Topic: Mucinous Carcinoma of the breast

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Apr 24, 2009 07:43AM

Posted on: Apr 24, 2009 07:43AM

peggym wrote:

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!

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Sep 21, 2012 11:24PM cider8 wrote:

Ladies, I love your posts. I have a couple of issues going on right now. One is a gyn issue. I had a trans vag ultrasound and subsequent uterine biopsy. Very heavy and long but infrequent periods. I've been on tamoxifen for under 1 year. I had a trans vag u/s when I was first diagnosed with breast cancer 1 1/2 years ago. I don't thing there will be a problem w/biopsy results, but still need to deal with heavy bleeding. Plus a 4cm ovarian cyst we decided to just leave and check again in 3 months. So currently waiting on biopsy results.

My other issue is big. I had a 3rd recon surgery 2 weeks ago. Some tissue was removed from my breast and my PS sent it to pathology on a gut feeling. Inside the tissue, a seroma, the pathologist found some cancer cells. I'm still waiting on the receptor info before I can have it all explained to me. My breast surgeon is flabbergasted that the cells were found within belly fat (my breasts are now made of belly fat, BMX had clean margins). Initially I was told the cells were DCIS, but the path report I saw (dated after the initial in office discussion) said it should be classified as invasive. Mucinous not mentioned. So right now I am confused and in limbo, but I don't want a half discussion about it without the receptor info. ugh the waiting. My family is scared and I'm trying to keep them calm while I'm waiting for all the info.

Feelingthemagic, it's so thrilling to hear you are going to be a grandma!

~Paula~ [R] Pure Mucinous, DCIS, & IDC. BMX w/DIEP in NOLA 5/11; 12/11; 9/12. DD AC/T end 9/11. Tamox. 2mm IDC found 9/12 = 33 rads end 01/13, Oncotype 34. [L] IBC = TCx6 end 7/13, MX (remove flap), 44 rads (2x/day) end 10/13. Zoladex & Arimidex. Dx 2/25/2011, IDC, 1cm, Stage IIA, Grade 2, 1/21 nodes, ER+/PR-, HER2- Dx 4/5/2013, IBC, Stage IIIB, ER+/PR+, HER2- Dx 8/22/2013, IBC, Stage IIIC, Grade 3, 10/28 nodes, ER+/PR+, HER2-
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Sep 24, 2012 10:39PM voraciousreader wrote:

Cider...I am sorry to hear that you are having a set back.  I've been busy researching your situation because I, too, have never heard of this before.  I've got some interesting leads and will post once I have some more information.  Please keep us updated.  Hang in there.  Hopefully, this is just a local recurrence which will be VERY TREATABLE....

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Sep 25, 2012 12:01PM cider8 wrote:

Voracious! I can't believe you are researching my bizarre situation! I am touched. It sort of scares me that my doc has never come across my scenario, like cancer is getting smarter.

Some good things today. My uterine biopsy was all normal, which I was very confident about. My gyn suggested I try Aleve to curtail some of the heavy bleeding. Um, it seems to have worked! I'm still spotting on day 9, but I'll take it over saturation within 2 hours! Not sure about why Aleve works.

The next good thing was I found out the holdup on my results are due to oncotype testing. I didn't know my doc requested that, which apparently takes 2-3 weeks. So more waiting. Then my breast surgeon will discuss with me and I can send on to my MO and RO. Voracious, I don't know if my BS is always so dramatic or if it's just with me. He told me nothing about me has been typical. He was so fired up when I met with him; he's been doing this 35 years and is even a medical advisor for BC.org (or something like that).

Here's some verbiage from my path report, if you are so inclined to want more detail. Hematoma with recurrent high grade ductal carcinoma on the inner lining of the hematoma. ... Some sections [of hematoma cavity] show malignant cells and ductal structures along inner lining. A smooth muscle myosin heavy chain immunostain reveals that these malignant clusters are not surrounded by a myoepithelial layer. Therefor this qualifies as an invaisive carcinoma. ... Clusters form ductal structures and relatively solid nests. Moderate to severe pleomorphisism is seen. Focal necrosis is seen. Mitotic figures are seen. Classified as high grade.

My initial DCIS was high grade. Both my mucinous and regular IDC were grade 2. I don't quite understand the path report, but my doc will explain once oncotype is in. I thought pleomorphisism was lobular not ductal. My understanding is that focal necrosis not good, making it high grade. Off to see what mitotic means.

~Paula~ [R] Pure Mucinous, DCIS, & IDC. BMX w/DIEP in NOLA 5/11; 12/11; 9/12. DD AC/T end 9/11. Tamox. 2mm IDC found 9/12 = 33 rads end 01/13, Oncotype 34. [L] IBC = TCx6 end 7/13, MX (remove flap), 44 rads (2x/day) end 10/13. Zoladex & Arimidex. Dx 2/25/2011, IDC, 1cm, Stage IIA, Grade 2, 1/21 nodes, ER+/PR-, HER2- Dx 4/5/2013, IBC, Stage IIIB, ER+/PR+, HER2- Dx 8/22/2013, IBC, Stage IIIC, Grade 3, 10/28 nodes, ER+/PR+, HER2-
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Sep 25, 2012 08:59PM voraciousreader wrote:

Cider....I continue to research your situation.  I am waiting for replies from authors of a study.  I hope one of them answers me and if your sitution relates to their study.  I often find most researchers very approachable about their work.

I also want to add that the DH has an extremely rare genetic metabolic muscular dystrophy.  It took us TWO DECADES for him to get diagnosed.  And when he did get diagnosed, there were fewer than 500 people in the world with the disorder at the time!  His rare disorder prepared me for our disease.  When I was told I had mucinous breast cancer and that it was only found in 2% of breast cancer diagnoses each year in the US, when I did the math and realized there were between 200-400 cases, I didn't think it was THAT rare and that I was so special......

Since he was diagnosed 15 years ago, I've painstakingly researched his disorder.  Thankfully, we work with the most BRILLIANT clinicians AND researchers.  Really.  It never ceases to amaze me how brilliant these people are.  If you have some time and are interested in watching a film based on one of the DH's physician's patients, you might enjoy watching, Extraordinary Measures with Harrison Ford.  Another important film, Lorenzo's Oil.  The DH takes an oil similar to Lorenzo's...That film really explains the complexity of rare genetic metabolic diseases.

I'm going to continue researching your situation.  I'll throw out some firmer ideas once I research your latest information.  My hunch right now may have something to do with the fat transfer.  I'm wondering too about self-seeding...and/or an iatrogenic source.....

Without a doubt, while your situation seems complicated and one for the books, I want to assure you that the DH has been, and continues to be, written up in the medical journals and is still kicking!!!!!  I always say with a macabre sense of humor that his team do a GREAT job of keeping him alive so they can keep publishing!!!  Hang in there!!!!!!!!!!!

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Sep 25, 2012 09:28PM - edited Sep 25, 2012 09:30PM by tricianneAust

Well Cider8 I am certainly doing some praying for you dealing with this new situation. Voraciousreader I shall also be doing some great research prayers for all your investigations plus prayers for plenty of energy. Lots of encouragement  and blessings to all who login here.

Tricianne

TricianneAust Dx: 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. Dec 2021 Mgram 11yrs ok.
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Sep 25, 2012 09:47PM cider8 wrote:

You make me wonder if my BS is busy trying to figure this out. Part of this is strange because my PS and BS are in New Orleans and I'm in St Louis. I can't just go see them. Did I mention my PS only had one other patient develop a breast seroma Stage 2 or later? She had an implant. So very unusual for me to have developed a seroma. They wondered if I developed the seroma to corrall the cancer even. I've still got one breast drain in almost 3 weeks later, so I have a juicy tendency still. I researched breast seromas in fat transfer patients and found risk factors as over weight and high blood pressure; I have both. I was on the cusp of obese, but I've since lost 25lb, with 20 to go to get out of overweight range. It seems too simple to blame it on those things, though. Especially when top doctors in the field haven't seen it before.

You story is fascinating and amazing. I have an 11 year old daughter on the autism spectrum, which comes with it's own myriad of medical issues. While none of her issues were/are anomalies, I still had to muddle through them for years, one at a time. Most of her issues I pursued on a hunch, not at the direction of a professional. Mother's instinct! And I have lots of local resources and strong public education resources at my disposal. I feel like I earned my college degree just to be a parent and wonder how other parents who don't have my time or stubborness are able to get the best care for their special needs child (or don't get the best care). I often feel that if I hadn't needed to learn how to be a fierce advocate for my daughter, I might not be as good as an advocate for myself.

~Paula~ [R] Pure Mucinous, DCIS, & IDC. BMX w/DIEP in NOLA 5/11; 12/11; 9/12. DD AC/T end 9/11. Tamox. 2mm IDC found 9/12 = 33 rads end 01/13, Oncotype 34. [L] IBC = TCx6 end 7/13, MX (remove flap), 44 rads (2x/day) end 10/13. Zoladex & Arimidex. Dx 2/25/2011, IDC, 1cm, Stage IIA, Grade 2, 1/21 nodes, ER+/PR-, HER2- Dx 4/5/2013, IBC, Stage IIIB, ER+/PR+, HER2- Dx 8/22/2013, IBC, Stage IIIC, Grade 3, 10/28 nodes, ER+/PR+, HER2-
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Sep 27, 2012 11:59PM voraciousreader wrote:

Sisters....I just received the MOST TERRIFIC NEWS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Britta Weigelt, Ph.D. and her colleague Jorge Reis-Filho, Ph.D., who study rare breast cancers and have a very special interest in mucinous breast cancers, will be moving to Memorial Sloan Kettering in New York in November!  Presently, she and her colleague are in England.  I am so excited for them!  And sisters...guess where VR lives??  Yep!  ON THIS SIDE OF THE POND!!!!!!!!!!!!  I will be meeting with her personally, once she gets settled.  Perhaps in January.  Stay Tuned!

Cider....I've been in touch with one of our other sisters here at BC.org and we've been researching your situation.  Presently, we both think that the pathology report with the Oncotype test really needs to be done to confirm EXACTLY what was found in the hematoma.  If there is DCIS in it, then the question is how did it get there?  I'm curious to hear what your surgeon says. DCIS is NON-invasive.  So the question is why would it be in the hematoma?  This is really a quagmire.

If I find out anything more, I will post.  I wish you well.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Sep 28, 2012 03:31AM cider8 wrote:

VR, that is really cool you will be meeting with them. I am presently waiting on the oncotype testing and it has been determined that it's not DCIS, but invasive (see my previous posts). I find it interesting that the pathologist thought it was DCIS at first. I mean, he sees this stuff all the time, so I still wonder how peculiar those cells are, in appearance and location. I welcome any question suggestions for when I talk to my doctors. Breast surgeon will be first.

~Paula~ [R] Pure Mucinous, DCIS, & IDC. BMX w/DIEP in NOLA 5/11; 12/11; 9/12. DD AC/T end 9/11. Tamox. 2mm IDC found 9/12 = 33 rads end 01/13, Oncotype 34. [L] IBC = TCx6 end 7/13, MX (remove flap), 44 rads (2x/day) end 10/13. Zoladex & Arimidex. Dx 2/25/2011, IDC, 1cm, Stage IIA, Grade 2, 1/21 nodes, ER+/PR-, HER2- Dx 4/5/2013, IBC, Stage IIIB, ER+/PR+, HER2- Dx 8/22/2013, IBC, Stage IIIC, Grade 3, 10/28 nodes, ER+/PR+, HER2-
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Sep 28, 2012 03:49AM voraciousreader wrote:

Back to the drawing board. I will continue researching. I know you mention it had an invasive component. For now, I would request that a second pathology center look at it as well. I think they need to look at as much of the cells as possible. Last spring I recall that there were some researchers that claimed that depending upon what samples of a tumor they were looking at, might affect the Oncotype score because a tumor isn't homogeneous. What I would be asking your doctor is if this is an iatrogenic occurrence. Not sure if they could determine that or not.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Sep 28, 2012 08:40PM tricianneAust wrote:

Voracious Reader, you sure keep up your world wide contacts. It sounds great news that you will be able to laise with Britta Weigelt, Ph.D. and her colleague Jorge Reis-Filho, Ph.D., when they move to Memorial Sloan Kettering in New York in November! I am sure it will advance mucinous cancer research in the future. Lots of prayers that this will be the result of you all getting your thinking working together. Many blessings Tricianne. PS I am keeping up my prayers for all you MC sisters just to encourage you, you are not individually forgotten. I have a long list of all your website names by my computer so I don't forget to keep you covered.

TricianneAust Dx: 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. Dec 2021 Mgram 11yrs ok.

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