen last Thursday...main reason is because of my age and i am being cautious myself because I don't want this thing to happen again as there are some history of breast cancer in my paternal family.

    Now is my 8th day after chemo (already start working since yesterday)...it went pretty smoothly except for the some mild side effect here and there.

    I didn't experience so much of nausea, and thank God no vomitting. The toughest was the neulasta jab, I experience bone and joint pains for 2 days....but thank God now they have went away.

    However, started to experience funny2 thing since yesterday (which is 7th day after chemo) such as nosebleed, irregular period terrible sore throat. Anyone experience that and mind to share their experience?

    Just hope to sail through it!

    Thanks for Mat 6 and Psalm 73!:)

  • tricianneAust
    tricianneAust Member Posts: 153
    edited December 2011

    Hi Figlia, thanks for your chemo update, haven't had chemo myself, several friends have that are sure that anything unusual is caused by the chemo. Hopefully some knowledgeable women who have been down the chemo pathway can share their experiences. Meanwhile lots of blessings & encouragement.Tricianne

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

    Figlia...Thanks for posting....  Not sure about the chemo side effects.  Might you call your medical oncologist and ask?  Furthermore, there are several threads like this one,  devoted to other topics such as Chemotherapy.  Perhaps you might like to read through those threads as well and see what others have said about their side effects.

    Please continue to let us know how you're feeling!  Thoughts and prayers to you and a happy holiday!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

    Here's Johns Hopkins, Lillie Shockney's latest question and answer regarding Mucinous breast cancer:

    47 year old dx w/multifocal Grade 1 Mucinous IDC. Had mastectomy.Had 3 sentinol nodes and only one had 1mm of micromets and 1lymph node + for .1mm of micromets. Onco type score 6 (5% recurrance in 10 years). ER+9.3,PR+8.3,HER2-8.7. Absolute benefit of Chemo was -2% on OncoDX. Surgeon and oncologist struggled as to which Stage(2or3) to make cancer and decided to add up sizes of multifocal tumors and make it Stage 3a. Because of her rare cancer we had asked her case to be reviewed by 7 breast oncologists of tumor rounds at Tom Baker Cancer Centre in Calgary. They all agreed to treat with Tamoxifan, 2 said Tamoxifan only and 5 said to treat also with 4 cycles of low dose chemo(dosetaxol, cyclophosphamide) OR with Zoladex instead of chemo.We are afraid of chemo but will Zoladex in conjunction with Tamoxifan be a better alternative to low dose chemo and its potential toxic side effects in this case as,according to the OncoType DXtest, chemo does not have much effect if any on Mucinous Grade 1 cancers? really need your opinion as the oncologists are not willing to commit to one treatment over the other. The Zebra study in Europe 10 years ago says Zoladex is just as good if not better than chemo in these types of cases. Your thoughts?
    RepliedJHU's Breast Center Reply
    12/3/2011Thank you for turning to the Johns Hopkins Breast Center. There is much uncertainty here. Mucinous IDC probably was not well represented in the samples where/when Oncotype was validated, so whether the RS is applicable is unknown. Similarly, micromets cloud the utility of oncotype because again, we didn't score micromets in the studies from which oncotype was validated. That said, the RS does suggest this is a cancer that is low risk and not chemosensitive, and therefore the value of chemotherapy is questionable as well.  Adding ovarian suppression to tamoxifen is still very much a research question and whether this will have added value to hormone therapy is currently unknown, though some doctors do recommend this. 

    Because there is no absolute right or wrong here, our best advice is to go seek a second opinion from a different institution, preferably a large academic breast center where your case can be discussed and the benefits vs. risks can be brought forth to help you make an informed decision. A forum such as this is not adequate to really help you in this regard.

    Hope this helps, and best wishes!
  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

    Oy!  This is SCARY!  When given slides from fine needle biopsy were given to pathologists to identify mucinous breast cancer...11% incorrectly diagnosed it as being benign!  This again reinforces the understanding that with "rare" breast cancers, pathologists need to do a better job of familiarizing themselves with the diseases....

    Arch Pathol Lab Med. 2011 Dec;135(12):1533-8.

    Performance characteristics of mucinous (colloid) carcinoma of the breast in fine-needle aspirates: observations from the college of american pathologists interlaboratory comparison program in nongynecologic cytopathology.

    Laucirica R, Bentz JS, Khalbuss WE, Clayton AC, Souers RJ, Moriarty AT.

    Abstract

    Context.-Mucinous breast carcinoma has characteristic cytologic features, but few studies exist that analyze the reproducibility of this diagnosis.   Objective.-To analyze participants' diagnosis of mucinous carcinoma in breast fine-needle aspiration (FNA) slides distributed in an educational interlaboratory peer comparison program.   Design.-Participant responses for FNA slides with a reference diagnosis of mucinous carcinoma, distributed between 2001-2008 in the College of American Pathologists Interlaboratory Comparison Program in Nongynecologic Cytopathology, were evaluated for concordance with the general category and reference diagnosis of mucinous carcinoma.   Results.-Of 8061 responses, 6353 (78.8%) were categorized as malignant; 775 (9.6%) as suspicious; and 933 (11.6%) as negative. The most frequent incorrect responses for the benign category included fibroadenoma (51.7%), nonspecified benign lesion (12%), fibrocystic changes (7.8%), and fat necrosis/granulomatosis/foreign body reaction (6.9%). Conventional Papanicolaou-stained preparations were reviewed for 58.7% (4732) of responses; of these, 39.4% (3177) were from modified Giemsa-stained smears and 1.9% (152) from ThinPrep slides. Papanicolaou-stained conventional smears had the lowest concordance (86.5%) when compared to modified Giemsa-stained smears (91.2%) and ThinPrep challenges (92.1%) (P < .001). Participants specifically diagnosed mucinous carcinoma 37.3% of the time, and modified Giemsa-stained challenges performed best (43.1%, P < .001). There was no significant difference between cytotechnologists' and pathologists' responses (87.9% versus 88.2%; P  =  .69).   Conclusions.-Mucinous carcinoma in FNA was not accurately identified in a glass slide interlaboratory comparison program. We observed better performance with modified Giemsa-stained and ThinPrep slides than with Papanicolaou-stained preparations. The most common response for the benign category of mucinous carcinoma was fibroadenoma. Increased awareness of the cytologic features of mucinous carcinoma may improve accuracy in breast FNA.

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited December 2011

    Last January my left breast was dx with pure mucinious cancer. I didn't have surgery until last March. My right breast is a different story...no mucinious, mostly dcis, and of late idc.

    My bs has been encouraging me to do a blmx. Although the left beast had a more favorable cancer, she thinks it's at high risk for future cancers. I said that I've read that mucinious cancers don't usually spread beyond the breast. She said today she has a patient who was dx with it 8 yrs ago and is now stage IV. The bs said that cancers, even mucinious can mutate and progress. VR...have you heard about mucinous cancers mutating into more aggressive cancers?

    So...for now, I'm doing a blmx although the bs said even the day of the surgery I can change my mind.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

    Eve...there is a school of thought regarding tumor biology that cancer falls into three categories. The first is that the cancer is so aggressive, presently there is no effective treatment. The second type is such that starts out indolent and then grows more aggressive and may or may not be ultimately treatable and then there are indolent ones that will not affect mortality. Have I specifically heard about indolent mucinous cancers growing more aggressive? No I haven't. However, I was told that indolent cancers may need to be treated longer. Furthermore, I was told once you have a breast cancer you are at a higher risk of getting a new cancer which might be more or less aggressive than your previous one.

    And while we're on the subject...there is suggestion that some cancers disappear on their own.  With regard to the statement that your doctor made about someone being diagnosed with metastatic breast cancer 8 years after a mucinous diagnosis.  Yes.  I would think that is possible.  However, as my doctor said to me, you really have to carefully assess each case.  Even among mucinous breast cancers, each tumor and it's ultimate behavior is unique AND you NEVER know how much faith you can have in each specific pathologist's report.  If you look at the article that I just posted above, you will see that 11% of the pathologists got the diagnosis of a mucinous tumor WRONG.

    I wish you well with your upcoming surgery.

  • JL2011
    JL2011 Member Posts: 2
    edited December 2011

    I recently diagnosed with pure mucinous carcinoma at age 40.  Have the mastectomy done on 11/7 with tumor 3.5cm, Stage IIa, Grade 1.  Oncotype score is 23 which means 15% of recurrence in the next 10 years.  Score 23 is considered between low and high risk(in grey area, low end of middle risk) with ER+9.3, PR+8.3 and HER2-9.5.

    My Oncologist reccommeded with chemo for future insurance, but I really struggling with the benefit that I will receive.  Any advice or similar situations that you could share with me?  I am worrying but would love to avoid chemo if possible?

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

    Jl... Sorry to hear about your diagnosis. According to the 2011 NCCN breast cancer treatment guidelines, chemo is usually recommended for mucinous tumors over 3 cm. If you are still unsure about what to do, ask that your case be reviewed by a tumor board or seek a second opinion. Also discuss ovarian suppression. Good luck and please keep us posted how you're doing.

  • bellydancer
    bellydancer Member Posts: 24
    edited May 2014

    Hi JL2011

    You and I have verrrry similar DX including age at DX.

    Feel free to message me privately.  The choice to do chemo is a difficult decision.

  • bellydancer
    bellydancer Member Posts: 24
    edited December 2011

    VR,

    See anything ineresting out of San Antonia for us yet?

    I am going to look later tonight.

  • jazz3000
    jazz3000 Member Posts: 109
    edited December 2011

    Hope all goes well for everyone. Eve good luck to you. Hope you find your answers.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

    Belly dancer... I am drooling over the data! I am very encouraged by Gnant's Zometa study for premenopausal women and ovarian suppression. Also like the study that nuns should take The Pill to reduce their risk of breast and other cancers. Malcolmn Gladwell wrote an essay back in 2000, about the inventor of The Pill. His story, John Rock's Error discussed how when the pill was invented it should have been marketed with the perception in mind that it reduced cancer risks and then he wouldn't have had all the aggravation with the Church.





    The other news today came out of Europe. The British Medical Journal published the results of the latest study commissioned by the British Cancer Czar to settle the controversy there regarding mammography screening. Bottom line... Screening is creating more harm than good for many more women. After the latest news from Canada panning screening for women 40-49.... It looks like there will be no end to this controversy.... Stay tuned!

  • Marjiemom
    Marjiemom Member Posts: 4
    edited December 2011

    My breast cancer is also called mucinous carcinoma.  I have been told by the oncologist and radiation oncologist that "if you are going to have cancer" this is the "best" one to get.  The disadvantage here was that my 1.5 cm lump could not be felt.  A very alert (bless him) radiologist found it.  The character of the cancer made it hard to see on the first lumpectomy surgery as well, and I had to go in again for "clean margins."

    All this said, I feel very fortunate to have no nodular involvement, and a grade 1 cancer.  The defining moment in being able to establish a treatment plan was to get an Oncotype Dx test on my tumor.  They give you a "recurrence score" between 1 and 100 after comparing the DNA of your tumor to a large database of other women with breast cancers.  My score came up at "5" which means I have probablly less than a 5% chance of recurrence with radiation only. This meant it was very easy to make the treatment decision and "move on."

    Mucinous carcinoma is not a dire diagnosis.  If you are very worried (who isn't?) talk to the oncologist about the Oncotype Dx and you will be able to make a more informed treatment decision.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

    Marjiemom... Sorry to hear about your diagnosis and that you needed a re-excision. Sounds like you have wonderful prognostics! Glad you are now on the road to enjoying life! Keep us posted.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2011

    Bellydancer...I almost forgot...the study on brachytherapy is VERY important!  It seems they did meta-analysis using Medicare data and found that women who had the experimental localized radiation, as opposed to whole breast radiation had TWICE as many problems and mastectomies as the women who had whole breast radiation.  While the numbers for both are not large, 4% for the ones who had brachytherapy vs 2% for those who had whole breast radiation, the numbers are alarming to those who are studying this still early and controversial treatment.  Neither Johns Hopkins nor Dana Farber will participate in any brachytherapy clinical trials.  Just want to add, I was offered it and REFUSED.  I think many women like me, who have very localized, favorable tumor characteristics are being offered it.  My sister's best friend was recently diagnosed with tubular breast cancer and she had brachytherapy.  I did not go into a discussion with either of them about why I declined.  I will admit here, that once I did my research and saw how opposed Johns Hopkins was to the procedure, it was good enough reason for me.

    Bottom line is everyone needs to do their own research and come up with a decision that suits their comfort level.....

  • Golden01
    Golden01 Member Posts: 527
    edited December 2011

    Oct 25 - Was diagnosed 0n 7/8/11 with mucinous carcinoma in left breast, lumpectomy on 8/2/11 with re-excision due to postive margins, pathology report showed low and intermediate multifocal DCIS on four margins, tumor was .9 cm, DCIS had not been seen on mammagram or MRI, bilateral mastectomy with first stage reconstruction on 9/8/11, pathology report showed flat epithelial atypia in the right breast, nodes negative on right and left, OncotypeDX came back at 27, progesterone receptors were positive on the original test from the biopsy but changed to negative in the results from the Oncotype DX. Oncologist is recommending four rounds of chemotherapy over 12 weeks. When I was diagnosed, I was told this was a "good kind of cancer" and that other than the lumpectomy and radiation, I probably wouldn't need any additional treatment. Radiation is off the table after the bilateral mastectomy but at each step the results have not been what was expected. I'm heading to a NCI designated research center for a second opinion next week before making the decision on the chemotherapy.

    Have been slow in posting. Went for my second opinion at the NCI designated center in my state in early November and in spite of my Oncotype score of 27, the head of the Breast Cancer Multidisciplinary clinic recommended that I not have chemotherapy due primarily to the size (<1 cm) of my tumor and, of course, because it is mucinous. She indicated that few patients with tumors of <1 cm were included in the development of the Oncotype test and that the results needed to be considered in light of my entire clinical picture. She said my prognosis is "fantastic". Bottom line, "size matters" was her view. Everything she said made sense to me and my husband and my oncologist back at home concurred. I've started on tamoxifen and will switch to an AI down the road. My bone density test came back showing osteopenia so we figured a couple of years to work on my bones might be useful. Have completed my fills and am scheduled to have the expanders replaced in January so things are moving along.

    Again, I appreciate all the information that has been posted.  Making the decisions about treatment isn't easy and hearing from others has helped.

  • JL2011
    JL2011 Member Posts: 2
    edited December 2011

    Originally, I had an impression that my mucinous type of cancer was considered as "pure" because there were no other type of cancer was mentioned on my pathology report.  However, one of the oncologist commented that with an Oncotype score of 23, there's no way I have a "pure" mucinous cancer, therefore, he recommended to proceed with chemo treatment.  How can we define "pure" vs. "mixed" mucinous?  It was not mentioned on the pathology report, can anyone please advise?       

  • Golden01
    Golden01 Member Posts: 527
    edited December 2011

    I'm like you, because no other type of cancer was mentioned, I had understood my mucinous was "pure". When I went for the second opinion at the NCI designated center in my state, they did not review the actual pathology slides. Based on info in this forum on the need for second opinions, the recent article about difficulty in correctly identifying mucinous, and wanting to be sure I've left no stone unturned, I've requested that the slides get the second opinion look. The comment from JL2011's oncologist also concerns me since my Oncotype was 27. Will post again when I know more.