Mucinous Carcinoma of the breast
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wobbly...It is easy for me to be here, thanks to email notification of updates to this thread.
Thanks for your kind offer! If I get a chance to cross the pond, I would love to meet you! Or, perhaps if you cross the pond, we can meet! I live minutes from JFK airport!
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Hello everyone
My mom was dx in November 2014 and it recurrence in a year with stage IV , she has mammograms every six months on both breasts a nd also with X ray but it dorsn't show any thing wrong till she can found out the the tumer getting bigger then the doctor sent her to MRI . The results show that she get small mets in both of Lungs
the ONco said my mother get a rare case it not approved for triple negative for Mucinous Carcinoma but she she very low of ER + <5% , PR - , and Her-2 (+2 IHC) Now we still waiting for the Fist test. I feel sorry for mom and Dont know what to do next
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Ora...please try not to despair. Once the pathology is confirmed, AND double checked, try to get a second opinion at a teaching hospital and/or have a tumor board make a recommendation. If she is ER - or slightly ER +, there are many good protocols to choose from. That said, there are a handful of Stage IV mucinous breast cancer survivors doing well.
Please let us know how your mom makes out. Take care of yourself too! Your folks must be proud of you for searching the internet and finding us. I'm sure you will find great care!
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Dear voraciousreader,
I'm Orawan's boyfriend from far away (she's in Thailand and I'm in the Netherlands) and I want to thank you so much for your kind and reassuring words. They have really had a big effect on her big worries.
From a distance I am also trying to follow her mom's diagnosis and trying to help out and I wondered if I could ask you some more questions.
I'm very happy that you stated there are several options for the rare case of an ER- and HER2 positive pure mucinous breast cancer. As you recommended, they are currently having the diagnosis double checked through a second opinion, but if it is confirmed, could you maybe state some of the protocols that exist in that case?
The more info she has, the better she can check the oncologists recommended treatment and ask critical questions.
From what we have found so far, it seems that hormone therapy is not an option with ER- (or <5% receptive in her case) and that with HER2 positive the only options are trastuzumab or herceptin.
To us it's pretty unclear weather chemo or radiation still is an (effective) option in that case. Could you offer more insight into this?
Her mom had no metastasis in the lymph nodes, but she does have them in her lungs. It's also still not clear how she got this metastasis from a pure mucinous breast cancer.Finally, could you tell anything about the possible protocols in the case the Fish test comes back negative and her cancer is ER- and HER2 negative?
Thanks so much for your help.
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Jakko, thanks for joining our Community and posing these questions. We just want to make sure that you know we have a lot of expert-reviewed content our site as well. Please check this link as a example Hormonal Status. We are hoping for the best for you all!
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jak.... I can't speak to what protocol might be offered to her except to say that having a tumor board review her case is the best recommendation. That said, teaching hospitals like Johns Hopkins, MD Anderson and Sloan Kettering MAY accept her case via their websites and offer their opinions as well. To begin the process, you need to visit their websites and follow their instructions.
Lastly, please be reassured that no matter where in the world a cancer patient may be, there is SOME PLACE competent to receive care. Cancer symposiums take place annually in many continents and attract clinicians and researchers from around the world!
Keep us posted!
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Thanks for your encouragement and helpful vorarc ,
Today the oncologist ( 2nd opinion ) was send mom's original pathology slides to do Fish test , They want to consider chemo in addition Herceptin so let hope for the best
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ora....sounds great! Looks like the doctors are doing everything they should be doing! 👍
Ora....one more bit of encouragement that I usually don't share....Several years ago, my mother was diagnosed with a lung cancer. Since she was at an advanced age, it was decided that radiation was the way to go. And guess what? Last week, she celebrated her 91st birthday.
Today, many patients with Stage IV diagnoses are living longer than what you might be reading. While it is true that there isn't much research exclusively about mucinous BC, there are still, many effective regimens that control the disease.
One of my favorite sayings is..Where there is life, there is hope.
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Pathology report says lymph node micrometastatic adenocarcinoma involving one lymph ( 1of 1) up to 0.3 mm ( b1) confirmed by cytokeratine AE/AE3 immunohistochemical staining. Does anyone know what this means?
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Roziekat, I'm sorry....do I understand you correctly that this is your 2nd opinion pathology? The pathology is basically stating that a lymph node was found to have a very tiny micromet (size <0.3mm). Adenocarcinoma is sourced from a mucus-secreting gland. Essentially, this pathology is stating there is tiny, tiny micro-invasion beyond the breast tissue. It also described the type of staining the lab used.
You had stated earlier that your lymph node(s) was clean? You indicated your stage "1A" which assumes no lymph node invasion. I think we can assume the "B1" is equivalent to stage "1B", although you may need to clarify this with your pathologist first. (Stage 1B indicates there is a micromet of a certain size in your lymph node.)
This can be awfully confusing for most patients, so it's best not to make any assumptions. Your triple positive status (HER2 +) "sometimes" indicates you "maybe" tend to have a mixed mucinous presentation, but you can ask your pathologist to give you the % of mucinous cells vs conventional IDC cells, which is also important to know, which defines how "mixed" the mucinous cells are. Mixed mucinous is less than 90% mucin. Good luck.
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yes, I had second opinion. This is the (fish) pathology report. Thank you for making it a little more clear. I assume that they still say negative because the node is removed?
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Rozie, below is a link to an explanation of FISH testing
http://www.breastcancer.org/symptoms/testing/types...
As the breastcancer.org article suggested, you would probably wish to ask your pathology department whether more than one pathologist in that lab actually had inspected your pathology.
You could also ask your pathologist if LVI (lymphatic-vascular invasion) was present.
Depending on the size of a met(s) in the lymph node(s), pathologists might not necessarily change the staging (from stage 1 to 2). The fact that one pathologist indicates there was one or more micro-sized met(s) in a lymph node, this means that the lymph node was, in fact, "positive"------ meaning cancer cells had infiltrated the node. (For example, was it mucin cells or conentional IDC cells.) You might wish to ask your pathologist what "subtype" of adeno-carcinoma cells were contained in your lymph node. The term "carcinoma" indicates a cancer ---- in your case, in your lymph node --- thus positive for cancer. Most pathologists would be pleased to discuss your presentation directly with the patient and/or give you a tour of their pathology lab and to answer your questions. The fact that your lymph node is positive (assuming my interpretation of your description) for a micromet is not always a game-changer. Cancer cells could have escaped unnoticed into the bloodstream or lymph fluids and not have survived. This just proves your lymph node, in your case, was doing its job.
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Jakko and Orowan,
I'm sorry to be so late responding, but I was taking a break from bc.org and just saw your messages. I've had metastatic mucinous bc for about six years now and i'm still doing fairly well. My original mets were pleural nodules (also mucinous when biopsied) and it was nearly four years before I had any additional progression, taking only arimidex with very few side effects. Since them I've developed a solitary bone met (mucinous) and a few small liver mets and been treated with faslodex (unsuccessful), xeloda (worked fine but the Hand Foot Syndrome was debilitating), Fluorouracil (hoping to reduce HFS - worked to stabilize cancer, but feet not much better) and now Abraxane (NORMAL tumor markers! but hair loss). Even though it wasn't supposed to metastasize, at least it seems to be slow moving when it does. Life is good.
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carpe....👍😘
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Thanks for your encouragement vorarc and carpe
Today my mom got all of the new results ; mucinous with her2+ ( Fish ) and mets in her lungs become bigger . So she have to working in taxol+ herceptin for 6 cycle and follow by herceptin 12 round .
I do hope that I choose the right choice for mom
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Hello, my wife (she's 47) was diagnosed with mucinous breast cancer, and I'm trying to learn what I can before we meet with our oncologist (next week) and our radiologist oncologist (this Thursday). She had a biopsy but the margins were not clear so they operated again and the second time the margins were clear. Her lymph nodes were negative as well. The tumor was 1.5 cm.
I'm trying to be prepared to ask questions of the next two doctors before we begin treatment. Is there a primer or info that anyone can point me to of what's important? I registered for the NCCN, but I'm not sure where the guidelines are for mucinous cancer treatment are.
From my reading, I wonder about the following: 1. Do we need a second opinion about the pathology of mucinous? If so, why is this important. 2. Do we need to have an MRI to determine if she has any other undiagnosed tumors (she had a sonogram and a mammogram and a 3d mammogram that showed nothing further). 3. Does this diagnosis have any effect on the radiation treatment plan? It sounds like they were talking about a partial breast(?) treatment in our brief initial talk with the doctor.
Are there any questions/topics we need to discuss with the oncologist and radiologist? I know they have ordered Oncotype testing, as the oncologist said if the results were not back by next week we would have to reschedule.
Also, the pathology report reads:
"Mucinous, Colloid Carcinoma" Under this there are bullet points, for histologic grade (2), tumor focality (single), etc, but there is one bullet point under the header that says: "ductal carcinoma in situ: present. Solid nuclear grade, no necrosis" Is this a mixed mucinous sample? Or two types of cancer?
I'd be very appreciative of any help, as this is a overwhelming right now.
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Hi Davidve, I am glad that you have found our website. I am replying to you because I know in the early stages it is great to just get an answer. I am no expert on your wife's diagnosis I will leave voraciousreader to reply as she is very cluey. Apart from the size of the tumour (mine was 2.0cm if I remember properly) the rest of the pathology is very similar and mine was still pure mucinous cancer, which is the best outcome as I understand it. I too was confused with the "ductal carcinoma in situ: present. Solid nuclear grade, no necrosis" pathology part at the beginning but it was not a mixed mucinous sample. I had the same question. I have had a really good outcome from my lumpectomy, radiotherapy and adjunct hormone therapy with Tamoxifen. Its nearly six years ago and all is clear & I am really well. I will certainly pray for you and your wife at this distressing time of diagnosis & planning treatment. Honestly for me it was the most difficult part, later on the op & treatment were for me pretty plain sailing. I was getting onto the website to update all my colleagues on board here with my good news that the specialist advised me yesterday that there is no evidence of endometrial cancer at all even though I had 7 risk factors. The investigation & hysterscopy were well worth the effort to ensure that I was as healthy as we thought. The process was much slower that the breast cancer process so just as well I wasn't overly anxious. Blessings to you all I still keep up to date with all your progress, I do appreciate this website. Tricianne
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david...your wife has INVASIVE mucinous BC along with some NON- invasive breast cancer. Her treatment plan will be based on the INVASIVE component. So, when you go to the NCCN website, look for the breast cancer treatment guidelines. Then, look for the page that specifically discusses Tubular and Mucinous breast cancer. Also look at the last 30 or so pages where they discus endocrine therapy. The footnotes on the earlier pages will be referenced in the last 30 or so pages.
You should ask for a second pathology federal because of mucinous bc's rarity. As for the genetic OncotypeDx test. That should address your wife's tumor and whether or not the benefit of chemo will outweigh it's risks. Furthermore, you might also ask that a tumor board review her case. Because she is young and IF she is premenopausal, ovarian suppression might work better along with an aromatase inhibitor. Instead of tamoxifen. Google the SOFT trial. It will explain further the details regarding premenopausal ENdocrine positive tumors and treatments.
Additional imaging? Let the tumor board decide.
Keep us posted and good luck. Your wife should do well! Very well!
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happy dance Tricianne!
❤👍👍👍👍
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Tricianne,
Thank you for your response! You are right that it is good just to hear from someone who has been through this, with the same diagnosis. I'm glad to hear you are doing well. I told my wife what I've read, and it made her feel better. You are right this is a very tough time, and it is nice to know others are out there. Saying my wife is nervous is a vast understatement when we talk about the radiation treatments after she read about the side-effects, from swallowing problems to potential heart issues, to long term complications, so I'm glad to hear you didn't have those problems.
Voraciousreader,
Thank you very much! Wow, everything you wrote was very helpful. That part of the pathology report had me confused. I really appreciate that. Things seem to be moving very fast, and I want to say I've been working my way though this thread, and you are extremely helpful and knowledgeable. I'm not aware of the tumor board. I will ask her oncologist about that. I will read the sections on endocrine therapy.
Again, thanks again for the advice and good thoughts!
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david....my tablet is giving me problems and I just read what I previously wrote and am relieved that with all of the typos, you still understood what I was communicating.
I am happy that your wife is feeling emotionally better. Once she has a treatment plan in place, she should feel even better. Her journey is just starting and I promise, she will, one day soon,move along in life. These last few years for me have been beautiful. These years might still have been beautiful without Cancer's visit, but beautiful just the same. I am blessed.
I wish both of you well.
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Thanks voraciousreader I am certainly doing a happy dance & singing a grateful song.
Reading all the things that could happen with radiotherapy is pretty scary stuff, be reassured for many of us what you read about and what you actually experience is different. Radiotherapy for me was quite easy. I don't know if it was because the oncologist insisted that I drink plenty of water each day and walk for an hour afterwards, his theory was that it helped the body cope with the "nuclear onslaught". I continually used the cream they gave me to reduce sensitivity and I didn't even get the sunburn redness that some people do get even though I have English skin which apparently burns easier. I have not had one side effect afterwards. I was very blessed as the hospital where I got my radiation is only a 20 minute drive away and the parking was easy so that all helped. I had my treatments as early in the day as possible so I could get on with the rest of my life for the rest of the day and still managed to work my normal hours as it suited me to stay busy. Some of the patients I was treated with preferred to take the five weeks off work and some of them needed to as they got really tired.
The lumpectomy was very straightforward and again I had no complications & no side effects. The scar is barely visible now. If I had to do it all again tomorrow I would have no hesitation in doing it if this was required. Will keep an eye out for your updates & continue the prayer support I found that very helpful myself.
Blessings Tricianne
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I'd like to ask a question of y'all here.....I'm a BC survivor but not this type. However I have a friend who has this type of BC. She had a double mastectomy in Nov and had no chemo or rads and declined HT. She just had her first followup with her MO since her surgery (!). He did a breast exam and told her he didn't need to see her again! Is this normal? No blood was pulled. Just a breast exam. Is it because she's not on Tamoxifen or an AI? I didn't have to have chemo or rads but I'm on Tamoxifen. I see my MO once a year and my BS once a year. They've said they'll continue to see me until....whenever. I just want to make sure her docs aren't letting her fall thru the cracks. Advice would be appreciated. TIA.
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lala....for many of us with mucinous, as I have been told by my MO, it is wise to do endocrine therapy so as to not only avoid a local recurrence or perhaps a distant recurrence, but to avoid a second breast cancer. If your friend chooses not to do endocrine therapy, it seems to me, that there is little reason to be followed by an MO. My MO doesn't do labs. He does a breast exam, asks about side effects, confirms that I see my gyn and radiologist, sends my script off into the clouds and shows me out of his office to make my next appointment.
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Thanks voraciousreader! I figured it was probably because she wasn't on Tamoxifen. I'm trying to convince her to get on it. She's in her late 40s and would really benefit. She a therapist and is deathly afraid that Tamoxifen will mess with her memory.I'm on it and doing very well so I don't know why she has this idea in her head that she'll be unable to form a sentence! Got any really motivating statistics that will help me convince her?
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http://www.medscape.com/viewarticle/864445
Above is a link that discusses outcomes. If the link doesn't work, you can look for The New England Journal of medicine's recent article that discusses extending endocrine therapy to avoid a new breast cancer. That said, to see the highest benefit, one would have to complete 5 years of treatment PLUS another five years. And, the number of patients who benefit afterwards is rather small.
Instead of telling your friend about the statistics, I would suggest to her that her case be presented to a tumor board AND i would ask her to talk to a physician whose opinion she respects. You can also tell her that I am doing well on endocrine therapy. No thought or memory issues for me! 👍❤ Not sure there is much more you can say....
Good luck! I would love having you for a friend.
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If you have breast cancer, I'm the friend to have!!
Between the friend with mucinous carcinoma (which I hadn't heard of) to the friend with HER+ BC that had to do neoadjuvant chemo (which I didn't know could be done as I did not have chemo) and just had lumpectomy (which I didn't know much about) and is about to do rads (which I did not do) I feel like I know an awful lot about BC!! There is me and 2 friends with BC and we've all got 3 different types. I love, love, love to research so everyone just asks me when they have a problem. I just want this one friend to do Tamoxifen. I'll look at that link and do further research and see if I can't make that happen. But one further question....my BS said to me when I was diagnosed that I would do some type of endocrine therapy which would infer a 50%-60% reduction in my risk of recurrence. I told my friend that but she said her doctor told her those numbers don't apply to mucinous carcinoma and that the benefit is much less. That's why she declined. Do you know if it makes a difference what type of BC you have?
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l....let's discuss the answers a little closer. First, when discussing perentages,we have to be specific. Risk reduction can be discussed in relative or absolute terms. A relative risk reduction of 50% may sound like a lot but if only 2 women out of 100 have mucinous breast cancer and for those 2 women, the chance of revisiting the disease is a relative risk of 10% , then the absolute benefit is quite small AND, what little benefit there is, it doesn't appear for many years further out in time.
That said, I'm had the OncotypeDX test done on my tumor and with my score of 15, I'm was told that with endocrine therapy, at 5 years, m risk was reduced by 10%. At 6 years out, I'm had the BCI test, and was told I'm had a 2% chance of revisiting this disease within the next 4 years if I discontinue treatment and only a 1% chance of revisiting the disease if I'm continue treatment. While my relative risk has been reduced 50%, the absolute risk is between 1 and 2 percent based on IMG immmm continue therapy.
Now with that all said, the question remains, how much benefit will I have continuing therapy with the hope of reducing my chance of getting a new breast cancer? No one knows. I'm am continuing with taking the med for now. But, I do wonder if I'm am being over treated.
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Ok.... I see where you're going with this. But how about this....I also had an Oncotype score of 15 which gave me a recurrence percentage of 9%. My question would then be "How much is my risk of recurrence WITHOUT Tamoxifen?" Is it the usual 1 in 8 that I sometimes read in the literature or does that apply only to women who have not had BC at all. I've also seen the number thrown about that 1/3 to 1/4 of BC survivors will have a recurrence. Are those the numbers they are speaking of when saying Tamoxifen will cut your risk in half? I've been on it for almost 4 years. I had a hysterectomy over a year ago and my MO talks about going on an AI. But my BS says the risks and SEs from AIs don't justify swapping since I do so well on Tamoxifen. I have a family history of heart trouble (sister dies from heart attack at 39) and he thinks the AIs are worse for your heart. But all the research talks about how much better an AI is than Tamoxifen. Where's the research that compares 10 years of Tamoxifen to 10 years of an AI or 5 years Tamoxifen + 5 years of an AI?!
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l....I, too, had a 15 score. We will probably have more definitive info in a few more years. That is why I said you shouldn't discuss stats with her. We are all unique with our own circumstances. I can only speak to your original question and please remember that some patients need to see way more solid evidence than others. And as you know, the current evidence, especially for those who have mucinous or Tubular, is just not as robust as it is for the traditional garden type of BC.
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