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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 23, 2009 07:43PM

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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Mar 27, 2018 07:53PM topless wrote:

At the age of 61 I was diagnosed with a < 5cm pure mucinous lesion in my left breast, ER/PR pos and HER neg. I have lived with MS for over 20yrs and have gone though every type of disease modulating drug for MS as they came along. I even did 4 courses of Novantrone, a drug usually used as part of cancer chemotherapy regimes. In other words, I have been suppressing my immune system for a very long time which probably played a big part in my developing cancer as I had no other risk factors.

Anyway, I was told it was a slow growing, non-aggressive type of cancer and the notorious phrase “if you are going to get breast cancer this is the best to have" was repeated by my oncologist and the various nurses involved in my care. I was given further good news that the tumor margins were clear and sentinel nodes were negative. Because I was worn out from chronic MS pain and years of dealing with MS. I didn't feel up to riding 200 miles round trip every day for adjunctive radiation or chemo. I elected to have a BMX and call it good. My oncologist agreed with this, and I went on with my life. Until....

5 1/2 years later a routine MS follow-up brain MRI showed nasty looking lesions in C1 and C2 .Yup, I had stage 4 breast cancer mets in the spine EVEN THOUGH THIS WASN'T SUPPOSED TO HAPPEN with pure mucinous breast cancer. The only symptom I had was worsening back pain over the last few years. No enlarged lymph nodes - nothing. It was also found that I had a solid tumor growing around some large vessels and my esophagus and trachea on the left side. If wasn't for that routine brain MRI we wouldn't have ever caught it - until 3 weeks later when I had a spontaneous right hip fracture and underwent a hip replacement while I was in the midst of radiation to the upper spine and neck. I also had to have procedures to stabilize some ribs. I started letrozole and Xgeva and a year later and my tumor markers have steadily gone down. I know there is no hope for a cure, but at least I'm still around and finding my quality of life OK, not great, but OK. I am waiting for the other shoe to drop because with this advanced disease it surely will. As my radiation oncologist said “cancer is sneaky, anything can happen."






,






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Mar 28, 2018 10:24PM voraciousreader wrote:

topless...thank you so much to returning here and telling us about your journey. i am so sorry to hear about your struggle. Despite pure mucinous usually having a favorable prognosis, we do have other sisters here, that are Stage 4. Not many, but a few. As your physician said....cancer is sneaky....BUT...I think living life is sneaky too! Does any of us have a crystal ball and know what curve balls our lives and our health, or lack of it, will throw at us? I am glad that you are doing ok. My mother-in-law was a very long term MS survivor. Not an easy disease to live with. Like cancer, MS can rob you of living life with certainty. So, if you are ok, that is a very big deal worth celebrating. My DH has a Muscular Dystrophy. We do a lot of celebrating when we finish out a week together...


In a few weeks, I am having a hip replaced. A few weeks ago, I had surgery on my opposite leg to remove a thankfully, benign tumor. Today, I had my annual gyno appointment and my doctor asked if I could TRY to stay out of surgery for a couple of years? I told him I am working on it...all.the.time....but.....as Gilda Ratner once said....it’s always something......and it really IS ALWAYS SOMETHING....


Tomorrow, I am off to the pain management doctor....in two weeks....hip replacement class, pre op testing, followed by, surgical clearance appointment...and then...I get my spankin’ new hip that will hopefully last me a million more miles...


My thoughts and prayers are always with my sisters here....to you, Topless, especially..

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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Mar 29, 2018 05:19PM topless wrote:

Thank you voraciousreader. Becaus I was just beginning to come to terms with stage 4 out of the blue and starting radiation therapy, the hip replacement seemed like no big deal and I had no time to think about it before it was done. I had no PT after I was discharged because I was in no shape for it. I still forget I have a new hip. So good luck, don’t worry much it’s much less painful than I thought it would be. My husband has had both hips replaced and I must say he made it seem like a bigger deal than I found it to be. Men!


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Mar 29, 2018 07:08PM voraciousreader wrote:

topless! Men!


Thanks for the pep talk. I really appreciate it. I haven’t started much thinking about it because I was so involved with getting my other leg fixed...I just returned from the pain doctor. He gave me 6 injections in my backside...I hope the pain will quiet enough so I can get through the busy month ahead....i have a lot of flying to do and my hip gets very angry at me when I am sitting....guess I will just have to make do....I am not too worried about my recovery...despite it being my right side....what worries me is the thought of the DH driving me everywhere for a month ....THATis going to be something....oh 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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Mar 29, 2018 11:17PM - edited Mar 29, 2018 11:40PM by tricianneAust

Well Topless, VoraciousReader & all my other MC sisters it was a case of promises, promises. After my IT issues having trouble logging in got sorted life took off like a rocket. I am involved in an international study investigating early bio-markers indicating a possibility of developing Alzheimers & the possibility of medication counteracting the process. So having been the beneficiary of all the earlier research into bowel & breast MC cancer and currently being very healthy I was motivated in doing what I can to help achieve better treatment for Alzheimers. Once accepted its quite a busy process of memory testing, MRIs, CSFs spinal fluid testing & PET. Its a totally different experience doing all this medical testing having none of the fears that we all experienced with breast cancer. My testing is totally for research and there are no known concerns or family history. So I am very much the observer of the processes. More like a "Mystery Shopper"

The MRI medical attendant was totally task focused & not at all interested in me as a patient. Explanations & information were rushed. Her comment at the end when I complained about how uncomfortable it was experiencing leg cramps while needing to remain totally still was "MRIs are never comfortable." So this Mystery Shopper gave this important, entirely task focused, feedback to the Manager of the Radiotherapy service who ensures me they have sent her for retraining. The CSF spinal tap was at the other end of the continuum. Can you imagine I actually enjoyed it. I anticipated it to be the most difficult of the testing. Instead the staff were fantastic, quite light hearted & fun. The Dr involved described the new anesthetist's practice as "totally flawless" & it was 0/10 on the pain scale. Plus the medical staff sang me songs as the spinal fluid slowly dripped out. If during this 5 year testing I need another CSF I know where I am booking myself in. Again the PET medical attendant was very patient focused & kept me very well informed & very comfortable.

So in the waiting rooms I have had plenty of time to keep you sisters in my thoughts & prayers. I am also involved in a long running "false allegations" court case through my social work & it was a juggle balancing "grandies" minding, legal & medical appointments. So far our case is strongly defending the prosecution's case. It has certainly made me appreciate my good health & high energy levels. Wishing all you sisters improving health. VR recover quickly from your hip operation. More prayers to keep you safe from DHs driving skills. Topless, tessieb1904, Pollifax, Dark13, Yamimar, may you all be blessed from top to toe with all you are dealing with. tessieb1904 I totally agree with you about preferring MC to Alzheimers. Blessings. Appreciate all that Easter brings you.

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. Nov17 Mgram all ok.
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Mar 29, 2018 11:46PM voraciousreader wrote:

tricianne....I applaud you for your participation. I know this is off topic, but my almost 93 year old mom has been participating, since 1976, in the Nurses Health Study.


http://www.nurseshealthstudy.org/


Bless my mom, at her advanced age, she still fills out the annual questionaire by herself...thankfully, my sister, also a nurse, double checks her answers....



Happy holidays to all

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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Mar 30, 2018 07:28PM Lemint wrote:

Feelingthemagic, Thanks so much for your words, its means a lot. I hope DH and you are doing well. I have quite a few doctors appointments coming up so its probably weighing in me.❤

Dx 7/21/2015, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR- Dx 8/18/2015, IDC: Mucinous, Left, Stage IIB, Grade 1, 1/2 nodes, ER+/PR-, HER2+ Chemotherapy 12/2/2015 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 12/2/2015 Perjeta (pertuzumab) Targeted Therapy 12/2/2015 Herceptin (trastuzumab) Radiation Therapy 4/10/2016
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Apr 3, 2018 08:18AM tricianneAust wrote:

Hi All. I think VoraciousReader's Mum is incredible to still be doing that long term Nurses Health study. I just so appreciate my current extremely good health that its good for you all to know that at times there is a bright light at the end of the tunnel and its happy sunshine. Lots of prayers & best wishes 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. Nov17 Mgram all ok.
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Apr 3, 2018 05:59PM voraciousreader wrote:

trish...Heart



Okay sisters.....Next week, VR will be visiting our researcher friends at the rare breast cancer lab at Sloan Kettering...soooooo...



If anyone has any questions regarding mucinous breast cancer, post your questions here or PM me. Please don’t ask clinical questions. Ask pathology questions. If you have read anything interesting but don’t understand, ask. Our researchers are very welcoming and spend hours with me answering questions. Furthermore, the best part of the visit is when they tell me what they are working on, what they have discovered and what they hope to discover....



Please chime in

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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Apr 3, 2018 11:23PM thecargirl wrote:

Hi Voraciousreader,

Thank-you for the hours of research you do for us! I would love to know if the Oncotype test results is really reliable since very few mucinous tumors were used in the trials for their results. I don't see how there can be a blanket result when our kind of cancer is so rare. I would also like to know if it is true that a mucious tumor does not respond well to chemo. I don't know it they will answer these questions but they are questions that I have.

Thank-you

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Apr 3, 2018 11:46PM voraciousreader wrote:

i can answer the first question. While mucinous bc is rare, the OncotypeDX researchers set out to attempt to determine what numerical scores would likely correspond with mucinous bc, despite having fewer mucinous bc samples. However, they were able to look at the genetic samples and outcomes of those patients and came up with a score of 15. With post marketing research, that number has been more closely validated. So, when I was diagnosed in 2010, the Oncotype DX test wasn’t even included in the NCCN guidelines. In 2011 is was first recommended for traditional varieties of ER positive BC. Today, it is widely used for our type as well. Keep in mind that most treatments for mucinous breast cancer have a 2B level of evidence which is lower than the level of evidence for traditional types. That said, despite the level of evidence being 2B, it is encouraging, that with each passing year, the OncotypeDX test is being better validated for mucinous bc.

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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Apr 4, 2018 07:53PM obsolete wrote:

VR, as always, am appreciative for all your knowledge, insight and research shared. And best wishes to your mom, too!

My questions pertain to the pathology with mixed mucinous: 1) If other subtypes of BC are present (IDC, papillary, DCIS, etc) concurrently with MC and if those other subtypes are molecular subtype Luminal A and Luminal B, how would this affect prognosis? 2) If % of MC cells are greater than 50%, would the patient ultimately benefit from having any MC cells be affected by hormonals?


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Apr 15, 2018 12:46AM voraciousreader wrote:

obsolete....first off, the answer to your question is quite simple. Your treatment and prognosis are based on the most aggressive cells, whatever the cells might be. Furthermore, genetic testing will also come into play as well.


Now, if there is opposing info, such as cargirl’s situation, our pathologist friend at MSK said, there is really no best answer with respect to treatment. She then went on to send VR a very interesting study done by some of her colleagues. The study explains that today there are a number of genomic tests that study different breast cancer genes and are all validated and yet might come to different conclusions with respect to risk. The study is called Comparing Breast Cancer Multiparameter Tests in the OPTIMA Prelim Trial : No Test is More Equal Than the Others. So basically, as a study population, you would expect as a group, patients will fall into a very neat line. And yet, you will still have outliers...that is, single patients who will score low risk on one test and high on another. Furthermore, the percentage of patients who fall out of the norm with respect to these genetic tests is equal to the same percentage of patients who pathologists’ tumor grades vary...that is...where one pathologist might grade a tumor as a grade 1while a second pathologist might grade that same tumor as a grade 2. So, while different genetic tests are looking at different genes, different pathologists are seeing different grades. In both cases, there is up to a 30% difference...that is 30% of genetic tests will disagree with respect to the same tumor and 30% of pathology reports will grade differently.


So what does a patient do? There is no correct answer. But thankfully, as our pathologist told me, there are tumor boards to help. Are there arguments? Yes. But luckily not often. She believes the system in the U.S. is a good one where there is great cooperation and understanding. She also likes that in the US there is a great deal of specialization, so everyone is trained well in their own specialty, becoming expert at what they do.


Now, turning to mucinous bc. She agreed with what I have been saying here on this thread for years. Genetic tests are not as strongly validated for mucinous as they are for other types of breast cancer. So, a good pathologist and MO are what is needed when deciding what course of treatment is necessary. While it would be nice if every mucinous patient scored a 15 on the Onoctype DX test which would further validate the test for mucinous bc, unfortunately, there just aren’t enough mucinous cases to make the test that strongly validated. So getting a higher, or perhaps a much lower number shouldn’t stand in the way of making treatment decisions,.,,


Next topic....men and breast cancer. Even rarer than mucinous is for women. And, our researcher called my attention to yet another study about men’s breast cancer. They are working on another important study that lmade the synapsis’ in my head explode (that’s an expression that my son’s father in law uses to describe truly amazing info). Can’t dive into that topic yet, but stay tuned....


And finally, I would be remiss if I didn’t mention that I told all of our researchers how much we appreciated their work. i told them that they are doing noble work and not to get discouraged. I explained even if they study things and things do not prove what it is they want to prove, even those negative findings are as important. I explained knowing what isn’t is as important of what is or what might be.


Sooooo....I will continue to keep them and all of you in my thoughts and prayers as always!


Oh...and I got some great news this week. I saw my MO for my six month check up and I will graduate now to annual visits AND.....I no longer will be taking letrozole. After eight years, 3 years of tamoxifen and 5 years of letrozole, and the first three years taking ovarian suppression, I am finished! Yay! Reading the NCCN 2018 breast cancer treatment guidelines, it seems that for mucinous breast cancer the treatment guidelines have eased since I began treatment back in 2010. I am very comfortable with the decision based on the guidelines. Closely reading the guidelines for tumors between 1 cm and 3 cm, a patient should consider hormonal therapy. Back in 2010 it was recommended. Small difference in the wording, but nonetheless a big difference when it comes to treatment.





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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Apr 15, 2018 10:31AM lala1 wrote:

voraciousreader--My dad's MO friend told me one time that you could have 10 pathologists review a tumor and you'd get 10 different opinions on grade. I thought he was just trying to calm my fears about having a grade 3 tumor. Now that you've been told the same thing, it eases my mind. My tumor was 2.2cm in it's longest dimension but less than 2cm otherwise. My BS says he can't decide if I'm a Stage 1 or 2. My oncotype score was 15 so no chemo or rads. But I had a high Ki-67 which my BS and MO both completely disregarded saying no one pays attention to that anymore, which I'm not sure is true. But then my BCI results came back showing high risk for recurrence but low benefit for continuing Tamoxifen. So basically I think I'm one of those who falls into the muddy area as to treatment. I stopped the Tamoxifen at 5 years based on my MO's recommendation but then say my BS last week who's "thinking" I should continue for another couple of years "or so". I absolutely hate being in this position. I'm a person that needs facts and numbers and percentages so this waffling is killing me. I wonder if there are other tests that could give me a more definitive answer as to continuing Tamoxifen. By the time I left my BS's office he was saying maybe just exercise and eat right and have a 3D mammogram instead of a digital one and maybe do an MRI once a year instead of every 3 years and don't worry about Tamoxifen. What?! Could you muddy my waters any more than they already are?!!

Mentor smooth round high profile memory gel implants 600cc (Left); Allergan 10 Moderate Profile 120cc (Right) ; Oncotype 15 Dx 11/27/2012, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 12/13/2012 Mastectomy: Left Hormonal Therapy 2/1/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/26/2013 Reconstruction (left): Silicone implant Surgery 6/25/2014 Reconstruction (left): Nipple reconstruction Surgery 1/20/2015 Prophylactic ovary removal
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Apr 15, 2018 05:49PM thecargirl wrote:

I am so happy for you to be released back to your life, before all the medications and back to routine mammograms ! Thank-you also for giving us the latest information from the Sloan Kettering rare breast cancer studies. You did not mention the mucinous tumor response to chemo so I assume they do not look at that. Thank-you again.

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Apr 16, 2018 08:38PM - edited Apr 16, 2018 08:49PM by voraciousreader

ok....if any mucinous sisters would be willing to share their tumors with MSK, they would appreciate an opportunity to examine your specimens. Before jumping at this opportunity, please understand that our friends are pathologists. They are NOT clinicians so therefore they cannot give medical treatment opinions. Initially, when they set up their lab, they were not in a position to ask for our specimens. Today, their lab has grown and they are now in a position to examine as many mucinous tumors as possible. What they are doing is trying to answer so many puzzling questions and they can only do that by having as many specimens as possible.


So, if anyone is interested, please PM me and I will give contact info.i hopetoday's sisters and tomorrow's sisters will contact me so we can contribute to their endeavor which is ALL of our endeavor. Let's find a cure for all cancer.



Lala...i get how you feel. I know we would all like to have as best info as possible so we could make a truly informed decision. At the end of the day, we all need to feel that we each made the best decision that we could at the time that we made our decisions. Unfortunately, for some of us the best info that we have sometimes just isn't good enough when we need it. I wonder if a tumor board could still look at your case or perhaps another MO....looking back AND now looking at the 2018 NCCN guidelines, I think I was overtreated.....but.....I will never know, that is until i die from something else....and that stuff your BS said about exercise and diet? my BS gave me that BS too! I read all those obesity and couch potato studies and they drive me nuts. I am slender, eat right and exercise. My sister doesn't and guess who got the breast cancer

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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Apr 16, 2018 08:46PM voraciousreader wrote:

ok...citygal....i didn’t discuss the chemo study with our friends. However, I can guess what they would say....there are so few cases that have less favorable markers that puts chemo on the table, that, the results of those few who do get chemo are NOT statistically significant. We all know about these mucinous chemo studies, but remember the common denominator....2% of all breast cancers are pure mucinous, so getting to statistical significance is damn near impossible....nonetheless, it is intriguing...

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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Apr 17, 2018 08:01PM Bosombuddy101 wrote:

VR,

Sorry I'm late to the party, but I did want to ask the pathologists if mucinous carcinoma is methionine dependent. It's my understanding that some breast cancers are and I can't seem to find anything on mucinous. Diet could play a big role in this regard, and I'm just wondering if I should be avoiding fish and chicken which are high in methionine. Happy

“Trouble that can’t be named, tigers waiting to be tamed” ----Coldplay Dx 7/4/2017, IDC: Mucinous, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/20/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 8/31/2017 Mastectomy: Right; Prophylactic mastectomy: Left
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Apr 17, 2018 10:06PM voraciousreader wrote:

bosom...you are not going to find much to read on mucinous because there is so little research on it.and whatever there is with respect to traditional bc, might night carry over to our type of cancer. I don’t want to discourage you from looking...by all means, do research wherever it leads you....


Diet? I wish you luck on that end! I just keep thinking of my beloved obese sister....eats everything! And I do mean EVERYTHING. Eats out, breakfast, lunch and dinner. The places she eats at, I CRINGE. Her family? All morbidly obese...and who gets the cancer? Slender, athletic me....I am so over diet studies. I am so over biochemistry....


I am going to tell you where I think the mystery of cancer begins and where a treatment and cure are going to come from and it has nothing to do with environmental or dietary issues.....if you go back in this thread and read about our researchers previous meeting with me, you will notice that what fascinates our researchers is that when mucinous cancer is in the breast, it is usually indolent. But when mucinous strikes other parts of the body, it is usually aggressive. What our researchers are focusing on is what kind of signaling is taking place between the cells in the different areas. Furthermore, the way studying cancer has changed in the last decade. Drugs for cancer in one organ are now being used in another. Today, there is more of a collective effort in understanding cancer. There is less emphasis on a location of a cancer and more emphasis on the genomics of the cancer cells regardless of its location.


Sooooooo....when I hear people say...oh diet, exercise, yada yada yada, I just yawn. I don’t think they are integral to the signaling which I think is causing cancer to occur.


And here is some other mind bending news....


Our researchers are excited to study me! It came as quite a shock when they asked to study me. Why? Because I was recently diagnosed with a myxoma tumor in my thigh muscle. Thankfully, it was benign. What made our researchers interested was that myxomas are also very, very, very rare. And guess what? They are filled with mucin. So our researchers were quite fascinated not only because I had two rare tumors, but because they think my body is good at producing mucin tumors. The oncology orthopedist didn’t think there was a connection, but our researchers do think there is a connection and if they can find the place in my genes that causes the mucin to switch on and create an environment for these tumors....well....then they might get closer to finding their holy grail...


Oh....and the last thing that interests them about me is that I was recently diagnosed with ehlers Danlos Syndrome. I didn’t know this but they explained to me that ehlers Danlos which is caused by a defect in a protein thencauses collagen issues. And collagen and mucin are closely related. Soooooo....our researchers have their work cut out for them....



Finally...a few of you have PM’d me and want to share your tumors with our researchers. I emailed them and am waiting for an answer on how to coordinate it. Stay tuned. And thank you all. Hooefully, we will be the ones who will help unlock key information that will one day lead to a cure....now wouldn’t that be something!

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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Apr 18, 2018 04:02PM RiRi11 wrote:

Hi All,

I just received my Surgical Pathology report. They added a comment:

This Mucinous tumor is more cellular than the typical mucinous/colloid and shows focal micropapillary growth pattern.

Does anyone understand that comment?

(I was so relieved with my results of clean margins and negative node, I completely missed that when I was sitting with my doctor this morning..)

Im still waiting on my oncotype and do not meet with the MO for another 3 weeks.

Thank you :)



Dx 3/6/2018, IDC: Mucinous, Right, 3cm, Stage IIA, 0/1 nodes, ER+/PR+, HER2- Surgery 4/5/2018 Lumpectomy: Right Chemotherapy 6/11/2018 Radiation Therapy 9/30/2018
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Apr 18, 2018 09:30PM voraciousreader wrote:

i can’t help interpret your report. I would recommend that you ask your Surgeon to have the pathologists at MSK at our friends rare cancer lab look at your tumor. The reason why I say this is that mucinous is rare and micropapillary combined with mucinous is extremely rare. Furthermore, MSK did a study in 2013 of patients at their center treated for micropapillary and published their results.


http://ascopubs.org/doi/abs/10.1200/jco.2013.31.26_suppl.150


It appears that micropapillary can be aggressive and quite often appear in the nodes. I see from your signature that you are node negative. So, could the mucinous breast cancer have a positive effect on the “micropapillary growth pattern?”


Despite not being as strongly validated for our type of cancer, ask for the OncotypeDX genomic test. That might help get a handle on your treatment. And please register at the NCCN website and read the professional version of the breast cancer treatment guidelines. Look specifically for the area that discusses mucinous and other favorable types.


Keep us posted and good luck

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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Apr 18, 2018 09:39PM - edited Apr 18, 2018 09:46PM by RiRi11

thank you for getting back to me. I am actually being treated at MSK, did my lumpectomy. Should I still ask her to have rare cancer lab take a look (or are they the ones that prepared my report) I appologize if that is a dumb question... 😬

They just sent my forms today for the oncotype, I will be meeting with my MO. on May 14th.


Dx 3/6/2018, IDC: Mucinous, Right, 3cm, Stage IIA, 0/1 nodes, ER+/PR+, HER2- Surgery 4/5/2018 Lumpectomy: Right Chemotherapy 6/11/2018 Radiation Therapy 9/30/2018
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Apr 18, 2018 09:43PM voraciousreader wrote:

it is possible that they sent it to the rare breast cancer lab. But, it is also possible that they didn’t. I would reach out to them and ask if the rare breast cancer lab has seen your specimens. Keep us posted

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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Apr 18, 2018 09:46PM RiRi11 wrote:

i will! Thank you do much for your hel

Dx 3/6/2018, IDC: Mucinous, Right, 3cm, Stage IIA, 0/1 nodes, ER+/PR+, HER2- Surgery 4/5/2018 Lumpectomy: Right Chemotherapy 6/11/2018 Radiation Therapy 9/30/2018
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Apr 18, 2018 09:49PM voraciousreader wrote:

you are welcome. Just want to say tha MSK is a large institution and the “regular” pathologists are the ones who are looking at your specimens. I don’t know what their protocol is once they identify a rare cancer. I don’t know if it is automatically shared with the rar cancer lab. Please let me know if you find out

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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Apr 18, 2018 09:50PM voraciousreader wrote:

https://www.mskcc.org/research-areas/labs/jorge-reis-filho

this is the lab that you want examining your specimens.



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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Apr 23, 2018 10:08AM Bosombuddy101 wrote:

VR,

Your sister sounds like she has a stomach of steel Smile, and I wish her continued good health. Unfortunately for those of us who have been diagnosed with cancer, it's not so easy to continue with the status quo regarding diet or unhealthy habits. Cancer is a wake up call for many and the fact that 1 in 2 people will be diagnosed with cancer in their lifetime --- is frightening. The evidence out there is overwhelmingly in support of a plant based diet and exercise-- this evidence comes from control studies conducted by medical doctors and scientists. I don't know if I can become a complete vegetarian, it's not easy. In the 1950's, the majority of doctors and the American Medical Association (???!) were saying that cigarette smoking was healthy and encouraging people to smoke --why? They were being funded by the tobacco industry. Today it's the pharmaceutical industry that's funding the majority of randomized control studies--studies which are referenced as the new "Gold Standard." I hear the doctors in these studies don't get access to the final data, it's the property of the company conducting the study to massage the data as they please. No wonder people are dying or suffering ill effects from FDA approved drugs. I'm not preaching to anyone mind you, but staring death in the face, we all do what we must to survive.

“Trouble that can’t be named, tigers waiting to be tamed” ----Coldplay Dx 7/4/2017, IDC: Mucinous, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/20/2017 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 8/31/2017 Mastectomy: Right; Prophylactic mastectomy: Left
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Apr 23, 2018 12:56PM voraciousreader wrote:

bosom....I wish you well with your protocol.you certainly won’t get any argument from me with respect to the FDA and Pharma...the DH is in a clinical trial for more than a decade, yep, MORE than a decade, so I am extremely familiar with how both work. You need not look back to the 1950s to see how our government and Pharma are connected in making poor decisions..... I closely followed the AIDS epidemic and how drug approvals were conducted, which ultimately led to the VIOXX scandal. Sometimes the powers that be will get something right and then be blindsighted by something very wrong. However, keeping all of these scandals in mind, I think it is very short sighted to think that if we manipulate our diet and exercise appropriately, we will magically improve our health.


So, how do I arrive at that most uncomfortable conclusion? Let’s begin with the DH and his lovely family. The Holocaust wiped out most of his ancestors on his father’s side. Today, he and his sister share 3 paternal male cousins. If you lined up the five of them, you would be looking at the picture of good health. All of them are over 65, slender, eat well and are exercise junkies. However, peeling back a layer, you would find that ALL OF THEM have had HORRIFIC cardiac issues. ALL OF THEM! The DH has had cardiac bypass surgery, his sister survived an aortic disection and their three cousins have all had bypasses AND valve replacements. All of them have always had normal cholesteral numbers. Now, peel back another layer. My father-in-law and his two sisters, all slender, dropped dead of heart attacks. My father-in-law, the youngest, lived the longest, surviving a heart attack and bypass, but STILL succumbed to heart disease by collapsing to a fatal heart attack. Ditto my own father, at 56, while his sibs lived into their 90s.


I pause and reflect...and then....23 years ago, the DH was diagnosed with an extremely rare metabolic muscular dystrophy. I write this musing from the cafeteria at the Children’s Hospital in Pittsburgh. The DH is having his six month check up in the Medical Genetics department. For a dozen years he is participating in this clinical trial and we fly here every six months. Before Pittsburgh began participating in the trial we would fly to Dallas. Having an orphan disorder has opened our eyes to the development of the extraordinary world of genetics. And, the wonder of metabolism. And, the inside workings of the FDA. And, how research developments make it into the science journals.



.....continue to Part II

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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Apr 23, 2018 01:23PM voraciousreader wrote:

Part II


So....what have I thus far learned....


Genetics and metabolism.....


You can have two people, may they be strangers or twins, and they can both have the same metabolic genetic disorder and have DIFFERENT presentations. Now those same two people, because of the genetic defect, one can have less enzymes and be less affected, while the second individual might have more of the enzymes and be inconceivably, profoundly affected. Why? No one know.


So where am I going? I like the word spectrum. In science nowadays, they are using that word quite often when they describe illnesses and disorders. The word kind of sums things up in the world of medicine. Makes everything fuzzy. That’s what I think science is. Fuzzy. In medicine, everything is fuzzy. People....they are fuzzy. I think it is safe to assume that no two people are alike. And to wave a wand and say one diet, or one lifestyle or one pill is a panacea for living a longer, healthy life...is well......just plain foolish. I think each of us is as unique as all of the stars that cover the sky and yet, I also think we are each prisoners of our infinite genetic equations.....my sister, obesity,the DH heart disease and muscular dystrophy. Me? Ehlers Danlos, breast cancer and who knows what else!


I think the unknowing of what it is we know is what is so frustrating. We would love to believe after we do all of our research, then, and only then, we will know what it is we should be doing. But then, there will ALWAYS be th unknowing if we were right..

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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Apr 24, 2018 04:01PM INFJen wrote:

Hello fellow MC sisters! New here and finally got through the 70 pages of this thread. Grateful for the wealth of info and more grateful for you warriors. I was diagnosed w/ pure MC last December at the age of 36; lumpectomy 1/18, and finished 33 rads last week. Oncotype DX 10. My lump was 2.3 cm and I believe I had been carrying it for several years... maybe even 2 decades? I first discovered a lump in my right breast when I was about 14 yo. Didn't pay much attention to it due to my age at the time and forgot about it until about age 28. By this point the lump was more prominent & I did think it could be cancer but ignored it again and chose to be in denial. I probably would never have gone to see a doctor if it were not for the pain/discomfort I started to experience last year. I stopped being able to even wear a bra and was forced to seek medical attention. So thank God for the pain! My MO is convinced that my lump could not be the same one from middle school but it makes me wonder... considering that MC is generally slow growing and mine extremely slow growing, low grade, etc. Anyhow, I consider myself luckiest of the unlucky and I am trying to get back to some sense of normalcy now.

Btw, I was really surprised by the number of sisters here who were diagnosed w/ MC in their 20's & 30's..

Dx 12/12/2017, IDC/IDC: Mucinous, Right, 2cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 1/12/2018 Lumpectomy: Right

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