Posted on: Apr 23, 2009 07:43 PM
On April 21st I had a core biopsy and today I was told that I have mucinous carcinoma of the breast. When I investigated on this website, the information given was that this is a rare type of cancer, about 2-3% of all breast cancers and usually occurs in post-menopausal women over the age of 60. I am neither. I am 51 years old, but still menstruate. I have an appointment with a surgeon, but feel as though I am in the state of shock. This "nodule" was found on routine mammogram and I convinced myself that it was nothing.
This may sound odd at my age, but I just recently started to enjoy and like 'these babies'. The thought of losing my breast scares me tremendously, and I have not even considered the thought of this cancer metastasizing. I won't think of that!Log in to post a reply
Posts 841 - 870 (997 total)
Nov 14, 2012 03:32 AM SaraAust wrote:
Andrea, the pathology report that Golden01 is refering to would be done on the tumour that is removed during surgery. Until you have that report they really don't know all the details of the tumour and that is when they will do the oncotype test, if that's available to you, and give you our options of treatment.
Another suggestion for you to do is to wright everything down before seeing your doctor again so you don't forget anything that you need to ask. You may have already thought of that but sometimes everything seems like it's happening too fast and you don't always think clearly. I hope you have someone that will be there with you for the appointment as sometimes it's good to have someone else remember things if there is too much information for you to take in. If the discussion does turn to mastectomy you need to ask if there is a plastic surgeon that they would recommend to you and you would need to speak to them before definitely going ahead.This site is also good to get recommendations of doctors in your area so if you need to you could always start your own topic asking for advice on this.
Nov 16, 2012 03:09 AM stayinhappy wrote:
Did DCIS turn into mucinous carcinoma?
I have just undergone BM after first having a lumpectomy. The lumpectomy revealed a micro metastisis on the sentinel node, and DCIS in addition to the mucinous carcinoma. I refuse to live in fear, so I opted for BM. The mastectomy revealed multiple "patchy areas of DCIS" in the same breast. Largest was 4 mm. Also a good bit of hyperplasia and columnar cell change.
A surgical oncologist said to me that mucinous carcinoma is a form of invasive carcinoma.
I am just wondering if the mucinous stemmed from the DCIS becoming invasive or if there is anyway to know of any relation or connection.
Nov 16, 2012 07:20 AM voraciousreader wrote:
Stayinhappy...you ask a very interesting question regarding the DCIS component. I had a "drop" of intermediate grade non-invasive DCIS located next to my low grade invasive mucinous breast cancer. Because the DCIS was non-invasive and minuscule, my team dismissed it in the overall plan because the invasive mucinous breast cancer trumped it. While I have been told by my team that frequently DCIS is present with mucinous breast cancer, I have never read anything about a connection between the two. Could researchers be ignoring a DCIS component in a mucinous breast cancer when studying mucinous breast cancer because they are more interested in the biology of the mucinous breast cancer? I also wonder about a connection. I sometimes ask myself if there was a connection shouldn't my invasive mucinous breast cancer have been the same or a higher grade than the DCIS? My mucinous breast cancer was low grade while the DCIS was a higher grade. So if the DCIS became invasive doesn't it make sense that the mucinous breast cancer should have been a higher grade?
There is a gal named BEESIE here on the discussion board who is extremely knowledgable about DCIS. We communicate frequently about research. Perhaps you might like to pose the question to her and see what she says and then report back to us. You can PM her. That's B-E-E-S-I-E.
Nov 16, 2012 09:13 AM Golden01 wrote:
Fascinating questions. I also had DCIS around my mucinous tumor. The DCIS had not shown up on mammogram or MRI and seemed to be a surprise at the time of my lumpectomy. I don't recall any information on the grade of the DCIS. You've prompted me to go back and look at those reports. My recollection is the discussion focused on the mucinous carcinoma and because the DCIS was not invasive, other than making decisions about more surgery, I don't remember much else being said about it.
Nov 16, 2012 08:08 PM stayinhappy wrote:
My DCIS was moderate to high grade. Does make me wonder if there is a connection. Regardless, I am relieved to have it all out!!
Nov 17, 2012 12:19 PM Golden01 wrote:
Went back and re-read my original pathology report. My DCIS was Grade 1 while my mucinous tumor was Grade 2. DCIS was multifocal and present on all four "re-excision" margins. The initial margins weren't clean during my lumpectomy and the BS did a "re-excision" during that surgery. Low grade DCIS noted on two margins and low and intermediate on the other two. In otherwords, the DCIS was all around my mucinous tumor. Seems hard to imagine that the mucinous didn't come from the DCIS. Pathology report from my BMX showed "Flat Epithelia Atypia" in both breasts. My BS and MO both indicated they felt this would have developed into cancer down the road amd that my decision to have the BMX was a good one. I already knew that I had made a good decision, no matter what the pathology report showed. Second opinion on my pathology slides showed that I had "mucinous carcinoma, cellular variant" rather than the "hypocellular variant" (or pure).
Nov 19, 2012 08:32 PM TaunTaun8 wrote:
Nearly 2 weeks into my first chemo treatment, and I am doing great!! My biggest complaint is a dry mouth/sore throat. Other than that, I am feeling very well. Surprisingly, my energy level has been up. I had blood work today, and my numbers are all good. I go back on November 29th for my second treatment. Hopefully, I will continue to handle it well.
Nov 20, 2012 10:38 PM tricianneAust wrote:
Hi all my MC sisters. Glad to see some of you can get your heads around your pathology reports. Checking out my pathology report always blows my brain, its 4 pages long and is full of info I don't fully understand anyway here goes the DCIS nuclear morphology is intermediate to focal high grade EIC positive (more than 25% of the area delineated by the infiltrating tumour and intraductal carcinoma of any extent outside of the margin of the infiltrating tumour) DCIS patterns Cribiform, solid/papilary. All margins clear no lymph nodes affected. Mucinous cancer Tumour grade 1 (Bloom & Richardson with Elstons modication) Nuclear grade 2/3 score for tubule formation 2/3 score for mitosis 1/3. So does that make me any wiser? I just describe as DCIS with Mucinous cancer.
I can always learn more through this website. I just like to check in see how you are all going and pray for as many current & ongoing issues as possible, Blessings Tricianne
Nov 21, 2012 06:47 AM voraciousreader wrote:
Tricianne...your pathology mentions that more than 25% of your mucinous tumor contained DCIS of high grade. Your mucinous tumor based on the Bloom Richardson and Elson score totaled a 5 which is the cut off for a low-grade (grade 1) tumor. The most important score in their scale is the mitonic rate. You are a "1" which means the cells in your tumor are dividing very slowly.
Like me, your DCIS was of a higher grade than the mucinous tumor. I STILL don't understand how that part occurs.... When I meet Brita Weigelt, Ph.D., I will ask her.
Nov 23, 2012 07:04 AM, edited Nov 23, 2012 07:05 AM by tricianneAust
Thanks heaps Voracious Reader that does help me knowing how they got the score of 5 which equals the Grade 1Tumour I never quite got my head around that. I certainly don't understand how the DCIS is a higher grade than Mucinous cancer, is it what develops first then the Mucinous cancer? Great to ask Brita Weigelt when you meet her, you are the right person to ask the complicated questions. Oh well my brain is getting old.
I'll stick to knowing a bit about the emotional stages of dealing with cancer, that's more my field.Blessings and prayers for you all Tricianne.
Dec 1, 2012 02:00 PM FeelingtheMagic wrote:
Voracious, I also wonder about the DCIS/ mucinous connection. Seems most/all? of us had DCIS? Tossing in my pathology.. just in case this conversation leads to some discoveries. My DCIS was high grade. Mucinous low grade.
Dec 3, 2012 04:17 AM tricianneAust wrote:
Hi all, I have just had my second anniversary mammogram, the radiologist did an extra very squashy third mammogram (my bosum felt like a slice of bread it was so flattened forward) to get at the rear section of the scar area, the great result is that all is clear. I had a specialist who was relieving the professor (head of the dept) that I usually see, she was very pleasant and chatty and said to her knowledge Mucinous cancer is usually seen in a DCIS tumour. So it will be interesting to see how Voracious Reader's followup works out.
Lots of prayers and blessings Tricianne
Dec 9, 2012 10:24 PM Yawls wrote:
Hi it's me voraciousreader. I took your advice to come to this thread. My path report sounds like yours. Somewhere in my tumor mess DCIS was mentioned. It was not graded and both my MO and my surgeon were not concerned. My margins were clean up to 7mm and after having three wires placed for surgery ( main tumor and two MRI found satellites) the satellites were found to be benign. I ended up with a major chunk being excised from 4:00 to 6:00 on my left breast. I m going with the notion that they got it with surgery, then will again with rads, then hopefully hormonals will keep it from reappearing. My nodes were clear. In the meantime how do you know if it's pure mucinous or mixed. My path report calls it IDC mucinous type. No mention of pure no mention of mixed... My Mo wants me to do chemo because the mucinous type is inconclusive. My mitotic grade is 1. Ki67 is 8%. Tumor grade is 2. We have compromised by doing the oncotype testing. Waiting for Tuesday results. Thoughts?
Dec 9, 2012 10:40 PM voraciousreader wrote:
Yawls...welcome! I am sorry to hear about your diagnosis. First off, I applaud you for doing your exhaustive research. It has already rewarded you! You were smart enough to ask for the Oncotype DX test. If you look at the NCCN guidelines, based on the size of your tumor, you might consider chemo, but it is not explicitly recommended. Furthermore, if the doctor is questioning the pathology's analysis, then I, and I am sure our other mucinous sisters would recommend that you get a second pathologist's opinion. With mucinous breast cancer, the correct pathology report is extremely important to guide treatment.
You also don't mention your age or if you are pre or post menopausal. I was 53 at diagnosis and premenopausal. With my low Oncotype DX score of 15, I was NOT recommended chemo. But because I was highly ER positive, it was recommended that I do ovarian suppression and endocrine therapy. I then chose to do Zometa infusions as well.
Please take your time and try reading as much of this thread as possible. Most of whatever published research on mucinous BC can be found here. I hope the info is helpful to you. Good luck with your appointment. I hope you will come back and keep us posted. I wish you well with your active treatment.
Dec 9, 2012 10:53 PM Yawls wrote:
Wow thanks for the quick reply! I was diagnosed on my 55th birthday! I am technically post menopausal but felt strongly that we needed bloodwork because my yearly checks are always normal, but I still feel those monthly ovary pinches, bloat, etc. will get those results on tues also. I am 100% er positive and 40% progesterone positive. I feel like one massive seething hormone:) will keep you posted.
Dec 10, 2012 07:35 AM Golden01 wrote:
Sorry you are joining this club but know it'a a helpful place. I echo VR's advice on having the second opinion on you pathology slides. I did that but it was down the road a bit from when I was first diagnosed. Since they are sending the slides, one of the National Cancer Institute's designated research centers might be something to consider. I had already gone for a second opinion at the NCI Research Center in my state (a few hours from my home) so had my slides sent there. Here's a link to the NCI list: www.cancer.gov/researchandfund...
Good luck to you! You are clearly good at finding information and the details about your BC
Dec 11, 2012 07:46 PM Yawls wrote:
I had to share my MO report today...no chemo recommended. The oncotype score was 8 and the MO said he definatly thought that chemo would not be called for. I will be doing the five years 2.5 tamoxifen then switch to AIs. Of course with the lumpectomy I will be proceeding with Rads as soon as possible. But to me the news was just what I wanted to hear! Yea!
Dec 11, 2012 08:06 PM voraciousreader wrote:
Yawls.... Glad you have a treatment plan in place that you are comfortable with! Glad to also hear that your MO worked with you and agreed to do the Oncotype DX test. With your case in mind, I wonder if s/he will be requesting for other patients more genomic testing in the future...
I wish you well with your active treatment! Good luck! You have excellent prognostics!
Dec 11, 2012 10:20 PM Golden01 wrote:
Hooray for you! I'm so glad to hear about your Oncotype results and no chemo on your schedule. I'm on the 2.5 years of Tamoxifen and then 2.5 years of AIs. I am working on my bones while I'm on my Tamoxifen to get ready for the AIs.
Dec 14, 2012 10:57 PM Yawls wrote:
Thanks...the relief I feel can hardly be described. I went in for my radiation simulation and was blown away by my RO. He sat down and began by going through my entire case history without a note. He knew everything and congratulated me on my test results. I had no idea that my doctors were keeping in such contact with each other. They are not even in the same practice! It had been two monts since i met with him and was only with him a short time. Except that i really love my DH, i would have married him by the time the appt was over! Anyway, he suggested the tried and true six week course of rads. He said since everything was going so well he wanted to follow a really conservative course. I think he was a little surprised at how compliant I was...I assured him I was willing to do exactly as recommended and that I would continue to be compliant throughout treatment. I'm not sure he believed me, but he did grin and say, "time will tell". He also cut me loose so we could go home for Christmas. Rads start Jan 3rd. I gotta be honest, iam going to pretend that I am whole and healthy and give the worry part of my brain a break!
Dec 18, 2012 06:55 PM tricianneAust wrote:
Thanks Golden01 and Voracious Reader for your encouragement. Yawls if only RO and other Medical practioner's realised that when they know our health situation comprehensively and have a caring knowledgeable attitude our emotional state improves immediately. I am so glad for you that you had that type of RO they are precious. Many Christmas blessings to you all and lots of prayers for a healthier New Year. Tricianne.
Dec 24, 2012 01:35 PM Destina wrote:
I am greatly relieved to find a discussion board that addresses this rare type. I was just diagnosed on Dec 10, met with my surgeon on the 14th and have a lumpectomy + snb scheduled for January 9.
As I know you all know, this diagnosis brings up a range of powerful feelings and thoughts. Plenty of fears, but many fall in the area what's deeper than the diagnosis, if you know what I mean.
As far as the medical end of things, I'm trying to prepare myself for surgery and keeping my hopes up for clean margins and no nodal involvement. I was so happy to read your news, Yawis. Seems I'm about a month behind you in this and I'm hoping for similar news. Radiation and hormonal therapy have been discussed a bit, but will have a much more in depth conversation post-op with my surgeon and oncologist (3 weeks from today, I just realized). I'm 51 and believe myself to be peri-menopausal. I still menstruate regularly, but it's become lighter and lighter. Does anyone know if they do hormonal testing for consideration of which hormonal therapy to pursue? I'd be very surprised if I have 5 more years of menstruation in front of me ( good golly, it's already been 41 years!)
In the meantime, I've done more reading about breast cancer than I ever thought possible. And it is challenging to find a lot on mucinous type, so again, very glad to find this topic specific board. I'm both sorry and grateful that you're all here with me.
I wish you all a peaceful holiday period with plenty of joy to fill your days.
Dec 24, 2012 02:56 PM voraciousreader wrote:
Destina... Sorry to hear about your diagnosis. Regarding endocrine therapy, since you are premenopausal, the gold standard is Tamoxifen. Be aware that until now, it was recommended that you would be offered it for 5 years. However, at a recent distinguished symposium, a new study was presented, and found that 10 years of Tamoxifen was even better. While you are waiting to begin active treatment, you might wish to register at the NCCN website and read the breast cancer treatment guidelines. Make sure you read pages 94-98 where they specifically talk about all of the endocrine therapies. Make sure you read the professionals version and NOT the patients version. It has more info! One more thing worth mentioning.... Once you stop menstruating, there are blood tests to determine if you are in fact menopausal. That should have no baring on your current treatment plan unless you are not a candidate for taking tamoxifen. Also request the Oncotype DX test from your surgeon. its a genetic test that tells you if you would need chemo. Good luck with your surgery and please keep us posted.
Dec 27, 2012 08:59 AM Destina wrote:
Thanks, Voracious Reader, for pointing me to an excellent source. I will talk to my surgeon and onc about the Oncotype DX. This has not been mentioned to me at all, and this was the first I'd heard of it.
I do consider myself fortunate to be receiving treatment at an NCI designated comprehensive cancer center, so I'm a bit surprised this test hadn't been mentioned to me. I'm curious if it's too early (as in pre-surgery) or if its because of the mucinous type.
Jan 5, 2013 12:11 PM Linda-Renee wrote:
Happy New Year to everyone! I have not posted on this board for quite some time, but am back with an interesting dilemna. I was diagnosed in December 2010 with mucinous cancer and had a lumpectomy in early January. I had a Ki67 score of 25 and an oncotype score of 18. No chemo, but whole breast radiation and tamoxifen. On my follow-up visit with my radiation oncologist, she discovered a lump close to the core biopsy site and sent me back to my surgeon, who took it out and confirmed that it was a rucurrence. They switched me to Arimidex and the tumour conference decided against chemo again. My radiation oncologist is extremely vigilent and has decided that since this "slow-growing" cancer does not seem to be behaving according to the rule-book, ordered two MRI's, one last July, which showed a suspicious area (a false alarm) and the second one in early December 2012. Again, when I went for my follow-up with her a couple of days before Christmas, she said she had just received an urgent fax from the MRI radiologist saying that there was something in the other breast and that I had to go in for an MRI-guided biopsy asap. After trying to figure out exactly how they did that exactly (I was imagining a small elf with pointy shoes and ears crouched under the MRI table, taking aim with a very long needle). The actual experience (on Thursday) was much more mundane. Results in 2 weeks. In the meantime, my regular oncologist became concerned that my iron levels were low and because I am post-menopausal, felt that there had to be another explanation so yesterday, I had a gastroscopy where they removed a couple of polyps and took a biopsy to rule out celiac disease (despite the fact that I have no symptoms...). Now I just have to wait, not so bad as I have a large contract that needs finishing before the 21st of January. The reason I am writing is just in case anyone else is experiencing strange things with their mucinous adventure. I am stymied, but in speaking with my surgeon, have decided that if this is indeed a new 'outbreak' I will opt for a double mastectomy. I have read all of the research and found something that said that a small number of cases of MC with high Ki67 and low Oncotype scores do not respond to either Tamoxifen or Arimidex but do respond to chemo and perhaps I fall into this group. Sorry for the long ramble. I don't talk about all of this with my husband because it freaks him out, so I just pretend that evrything is fine, but for the first time since this whole thing started, I am no longer so sure. I always feel that as long as I know what I am faced with, I can deal with anything, and I know I can, but nothing seems to be happening the way I thought it would, which I guess is the ultimate sign that you can never truly turn your back on this monster. I have bought myself a vitamix and a macrobiotic cookbook and am reading about all the things you should do to kill this bugger. I am avoiding meat and eating tons of fruit and vegetables (all organic). I feel great, so have a hard time believing that something nasty is going on - perhaps it's all a mistake! I let you know what the results say and in the meantime, thanks for the shoulders!!!