Mucinous Carcinoma of the breast
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Hi BB, I agree that the BC treatment business empire goes very deep, so it's only prudent for us patients to go deep down into the hidden rabbit holes in researching and in advocating for ourselves. There seems to be no "red line", unless we draw that line for ourselves and not cross that line.
:"Acellular" is supposed to represent no thriving cancer cells, no intact cells and no complete cells, but there probably are grey areas, as in most cases. Your 2 excellent questions are probably best answered by your breast pathologist on a case-by-case basis.
VR, thanks for your many enlightening links and hoping you'll feel better. Hope everyone thrives in 2018 with their choice treatment plans!
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As I am relatively new to this forum, I recently started to read through this thread from the beginning. I was very interested to find someone pose the question as to whether or not you had a history of being a higher mucous producing person prior to Dx? For myself I have always suffered from chronic sinus/allergy issues - every morning I wake up and sneeze and then blow my nose going through at least ten tissues. I have also had an ovarian cyst removed, have endometriosis, mild asthma, and liver cysts (these were once found during an MRI for something non related).
I am curious if there are more of us with these same commonalities? It really is a shame that they is very little information available.
This Thursday, December 21st is my big day where I will meet with the surgeon and receive my results from the core biopsies. So far mucinous carcinoma was Dx in my right breast as a result of aspiration results. The mammogram showed something on the left side so I am anxious to know how that tested. Also, going crazy while waiting to know what the plan will be for me....as I am sure many others are out there feeling the same as me right now or those who are already deep into treatment, etc. May God bless everyone of you and may He hand out lots of courage and strength to all of us!
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tess....sorry you are joining us....especially this time of year....not that any other time of year is better....
Regarding your question, I don't think there has been any research or possible connection with having lots of mucus and being diagnosed with mucinous breast cancer....from a logical point of view....mucinius breast cancer is extremely rare, yet lots of people have allergies that cause mucus and yet few people develop mucinius breast cancer. If there was a connection, then I think mucinous breast cancer would not be rare.
With that said, there are several variationsof mucinous cancer that invades other organs and is usually more aggressive when it stikes other body parts.
With respect to cysts....many people, including myself are very cystic prone. But, the majority of people who grow cysts, do not get cancer. Cysts are very common and for most people, they don't even know they have them, unless they create a problem. Coincidentally, recently, my brother called to ask if I ever had a cyst because he had one in his hand that was bothering him and it needed to be removed. I told him I was surprised at the tender age of 68 that that was the first time in his life that a cycst bothered him. Our sister and I have been plagued with numerous types of cysts in different parts of our bodies. My sister had an infected cyst that landed her in the hospital that needed to be surgically removed and days of IV antibiotics....
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obsolete...thanks! I am ok! The only downside to having Ehlers Danlos is the inability to completely fill out all of my surgeries on medical forms. They leave all this room for what meds one is taking and as an after thought, they leave a little space for surgeries....last week....would you believe, when I was filling out a medical form in a physiatrist’s office, by the time I finished listing all of my orthopedic surgeries, there was no room to list my lumpectomy....my ruptured ectopic and my pneumothorax!...which by the way, the latter is mentioned as a possible complication of EDS!
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Thanks voraciousreader,, I was just curious and you make a good point that this is rare. My grandmother had breast cancer and I recall it was a slow growing type. She had a mastectomy, at the age of 80, and needed no treatments. She had also had uterine cancer when she was in her 60s - there she had a hysterectomy and again no treatments. She lived to be almost 96. I wish now that I knew what type her cancer was. She passed away in 2000 and my mother has dementia and aphasia so I doubt there is a living relative that would know. I have read that the heredity part of breast cancer is actually a small percentage of a person's risk factor. I need more time to continue reading this thread from the early parts so I can learn as much as possible. I have already learnt a lot through reading on this forum, what a great resource all of you BC sisters are!
I have a question regarding the pure and mixed mucinous types, will the core biopsy results tell me which I have or is this only confirmed after the mass is removed and tested? I am starting to make a list of questions for the surgeon for Thursday because I am sure it will be an overwhelming appointment.
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your pathology results should help determine whether you have pure or mixed.
Yes. Hereditary breast cancers comprise a small number. The GREAT news that you describe is that despite having had cancer...your grandmother lived to a very ripe old age. Remember, for many of us, breast cancer will be a very treatable disease....
My mom is almost 93 and has already survived a very rare, favorable lung cancer. She is now dealing with moderate dementia....I feel your pain with respect to your mom....
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That is great news that your mom is a lung cancer survivor! But very sad too with having dementia, it is a horrible disease. This summer my 55 year old sister-in-law was diagnosed with Alzheimer's Disease, after having symptoms for the past 3 years. I have worked in healthcare for 31 years and recognized her symptoms (I work in finance/HR but still have received a great deal of dementia education over the years), yet it took that long to get a confirmed Dx for her. At that time I recall telling my husband that I would rather have a cancer diagnosis than Alzheimer's. I still feel the same way. She has been given approx. 2 years until things peak at their worst, therefore I am grateful for what I have. My mom had a non-cancerous brain tumour removed 20 years ago and now has scar tissue growing on her brain. They believe this is the cause of her dementia and loss of speech. One of my very first thoughts, after being diagnosed, was that I wished I could have my mom as one of my supports because she had always been there for me. Now I will make sure that she is not told a thing about this. She comprehends more than she can express and if she knew, she would be devastated.
Reading so many positive experiences on this forum is very helpful. I thank all of those who share their stories!
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tess...i never told my mom. She had and still has some of her faculties....but I never felt the need or desire to tell her.she is a retired director of nursing and would have taken charge of my treatment. Unfortunately, her medical mindset is based on medicine that was practiced 30 years ago....and medicine has changed quite a bit since then....
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I would like to know how common it is to have acellular mucin pools within a mucinous carcinoma --- does anyone know? I had this on the anterior margin of my tumor, which is the area closest to the skin. I know mucinous carcinoma is rare but how rare is it to have acellular mucin pools within a tumor? Mucinous carcinoma spreads by pools of stromal mucin containing neoplastic cells. For about two or three weeks after my diagnosis before my lumpectomy, I was rubbing frankincense oil on the tumor site and I just came across this study which states:
"One of the main components of frankincense oil is boswellic acid, a component known to have anti-neoplastic properties"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC26647...
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Merry Xmas and a Happy New Year. Hugs and love, A.
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Firstly, I’m so glad to have found this thread, it’s full of information and positive outcomes.
I’ve been recently diagnosed (less than a week ago) with mucinous carcinoma with intermediate DCIS present on two lumps on my left breast. I’m still to have my CT scan and MRI so it’s only early days. Apparently they are both less than 1cm but I think one of them feels bigger than that.
I’m just beginning to assimilate all the information I can find about my diagnosis. Does anyone have any advice on the questions to ask my surgeon on my next appointment? I presume it will all depend on the CT and MRI.
You are all amazing people full of knowledge and strength. All the best!!!
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Yamimar - I am so sorry you have to be joining this forum, I'm sure you must be feeling totally overwhelmed. I know I was, I too was recently diagnosed and joined this forum. I can assure you that here you will find knowledge, comfort and support from some of the most amazing women ever. This forum has been a Godsend for me.
Did you have core biopsies on your lumps and then get your diagnosis? I'm trying to understand where you are at with your next upcoming appointment. Have you already met with the surgeon previously?
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Hi Everyone, All the best for 2018. Sending you all a warm hug from the Caribbean hope you all can feel the squeeze. Lol
Here is au update on my treatment so far.
Started chemo -13 December 2017 Chemotheraphy Begins 4cycles (1 every 14 days) medicine received to take at home Nexium, Kyril, Dexamethasone, Zarzio (5injections)
1st Round of Chemo I got up exercised and went to the Clinic. Met with the patient advisor after speaking with her and voicing my fears I was definitely calmer as she explained everything. Met with the doctor who explained everything again took my vitals and then it was off to the Chemo Chair. The Chemo nurse seemed to be very experienced and was very clear in identifying everything that she was administering.The experience was not as bad as I expected in terms of pain and adverse reaction to the medicine.
It's day 2 and we'll see how it goes today. Again day 2 was not as bad as I expected. I felt nauseous but did not throw up in that regard the meds worked fine. I had to go back to the clinic to be shown how to inject myself. A nother aspect of the treatment. Thank God hubby was there cause I can't inject myself. He did it for the 5 days and it was tolerable. Day 3 I got my meds screwed up and I forgot to take a pill ooooh the pain was excruciating. . Day 4 was a horrible day too but I managed to go thru that in a daze. I was nauseous and feeling the need to vomit all day but I didn't. Had some trouble sleeping though. Day 5 started to feel a lil better all medicine done so its time to get the blood counts back up was able to eat normally. Day 6 thru 14 was feeling more energetic except for day 8/-9 I think a wave of tiredness hit me whew just had to rest completely other than that I was fine. I exercised every other day throughout the cycle.
Noticed that my hair started falling out ever so slightly going to cut it even shorter. I don't stress over the hair I have had my hair short for years right now its full of peroxide caused i deceided to be a blonde its already weak so this falling out is only inevitable. I wear wigs all the time so thats not new to me either. Waiting to see if i'll loose my eyelashes and brows now that is going to be epic.
Lessons learned
1. Pray all the time.
1a. Don't forget to take your pills on time
2. Drink lots of water in the 1st 5 days to flush that chemo liquid out and help your kidneys
3. Exercise as much as you can
4. Try to eat more vegetables and fruit. Drink lots of fruit and vegetable smoothes orr punches as you can.(beet, pumpkin, carrots, kale, cucumbers, lettuce, apple, pawpaw, water melon etc)
5. For some reason milk work really good for my stomach. I can't stand water so i've been drinking grape gatorade
SideNote: After feeling so bad on days 3 and 4 I really decided in my mind that I wanted to stop chemo went and spoke to my Doctor once again he explained why its necessary. So i'm still in the game. I CAN DO THIS!!!!
29th Dec 2017 -2nd Round Chemo Must do a CBC blood test before every round of Chemo.
I got up exercised and went to the Clinic. Got my needle inserted into my port and its off to the chemo chair. Everything ran smoothly. This day its not to bad you feel a bit out of sorts cause after all something foreign is in your body but generally you are able to go about the days business as usual. Today I felt a bid tired after the process. Day 2 not bad this time I made sure to take mynpills on time and to eat small amounts of fruit and yogurt throughout the day. Day 3 is usally my tough day so ill let you know how that went inmy next post.
Thank you all ladies for your repsonses, your encouragement, your good and not so good news it all helps. There are not enouh word to express my gratitude to all of you. WE CAN DO THIS. STAY STRONG. I AM STRONG BECUASE YOU ALL ARE STRONG.
Hugs and kisses.
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Hello, it will take a bit of time to read through all of this thread, but I want to thank you in advance for sharing your journeys here. I too have been diagnosed with mucinous carcinoma of the breast and am still at the stage of saying to myself each morning, "I have breast cancer." This is part of my processing of big things. So yes, I'm glad, if one can be such a thing, it's one of the "better" types but frustrated by the lack of information beyond the type. Currently I am scheduled for a lumpectomy next week and deciding what to say to which people. Happy faces of friends are popping up as the new year begins and I am jealous but reminding myself that I have no more idea of what is going on in their real life than they do about mine. Thanks for sharing,
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Pollifax, thank you for sharing an honest and true perspective as we approach changes in our lives. We are anxious to hear how things go next month for you, and welcome you to our community.
Dark13, wishing you, and everyone else, a love-filled new year.
Yamimar, we too are sorry you joined this club. but happy you found these amazing individuals!
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such a joyful time of year and yet so sad to be encumbered with cancer treatment...i wish all of our sisters well. And as always...i hold all of our sisters close in my thoughts and heart, not only now, but all through the year..,
And polli...you make a point that I often make...i often wonder,when I meet random people through the day, what they might be dealing with...,and I firmly believe with all my heart and strength that, as humans, we are born with the capacity to be resilient and for that...I am so grateful as I am sure others are as well....
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Hello Ladies, first of all, I wish you all the best for this new year, it may be a hard and challenging one for many of us and no matter where you are in your cancer journey I hope you get through it successfully.
Tessieb1904 thank you for your response. I had a core biopsie in 14th Dec, diagnosed 21st Dec, blood test taken that day, CT scan 30th Dec. Next week I’ll have MRI, will see oncologist and then the surgeon to set up the op date and treatment.
I'm waiting for my blood test results as haven't seen the surgeon since my diagnosis.
On another note, I've used the IUD copper coil for years. I've learnt that copper itself increases estrogen levels and that mucinous carcinoma is estrogen dependent. I had too many problems with the coil including contant spotting throughout all the years I had my coil but sticked to it as it was non hormonal and that appealed to me. I’ve finally had it to taken off for good 4 months ago then found my lumps three months later.
Now I'm thinking the copper coil was somehow the cause of this very unusual cancer on me. My dear sister died of a brain tumour two years ago, she was only 43. We are a very big family, I have ten aunties, lots of cosins and there’s no history of either breast or ovarian cancer in my family, not in my grandmothers, my mother, aunties, cousins etc So, other than my sisters brain cancer there’s no cancer history in my family.
Anyone here in the same situation in terms of the the IUD coil?
Thank you for all your support ladies. Best wishes to you all 🙏
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Hi there, just posting an update - my surgery went well - lumpectomy with sentinel node biopsy - and the initial pathology showed clear margins and no lymph involvement. I am lucky. Yesterday I got to see the surgeon again- he drained a lot of fluid from the incision site under my arm. I think it is accumulating again. Does anyone have suggestions for avoiding this fluid build up? I think it might be a bit bothersome to visit every few days so I hope this is a temporary thing and my body will adjust or heal. Otherwise I am just tired. I read a book called How Not to Die by Dr. Michael Greiger and am trying the Forks over Knives meal planner. I did have cheetos yesterday so I don't expect to become fully plant-based but so far I like the way my body feels when I feed it well. Wishing everyone a great Saturday!
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polli...glad the final report was satisfactory and despite fatigue and fluid, you are doing well. Might wish to reach out to your team about how to avoid fluid. I had a few bumps in my recovery as well. My team was there for me every step of the way....
Regarding Forks over knives, I saw a film about the subject and they do make a persuasive case about how we should eat.....that said, I don't think any one diet has been proven to avoid a recurrence, nor one that lets us avoid a cancer diagnosis altogether. How wonderful it would be if a certain diet prevented all of life's illnesses. When it comes to diet, I often tell the story about two of my husband's maternal uncles, one of who was a vegan and the other ate EVERYTHING and smoked two packs of cigarettes. Both passed at the same age....81. The vegen carried his food processor EVERYWHERE he went, while the other carried his cigarettes everywhere he went! Go figure!
That said, I often think of the differences between my sister and me...... My sister is 75 lbs overweight, eats EVERYTHING and does not move her ailing body. A mess. Yet, I, who am not overweight and walks between 3-5 miles on most days, eats most of everything, gets the breast cancer... again...go figure!
I wish you well with your diet and most of all with your recovery..
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Thanks voracious reader, I have a very basic view on life - usually I respond to something challenging with “well that happened. Now what?" Instead of trying to figure out the why. And my second step is usually analyzing things to see what can be done so the mistake or catastrophe is less likely to repeat.
I learned this viewpoint when my husband had acute liver failure. The doctors never found the catalyst. We focused on getting him as healthy as possible in the meantime and luckily his body repaired the bile ducts and he didn't have to get a transplant. He baffled them because he never drank, didn't smoke, do drugs, share needles, or have a tattoo, and had not been to a medically risky country. It just happened to him. And I believe this cancer just happened to me for no specific reason.
I don't expect my diet or whether or not I use a cell phone or color my hair to stop or cause a recurrence, but I do think if I give my body better fuel it might be able to fight back more effectively.
I know folks like the uncles and agree with your point. Hopefully their choices made them happy even if they did finish the race at the same age. The tragedy would be lugging a food processor everywhere and resenting it the whole time. 😊
I will ask the team as I'm pretty sure they won't want to have a standing appointment for draining fluid.
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Yamimar, interesting what you mention about the IUD coil. I did have one in 2011 to 2012. I had endless problems with spotting and my period was every 2 weeks....heavy periods. Where prior, my periods were always on target with no issues. I was then diagnosed with an ovarian cyst. When I had the cyst removed I had the coil removed and had a tubal ligation. I wonder too if there is any connection.
After I last posted here I saw my surgeon on December 28th for my core biopsy results. To my bewilderment I was told the results came back benign. My family doctor had drained some cysts and the aspirate results showed malignant cells and this is where I was diagnosed with colloid cancer. Yesterday I had the large mass removed so now I am waiting for these results. I opted for local anesthetic. During the procedure the surgeon commented on sticky stuff so I wonder if that is the mucinous stuff ? She did say she broke some cysts while trying to remove the mass.
Have you received your blood test results?
I find the other stories on here interesting, as we wonder why we get the BC diagnosis. Like the uncles with two very different lifestyles or voraciousreader with the healthier lifestyle than her sister. Who knows why but I think it is human nature to keep wondering and looking for commonalities. So sorry to hear about your sister passing away at such a very young age from a brain tumour. My Mother had a non-cancerous brain tumour in 1996 and she was fortunate to live till 80 years. She passed away on December 29th now just after Christmas. I do have a lot of cancer on my Mom's side of the family so for me, this was no surprise.
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5752214/
Her-2 positive mucinous carcinoma breast cancer, case report
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Hi everyone. I just wondering if anyone else has mucinious carcinoma BC that is Her2 positive. I had surgery first then chemo (TCHP). I'm reading that mucinious carcinoma is Herceptin resistant which my oncologist never told me. Now I'm worried all over again. Does it affect my progress or prognosis?
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lemint.....feelingthemagic should be stepping in here shortly because she also was HER 2 positive and is doing well.
I think it would be hard to predict because mucinous HER 2 positive is extremely rare. With that said, MOST of us with mucinous DO well. We have to have hope, once we finish treatment that we will do well and ultimately die in our sleep at a very old age....
I want you to know, as most of our mucinous sisters know, by the time i was diagnosed, I had almost died from other illnesses....so...being diagnosed with breast cancer just didn’t have as big of an impact in my life as my other illnesses had had...
Recently, I had another type of rare tumor, in another part of my body, that was thankfully, benign. Believe me, those few weeks from the time the imaging identified it and it was removed and found to be benign were not pretty. Thinking about the possibilites, I lost a lot of nights sleep. Looking back on the episode, I worried, to myself, hey...I survived a rare cancer and here I am with the POSSIBILITY of dying from another rare type of cancer....now that would have been ironic! My point....we just can’t worry about dying from breast cancer, because we can just die from something else! Or.....we can just get back in the saddle and attempt to live our lives to the fullest. I do it everyday not just for myself, but i TRY my best to do it for my loved ones....
Hang in there. It is hard....but we are here for you....
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Thanks voraciousreader, I appreciate your input. Its so scary not able to find others like me. I was first told its was a very treatable but then the her2 positive showed up. Not to say that it's not treatable but it did change things up.
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lemint...it is soooo scary....if you find that your journey is taking a dark detour, head over here. We also have Tricianne, who also is a survivor of multiple cancers, doing her best, praying for all of us! And if all else fails, join a support group. I know it is tough because you might not find someone like yourself, nonetheless, it might help. The DH has a very rare illness and he gets his support from a group online. When he was diagnosed, fewer than 500 people were also diagnosed. Today, newborn screening and adult genetic testing finds more people, so the support group is growing. I get it, lemint....having something very rare is very scary and finding someone like yourself can really be meaninful and perhaps more helpful.
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Thanks again. I'm happy that your recent scare was benign and hope your hubby is doing well. ❤
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Yes Lemint & Voracious Reader & others I have been reading the latest posts and Yes I am still praying for all my MCSisters BUT the latest updates on my home computer have wiped out all my passwords so I haven't replied. I guess you all have these crazy IT issues but I am sure its just a test of our perseverance to stop our brains getting rusty. So I have been reading on my "tablet" and that has never had my password in it. Sooo at last I have found my password & the computer tells me I must update my password so here I am at last. I shall while my minding my nieces 4 year old tomorrow get some Me time in between & reply properly. Meanwhile to bed & get up early for "grandies" duty.
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Hoping & praying that you're all doing well. I'm awfully sorry to hear about each one of your ongoing challenges, so it's good to hang on to hope so our positive intentions will manifest into positive outcomes for all of us.
Lemint, please don't hesitate in seeking 2nd oncology & pathology opinions, even at this stage after having completed some of your treatments.
Is it possible that your pathology slides had also exhibited "mixed" mucinous (including traditional IDC cells which should have had a reasonable response to HER2 Herceptin/Trastuzumab treatment)? With a positive node, this is sometimes the case, which is perhaps a reason why your oncologist had prescribed Herceptin maybe. Just guessing here.... maybe other oncology/pathology opinions may be of some help.
Also had your pathology slides indicated any other more aggressive patterns concurrent with your MC? (For example, micropapillary, papillary, lobular, etc.) This is also sometimes the case with grade 2-3 MC, which is what my MC also had presented. Thinking of you all and wishing the best in 2018.
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Hello Lemint,
Sorry you've had to join our little community, but glad you have found us. It was from this community that I found the resources to be able to speak up on my behalf, and it was this community that helped me know I could speak up!I was diagnosed with Mucinous with HER 2+ six years ago. I had surgery, chemo (listed in my signature), plus 2 years of tamoxifen, 3 years exemestane. I am finally off all meds and doing very well.
At the time I was diagnosed, NCBI information stated that if pathology showed Mucinous plus Her2+, the pathology should be redone because the combination basically did not exist. The pathology was redone in a major cancer center and the results remained the same. Pure mucinous with Her2+.
I doubt that there are any statistics to say mucinous with Her2 is Herceptin resistant. Just not enough cases to create any statistics.
There are studies that report mucinous (with her2-) is resistant to chemo treatments, though. However, I was told that the combination of chemo and herceptin is what supports herceptin's effectiveness and that is why I was given chemo.Because the diagnosis is so rare, don't hesitate to ask lots of questions. A top canadian oncologist was consulted in my case when I kept questioning, and she made the final decision on what kind of chemo protocol. Her choice was less aggressive than what was otherwise being recommended, so I felt my persistant questioning was valuable.
I know it all feels so very scary being given this diagnosis and what feels like a horrible treatment protocol. Please know it was do-able for me. It is really important to tell your doctors and nurses about any and all discomforts - there are so many ways they can help ease side effects, and it's sad how often people don't mention what's really going on because they are trying not to be a pain. The doctors and nurses are there to help you and they can. Just keep talking about what's going on.
Happy to answer any questions, Lemint, if I can. And hope you can take comfort knowing I'm doing well! Sending you a huge hug and love!
And a huge hug and much love to all our sisters here.0
