Mucinous Carcinoma of the breast
Comments
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I'm not going to one that doesn't do them on the premises. I'm not having any problems so the TV ultrasound is just to get a baseline now that I've been on Tamoxifen for awhile so if I need to take a little longer to find a new doctor, I can do that. The gynecologist that I'd seen for many years retired and I have been quite dissatisfied with the changes in the practice. I had decided I would switch to a new doctor but thought I'd get this year's exams and the TV ultrasound out of the way first. What made me walk out of the office was when I went for the ultrasound that I thought the doctor was doing and a very young technician was going to do the exam instead. I did visit with her about her training (2 years) but no additional training in gyn that some technicians have completed. I didn't ask about her work experience but know it couldn't have been much. The practice has a revolving door of very young medical assistants that can't seem to keep track of anything. I have a septate uterus and know from previous ultrasounds that it can be very difficult to get a good view. I don't want someone inexperienced messing around down there. Am making my calls about the new doctor this morning and will keep you posted. Finding good doctors is a big part of this breast cancer journey. You've encouraged me!
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VoraciousReader, Thank you so much for the positive comment. I will keep in mind the baseline transvaginal ultrasound.
KnBsAngel, I hope you continue to do well with your recovery!!
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I'm not familiar with all of the abbreviations for things, yet, so forgive me~ there is so much to learn. I got the pathology report today, and it seems that the mastectomy was definitely the best choice. The tumors I had were too extensive to warrant a lumpectomy, and the pathology report mentions multiple satellite mucinous carcinoma with the same histology and grade as the main carcinoma. The report says that in addition to the primary mucinous carcinoma, and multiple satellite mucinous carcinoma, there were multifocal ductal carcinoma-in-situ, atypical ductal hyperplasia and flat epithelial atypia throughout the breast.
The Sentinel nodes #1and #2 have micro-metastasis of less than 2mm and less than 1mm, respectively. I'll be going in for further axillary lymph node dissection in a couple of weeks. The resection margins were free of tumor, with the closest margin being 0.5 cm.
The clinical stage is IIIB. The pathological stage is T4b, N1mi, MX. I am still learning what all this means. I go to the surgeon's office on Monday to have the drain removed, and I will be having an appointment set up with an oncologist.
I asked the surgeon about whether this is mixed or pure mucinous carcinoma, and he didn't know. It is not mentioned in my report, but it looks to me like this would signify a mixed mucinous carcinoma with the various types referred to. As I'm doing more research, and after I begin a dialogue with the oncologist, I know I will understand all this more and more.
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TaunTaun.... Mixed mucinous breast cancer would not necessarily refer to the variety of pathologies. I had PURE mucinous breast cancer AND DCIS. Pure mucinous BC refers to a tumor that is 90% mucinous. If it is less, then the tumor is mixed mucinous. So, you need to nail down which type you have. Recall from reading this thread, in the literature there have been women with huge mucinous breast cancer tumors and still do well. You are being staged at a Stage III. Still, quite treatable with ER/PR+, HER2- characteristics. While multiple tumors are uncommon, it's not uncommon to see mucinous breast tumors to be over 2cm at diagnosis.
While waiting to see the oncologist, please review the 2012 NCCN professionals version of the breast cancer treatment guidelines. I wish you well.0 -
Taun Taun, Voracious reader always explains things so well. Please know this is a lot to learn. You might look back for post by "Red Sunshine" in this thread. I believe she posted in November about the importance of second look at your actual pathology slides by a center than can make the determination of pure or mucinous. I believe it was in November. She is an MD, a pathologist, and has written a book on her own experiences with breast cancer. Her advice was really important for me as I learned I didn't have the "pure" version as I'd been told (my pathology report didn't indicate one way or the other). Sending good wishes to you!
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DBrooks... I read the Ebony article.
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Hello Again Everyone,
Just a quick update.
Well it seems that i have managed to annoy every doctor in queensland to the point that the Toowoomba Hospital has put me on a waiting list to see the doctor at the Breast surgery clinic. Hopefully that will happen 26th Sept. Had some minor complications in that the right nipple has a discharge now. Doctor said that will go away when i have something done about the cancer. So still living and learning all i can about Mucinous Carcinoma of the Breast.
Regards
Ginia
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Ginia! YOU GO GIRL!!!!!!!! By the time you're finished with those physicians...you will have taught them EVERYTHING that YOU KNOW!!! Hopefully, with all of the information you've learned about mucinous breast cancer, it will make your treatment decision easier. Likewise, with the knowledge you share with the physicians, it will be easier for them to guide their next mucinious breast cancer patient. I wish you well with your active treatment. Please let us know what you decide and how you are doing....
BTW....is the hospital that you are being referred to closer to your home? I recall you were worried about traveling so far away....
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Wow Ginia there are a lot of doctors in Queensland so that is some achievement! Meanwhile lots of prayers for a good outcome for you, I do hope you really get listened to and understood.
I still manage to log in once or twice a week to catch up with you all and to pray for your improved health. Lots of blessings Patricia
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Way to go, Ginia!! Rooting for you! Heck, rooting for all of us. Taun Taun, there is so much to learn. This has been the best spot for me to learn... Voracious's magic fingers have found me so much I needed to know, but wouldn't have found elsewhere.
Prayers and love to all of you. Only one more 'yucky' chemo treatment to go, then 9 months herceptin, but during that I should get my energy and my hair back! Whoot whoot!
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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!0 -
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....
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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.0 -
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!!!!!!!!!!!
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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
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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.0 -
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.
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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.
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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.
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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.
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First post ever--new to site, but one year in with mucinous BC. Dx Sept. 7, '11 during a vacuum-assisted biopsy (If you're given that option--say no. It was awful.) Had radiofrequency ablation during partial mastectomy Fri, Sept. 16, and went back to teaching sixth graders the next Monday... Am now on anastrozole daily... and wonder about those who've been on a similar path. Radiofrequency? Reverse axillary mapping? Haven't heard of others, and wonder how guinea pig it all is. But--as I've said--am new to this site and surely have missed many in-depth conversations and dedicated research from those warriors who've tackled these battles prior... Oncotype was 19. Oncologist suggested no chemo, so had none, nor any radiation.
Thanks for any shared experiences and what the future might hold persisting with anastrozole.
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Skittle... Sorry to hear about your diagnosis. Glad you found us. Regarding radio frequency ablation and ARM, you know they are experimental. Seems you did well with both! Perhaps you might like to share more details as to why they were suggested. You mention your Oncotype score and that you are taking an AI. I am assuming you are post menopausal. The standard of care for ER+ rumored includes endocrine therapy. I can only speak for myself and say I have been doing well with Tamoxifen. There are numerous threads about endocrine therapy. You might also be interested in reading pages 93-98 in the 2012 NCCN (professional version) breast cancer treatment guidelines online. It gives a great review of the literature on endocrine therapy.
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voraciousreader--wow, you are wonderfully well-informed. I must plead ignorance--not even knowing what NCCN is. (National Cancer ??) As for my personal journey... When the mass was discovered during my first mammogram ever, I knew before the biopsy it would be malignant. Four years ago I had become primary care before losing my mother--in agony with bone mets after bc recur... I had been down the path with her--diagnosis, opinions, surgeons, chemo, rads, etc. so knew a little of who was who in our area. I requested and was able to see her surgeon, for whom I have the utmost regard and respect. (My younger daughter had done research in her lab and had only praise for entire staff/cutting-edge research...) When dr determined mucinous/size/etc., she spelled out my options. I literally asked her the cliche what would you do--and she said the rfa and arm... so I did. She chose my oncologist (not my mother's) and I have been doing as told ever since. He is the one who chose anastrozole, not tamoxifen (which is what my mother took.) I am also on major calcium, D3 and magnesium supplements due to leaching of calcium from the ai. I pray that I am being guided correctly by them both. It's of course not a rerun I'd like to see... I wish you well with your experiences, and appreciate your wisdom and info.
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NCCN ... National Comprehensive Cancer Network. It is an alliance of the world's leading cancer centers. Each year they update the cancer treatment guidelines based on the best available evidence. The Standard of Care is based on their guidelines. It is a great resource and serves as a good starting point when one is diagnosed.
Skittle... I am sorry to hear about your beloved mother. As you probably know, cancers vary and as you probably know, you have great prognostics and should do well. I wish you well.0 -
Sweet VR, thank you. And thank you for your directing to the NCCN. Will be doing some research this weekend when time allows. Appreciate your input.
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I recently had a modified, radical mastectomy of my left breast after a diagnosis of mucinous carcinoma. Unfortunately the location of the tumor required removal of the breast. Am five days post op and am covered with blisters under my steri strips which itch constantly. Presently awaiting final pathology report and decision on further treatment. Was so glad to find this site that had more information on this type of cancer than any other.
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Onlyoneleft.. Sorry to hear about your diagnosis. Regarding the blisters, have you spoken to your breast surgeon's staff? I'm wondering if you are having a reaction to the steri-strips?
I'm glad you have found this thread relevant. Please keep us posted on your progress. We are here to learn from one another... Thoughts and prayers to you!0 -
The surgeon noted the blisters when removing my drain and bandage but did not seem concerned. So far, dealing with the blisters has been the worst part of my recovery. Had the same reaction when they did my biopsy but thought it was the tape they put over the steri strip. Now I realize it was the steri strip not the tape. Just hoping they fall off SOON!!!!!!!
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I had a segmental mastectomy last Thursday. Needing help from some of you more informed sisters about the path report. Excerpts below. Due to the fact that the lumpectomy was done after 4 rounds of chemo (T/C) and while on Tamoxifen since May, I am inclined to have both breasts removed. Would love insight and information from some of you as I make this very difficult decision. I note that the positive 1.2mm micrometastasis in the node is ductal carcinoma, not mucinous. That is a larger factor in me making this decision. Many thanks!!
Micinous carcinoma - the tumor described grossly is residual mucinous carcinoma
Nodes: 1.2 mm micrometastasis in the sentinel node (1 of 6 nodes tested) - It is metastatic ductal carcinoma
DCIS .5 mm from the inked medical margin - several foci present; solid type, low-grade.
Tall columnar cell atypia
From section "Microscopic" - In the "left segmental mastectomy", the tumor described grossly is residual mucinous carcinoma. Centrally, aggregates of mucin are mostly devoid of neoplastic cells. Viable tumor cells are mostly around the periphery of this mass. The tumor cells form small and slightly larger cohesive groups with some tubule formation. A small focus of adjacent ductal carcinoma is present adjacent to a suture, indicating the true deep
margin. Stromal fibrosis and scattered foci of columnar atypia are appreciated, which focally involves papilloma. Columnar atypia is 0.5 mm from the inked medial margin. Also appreciated are foci of ductal carcinoma in-situ,
mostly solid type, low grade. DCIS is also 0.5 mm from the inked medial margin. Retraction artifact is present. Definitive lymphovascular invasion is not appreciated. In the "sentinel node #1 and #2", two lymph nodes are
identified microscopically. One of these contains a 1.2 mm maximum diameter metastatic ductal carcinoma. Mucinous features are not identified. This focus is verified by immunoperoxidase stain for pankeratin. The other node is negative for metastatic carcinoma and cytokeratin stain is negative. Three "sentinel node #3 and #4" are examined microscopically and no metastatic carcinoma is identified. Levels and immunoperoxidase stains for cytokeratin are negative. Sections of the "nonsentinel node" show one lymph node with no metastatic carcinoma
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Stayin happy. Regarding Mastectomy or BMX, it is a very personal decision. For some women the decision is made for them because only a mastectomy would "work." While for others, the decision is a difficult one because they can have a lumpectomy or a mastectomy. Considering that mortality rates are similar for both, it really comes down to what kind of future surveillance you are comfortable with. Regarding BMX, that procedure is IMHO an even more difficult decision. Again, for BRCA + sisters and those who would get a better aesthetic, the decision is easier.
There are other threads at bco.org that are devoted to the topic, perhaps you might like to read them and pose your query there.
I wish you well!0
