Mucinous Carcinoma of the breast
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What a good friend you are to Julie and her family, just as you've supported so many of us her at BCO. Prayers will surround her.
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dear sisters,
thank you very much for your answers. I was very glad to read all your good wishes. Actually I´m still in the hospital, because my new breast is inflamed, but I´m hopeful being back at my family soon. The lump was very big (7 cm) and pure mucinous (tumor cells in lakes of mucin). Effects of the neoadjuvant chemo weren´t recognizable.They found a metastase in 1 of 13 nodes. So I have tomorrow a date with my gym in the hospital, who manages my therapy. Today my case is in the tumor board. I´ll be back soon.
Best greetings
Frieda
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Dear Sphnx: thank you for posting about your Mucinous Carcinoma of the breast. Where did you find the information on this tupe of bc. I live way up north, litterally at the end of the road in my Province in Canada. My doctors are good up here but any information I could give them would really help right now. I am going for a mammo and ultrasound next week, and I am having problems even getting there. So if I could let my Dr. know more about this type of bs and more on pagets. I am hoping they could do a punch biopsy here in the Town I live in and send the results out. That way I won't have to travel more than necessary. Thanks in advance for any info you could link me to. Snowyday
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Frieda... I wish you well! Sending gentle hugs, thoughts and prayers!
Snowyday... Could you be more specific regarding what type of info you need?0 -
Frieda, sending healing thoughts... hope all is improving now.
Taun Taun, good that your chemo is going well. I'm curious, were you diagnosed with mucinous cancer or mixed? I was given chemo because the mucinous was her2+... otherwise I don't think chemo would have been recommended. But then, as we all know, there is no 'normal' with bc. I'm slowly slowly but surely getting hair back. Potentially slower than 'norm' because of herceptin and tamoxifen. But I do love the feel of this soft and getting thicker, if not longer, hair!
Just checking in to celebrate having my exchange operation yesterday, with a little lift for the 'normal' breast. Looking forward to seeing results after swelling goes down. Little perky boobs here we come!
Happy thoughts to all.
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FeelingtheMagic - Congratulations on having a surgery behind you! That is a big step on this journey.
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Hello ladies, I am looking for particular cases: mucinous carcinoma & LVI ; was any of mucinous patients here diagnosed with LVI?
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Havefaith...I'm sorry to hear about your diagnosis at such a young age. You ask about mucinous breast cancer and LVI....I suggest you go back to the beginning of this thread and read all of the posts. I don't recall whether anyone identified themselves as having LVI. However, I do know that there are a few sisters who have had mucinous breast cancer and positive nodes.
Regarding prognostics, I did a little research this morning and found one or two studies in the literature that identify LVI and mucinous breast cancer. But the number of patients are so small that it really doesn't amount to statistical significance. Below, you will find the links.
I just want you to keep in mind that there are many threads here at BCO devoted to LVI. You might wish to read more about LVI which seems to be a very controversial characteristic as it relates to prognostics and predictive markers.
The good news about your tumor is that you are Grade 2 and are node negative. Those are VERY GOOD prognostics ESPECIALLY for someone as young as you are. The majority of tumors found in patients under the age of 35 are usually Grade 3 and node positive.
I hope you are having the OncotypeDX test done on your tumor. That should give you an idea of your risk of future recurrence.
I wish you well and hope you will let us know how you are doing.
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http://informahealthcare.com/doi/abs/10.1080/00313020600699268
http://www.redjournal.org/article/S0360-3016(03)02240-5/abstract
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Hi Voraciousre, thanx alot for the response i was too concerned about my diagnoses , im not based in USA im in the middle east & they dont perform the Oncotype test in here. I went through most threads here & found topics which talk about having LVI positive but none with mucinous type which made me more concerned. I had my 2.8cm lump removed by surgery. My BS said two nodes were tested negative during surgery but pathology report came up with : no metastases were found in 2 lymph nodes one (>0.2mm), few tumer cells were found in one lymph node (<0.2mm) !!! My BS still insisting is not considered positive so they put me in this category(T2N0Mx) what does suppose to mean? </p>
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Havingfaith...For all intents and purposes, you are node negative. May I suggest if you can't have the OncotypeDX test done, ask that a second pathologist review your tumor to confirm the results. You know that the most important thing guiding treatment is having an accurate pathology report and with mucinous being rare, you want to be 100% sure what you're dealing with. Despite having the LVI, I would say you have a good prognosis. Again, aside from being young and having LVI present, your tumor has very good characteristics for your young age.
Stay in touch! We will keep you in our prayers and thoughts!
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Havingfaith . . . Good wishes to you. I echo VR words about having a second opinion on your pathology slides. With a rare type of BC, it can make a difference in what is recommended. Look back on this thread for info from Red Sunshine (I think it was in November 2011) on this topic. I got the second look at my pathology slides and got more info than I had when making my initial treatment decisions. I don't know that it would have changed what was recommended but I find more info helpful. Since the slides are sent, you can pick a cancer research center for the second look.
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Thanks my dear , i changed hospital after lumpectomy surgery so they r repeating the tests. the new CBC came with High Red blood count although it was normal 2 months ago before removing the tumer! Does any one have an idea why ?
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Havefaith....I couldn't say why you had a high red blood count. It is usually symptomatic of something else or perhaps NOTHING....Have they retested you? I think you need to discuss that with your physicians...
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No they didnt, i wont be able to see my oncologyst till 15th of April , hopefully will be nothing
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I know March is almost over and I mentioned earlier that I was meeting with the researcher at Sloan Kettering who studies our type of carcinoma some time in March. Both of us have been busy and we finally selected a date...but it's in late April....
So if anyone has any questions for her and her colleagues....post them here or PM me. So far, I know I need to ask her about the DCIS and grade vs. the grade on the mucinous bc and what's that all about and how does it happen.....
Take your time thinking about questions....and let me know before the last week in April.....
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Hi sisters,
I am only 29 yrs old and I have pure mucinous carcinoma, stage 2B, ER+ PR+ HER2-,
oncotype dx score was 14. My oncologist didn't put me on chemo but hormonal therapy.
I took the lupron injections for a year (4 injections/once in 3 months) already, however my doc wants me to take this for at least 2 years. Here is the issue: I cannot sleep since i took the injection, i have major depression, difficulty to manage my anger, gets irritated so easily, cannot perform well in office and i just resigned, loss of memory, often gets stomachache, and nowadays my arm join seems to be painful, but not severe, I just searched for the side effects and found out people who experienced these symptoms also took the lupron injection. My next apt with doc is 2 months later before i take another injection.
Do u all experience the same thing? I wanna tell my doc to stop this treatment. everyday i sleep around 4am+, i basically cannot do anything. This is driving me insane, i hate it, it has ruined my life!!
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Filing... Welcome to the mucinous carcinoma of the breast thread. I would also like to invite you to the stage 1 grade 1 and premenopausal thread started by annicemd... Even though you are Stage 2. A lot of sisters, including myself, on annicemd's thread are doing Lupron. So I suggest you join us here and there! I promise you will get lots and lots of support. I know how difficult it must be for you. The issue with mucinous breast cancer, especially with a low Oncotype DX score is how aggressive do you need to be. Despite having a 4cm tumor at a young age, you have no node involvement and a low score. Ovarian suppression at a young age is difficult. Perhaps you need to speak with your MO about getting a referral to a physician who can help mitigate your sleeping issue and emotions. The DH has the same issues as you and I can speak for how awful it feels for both of us. But there are ways to help if you really want to continue the ovarian suppression. Over at the stage 1 grade 1 premenopausal thrread we talk about how many choices us we have because our tumors are not aggressive. I think you need to talk about mitigating your frustrating symptoms and know you are not alone. As long as you are patient, you can find a treatment that works for you. I think your priority now should be finding a healthy sleeping pattern. Talk to your doctor as soon as possible.
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voraciousreader, thanks for your invite, can you post the URL Link for that thread? I couldn't find it.
Yes, i had two lumps in right breast actually, both were quite far from each other, one was near my armpit,
the other one was below my nipple. Both were quite big, 4,5cm and 3,9cm.
Yes, i need to meet my MO, I am currently at my hometown, the hospital is oversea coz the hospitals are better there.
It's really tough for me, i lost my r/s with my fiance, lost my job, lost everything...
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http://community.breastcancer.org/topic_post?forum_id=108&id=773534&page=1
Filing...above is Annicemd's link for the thread Stage 1, grade 1 and pre-menopausal. If you do a search... Just type in annicemd and her thread should come up!
Filing...I think one of the most difficult parts of our journey is finding a treatment protocol that works and gives us the fewest side effects. You are definitely not alone and I hope you can take comfort in knowing that! You are very young to be dealing with this disease. The good news about pure mucinous breast cancer is that it is highly treatable. So plan on a very long life and with the proper help along the way... you will hopefully one day soon begin to enjoy life again.0 -
Quick question for the researcher from Sloan Kettering, if I haven't missed the boat:
I had lymph node biopsy with my surgery, and although they didn't find any cancerous cells as such, they did find some small pools of mucus, which nobody has been able to explain satisfactorily to me - does this mean there *had* been tumour cells there at some stage producing mucin, but the pre-surgical tamoxifen had killed them off, or could the mucus have travelled along from the primary and lodged in the lymph node (possibly bringing cancer cells along too)? In other words, am I actually as node-negative as I had been led to believe? Since it seems to be the node status that's our main survival indicator statistic.....
Many thanks. I go read the 32 pages of updates now!
Safe travels, and hi to the new girls.
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Hymil... Meeting is scheduled for later this month. I will put your question on the list.
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Voracious, I have no doubt you will arrive at Sloan Kettering with the most intelligent and pertinent questions! Could you add to your list: Most current recommendations for treatment of pure mucinous with HER2+ (ER+,PR+, too), and I'd appreciate also if they can name the oncologist/s in Canada most informed about mucinous cancer.
I know I'm not alone in how much I appreciate all that you are doing for all of us, Voracious.
To the new sisters here, sorry for your reason for being here, but glad you found this excellent thread.
Heartfelt hugs to all0 -
Feeling....these folks that I am visiting are NOT clinicians, but are researchers. I don't think they know who the "players" are in the field of clinicians, but I will ask. As far as treatments go, again, because they are researchers, they are not involved in treatments. What interests them is the makeup of "rare" breast cancers that they hope can one day lead to better treatments. As you know, there is little research done on "rare" "favorable" breast cancers. But as you can see, especially in your case, our "rare" breast cancer can sometimes present with less than "favorable" characteristics and that is where the challenge lies! Since there is so little research in understanding the make up of our type of breast cancer, they know it is difficult for clinicians to come up with a treatment protocol and that's what keeps them going!
I plan on also bringing up with them cases like yours that are HER 2 POSITIVE. Furthermore, we have CIDER8 who was diagnosed initially with DCIS and pure mucinous breast cancer, then traditional IDC and now has inflammatory breast cancer. I was initially told that if our bodies make one type of breast cancer, the likelihood of a future primary would USUALLY be the same type. I wonder how she could get 4 different types of breast cancer.
I also plan on asking how the DCIS that many of us get that accompanies the mucinous breast cancer has different characterisitics. My drop of DCIS was Grade 2, but my mucinous breast cancer was Grade 1.
Thanks for chiming in with your questions! I hope I can get some answers!
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Hi Voracious. Although your post said 'researcher', my mind was still thinking the doctor who was coming to the states from UK. (don't recall name)
(Just for the record, my dcis was grade 3, mucinous cancer grade 1.)
Thanks again for all you are doing and keeping us informed!0 -
The folks that came from over the pond are doctors... But not medical. They are Ph.D's. I will also mention about your DCIS.
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VR, I'm quite touched that my case interests you so much to take it to the researchers. I'm going to MD Anderson soon for the IBC. I'm really curious to hear what they think about my BC history (as well as current treatment). My MO is treating the IBC as a new primary, but an onc she consulted at Dana Farber thought it was a recurrence and didn't need chemo. No way, I say!
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cider8, sorry to hear all that you are going through... I've seen a few of your posts and truly noticed what an amazing spirit you are. Wishing you all you need to get you through this in the best way with the best outcome. Sincere huge hugs.
Voracious, well, yet another reminder that I've forgotten a lot of details of a large part of last year... not so much chemo brain, I don't think, as heavily benadryled and steroided! Thanks for the clarity.
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Feeling...Don't feel bad! My brain has been in a fog since I gave birth...the first time... and that was more than thirty years ago!
Cider8....If there was EVER a profile in courage on this thread....You are IT!!!! I'm sure you know that there are MANY, MANY sisters who are thinking of you and praying for your full recovery!
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Dear variousreader, dear sisters
it´s a very good feeling reading your posts. I am not alone with my rare disease. On the other side of the earth there are engaged sisters, who have the same tumor like I and collect all informations about it. I am so grateful. You make a better world.
dear VR: I read you bring up to the researchers cases with HER2 positive. My tumor in the breast was Her2 positive and he didn´t become smaller during neoadjuvant chemotherapy and herceptin. In one or 14 nodes was a metastase.
Is this normal for pure mucinous tumors, that they don´t react and become smaller? Is this possible, that herceptin can´t work because of the mucin. And what about the tumor cells in the body? My tumor was 7 cm and I fear, there are tumor cells in the blood. Are the single cells also protect because of the mucins? My doctors only shrug with their shoulders. They don´t know mucinous tumors of the breast who are Her2 positiv.
In the last surgery last month no metastase was detected in lung, liver, head, bones and the rest. I´m now threated with T-DM1.
All my best wishes to you
Frieda
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Frieda... My meeting is scheduled for Friday. I will be sure to bring up your questions as well. I wish you well with your active treatment. Sending my thoughts and prayers for you as well!
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