Posted on: Apr 23, 2009 07:43PM
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 2401 - 2430 (2,444 total)
Jan 10, 2021 08:59PM Rain88 wrote:
Thank you, Tricianne. I too started on 20mg, but the SEs were so bad, I had to ask my MO to prescribe something to get some sleep and to ease the pins & needles in my limbs, among other things. He suggested to go on 10 mg instead. I am fine with this decision, since I clearly couldn't continue on a higher dose and changing to another med would have most likely brought its own set of SEs. There are quite a few others on 10 mg on the boards for hormonal therapy, but I would like to hear from somebody else with MC. (Plus, the only studies I could find about a lower dose of Tamoxifen were for DCIS.)
Regarding the pandemic, here, in Canada, Ontario, a week ago we went in lock down, with only essentials going and the school on virtual. I understand things are much better in Australia.
Thank you again and Happy 10 Years of NED!
Jan 16, 2021 09:14AM voraciousreader wrote:
i sent you a private message per your request.
Jan 16, 2021 10:38AM Rain88 wrote:
Mucinous, my biopsy report read "Invasive ductal carcinoma with mucinous features" and it was later corroborated by my path report "Invasive Mucinous Carcinoma". You will find A LOT of information on MC on this thread alone. (I recently went again over some studies posted here by Obsolete and Voracious.) I am sorry you had to join us. I wish you all the best with your treatment.
Jan 16, 2021 11:46AM - edited Jan 16, 2021 11:47AM by voraciousreader
rain...and for future readers who make it here.
There is NO standard on how pathologists describe mucinous bc. So, you will most often not see the words "pure" or "mixed" in the report.
That said, don't you think they should because that is the question most often asked by patients once they understand mucinous bc?
However, today, what is singularly more important is the er/pr HER2 status and whether or not nodes are affected. Also, genomic testing and menopausal status.
Jan 16, 2021 02:05PM Rain88 wrote:
Voracious, I couln't agree more! This was my very first question I asked my MO.(I knew that the distinction between pure and mixed ALWAYS came up in MC studies!) The doc's reply was that it was pure when no other type was mentioned and that even if it were mixed, it wouln' have changed the course of treatment in my case. I still wish they included Pure in the Dx, though. I am actually wondering if any of us, ladies with MC, have the word Pure or Mixed on their path report... I most certainly don't understand why they wouldn't "bother" to make the mention, since they are distinct enough types.
Jan 16, 2021 02:24PM - edited Jan 16, 2021 02:39PM by voraciousreader
rain...what i was told by the rare breast cancer researchers at MSK is....depending where and by whom pathologists are taught, will affect how they report their findings. One researcher told me that descriptions are all over the place. She told me that one particular group of pathologists could be identified by their "flowery" descriptions.
You would think there was just one standard that they could go by...
Furthermore, to make matters even worse....reports on Fridays contain more errors than earlier in the week AND specimens that are collected before the weekend, but are not read before Monday, may also be compromised.
One of the DH's doctors said...Monday morning is the best day to take specimens. Fewest chances of errors....Til today, I never do labs on Fridays....
Jan 16, 2021 02:28PM Rain88 wrote:
... and yes, you're absolutely right about the importance of HER2, status, node involvement, genomic tests and whether we are or not at menopause. Due to my nodal status and no overexpression of Her2, I felt confortable only with lumpectomy, rads and Tamoxifen. (I also have a theory that my tumor might have in part developped due to the HRT I did. I was lucky enough to be able to feel it and mention it during the mamography. Otherwise, with the density of my breasts they might've missed it. Well, now it's all water under the bridge.) Sending you my best!
Jan 16, 2021 02:33PM Rain88 wrote:
Voracious, really?! I will most likelly avoid having tests done on Friday as well... Who would've thought?!
Jan 16, 2021 06:39PM Mucinous wrote:
thank you for your reply ladies. Rain88, my original core needle biopsy report says “mucinous BC” and my pathology after lumpectomy was “IDC with focal mucinous features “ I’m ERPR+, HER-, 2.1 cm lump, oncotype 22. Had chemo & radiation 21 sessions. I hope mine is pure. But I don’t know how to contact the pathologist who interpreted it since it’s been a year. The surgeon who did it told me its IDC & didn’t elaborate more. I just pray it will not metastasize.
Jan 16, 2021 07:05PM voraciousreader wrote:
Your specimen slides are being kept for many years. You can contact your MO and ask them. If they don't know, then ask them to contact the pathologist OR you can contact the pathologist directly and ask.
That said, you should do well. Mucinous is usually very, very treatable. Because you are young, you were aggressively treated.
As the years fly by, enjoy them! Don't let the cancer cause fear. Fear not! Carpe Diem.
Jan 16, 2021 08:51PM obsolete wrote:
Hello Mucinous, welcome to the MC thread. I'm sorry, but IDC with mucinous features is not the same as conventional IDC (which is 100% conventional cells).
If your Mucinous tumor presents with more than 10% conventional IDC cells, then many pathologists are trained to classify your pathology as "IDC with mucinous features". Please pin your doctor down :) Please advocate for yourselves. Please insist that your pathologist advise you of the percentage of conventional IDC cells, if mixed variant of MC.
For example, my MC was Mixed Mucinous and 2 pathologists described it as "IDC with mucinous features" because it was mixed with conventional IDC cells (15-20%). And here I am 7 years later feeling fine, and I was not treated aggressively.
You will do well, as your sisters already said, and I wish the same for everybody here in 2021. Hugs to all!
Jan 16, 2021 09:18PM voraciousreader wrote:
A pathology primer of mucinous bc
Feb 11, 2021 10:10AM historygeek wrote:
Yesterday I was diagnosed with invasive mucinous carcinoma, moderately differentiated, grade 2. I do not have Her-2 or oncogene yet. I am 42.
I am grateful this thread was put together so I'm not off in google world. Is there anything specific I should be asking the doc when I see them in regards to this rare type?
Feb 11, 2021 06:27PM Rain88 wrote:
Hi Megnc, I hope you're doing well after just finding out about your dx. It is never easy to learn you have breast cancer, so I hope you are not alone at this difficult time. Here, on this forum, we try to support one another and draw strength and wisdom from all our experiences and knowledge. I hope you will find it as helpful as I have. Mucinous cancer is indeed a more favorable type, with a lower chance of recurrence and spreading to other parts. Generally, there are a few factors that drive the treatment. One of them is the size of the tumour, but not so much with mucinous. As well, in the vast majority of Mucinous cases, the Her2 is negativ, so there is no need for targeted therapies. The other factors are the nodal status and margins after surgery, as well as if the cancer is either Pure Mucinous or Mixed with another types of cancer. (Many path reports don't mention the distinction. I was advised to insist and find out if it was pure or mucinous, as they have somewhat different prognosis and often different treatment.) Given your age, you might want to discuss ovary function that is if it is neccessary to supress your ovaries.
You can see my stats below. I was 48 at dignosis. My active treatment was lumpectomy and 15+4 radiation sessions. I am now on Tamoxifen. Like with any kind of cancer, it is important not to over- or undertreat it. I believe we are our best advocats, so we need to educate ourselves and help make the best decisions regarding our treatment.
Good luck and lots of hugs!
Feb 13, 2021 03:38PM historygeek wrote:
Thank you Rain for such a detailed response! It really gave me a clearer understanding of our rare type.
Your info really helped me formulate my list for the doc next week. My first appointment will be with the surgeon. I have heard wonderful things about the surgeon so far.
Feb 13, 2021 04:52PM - edited Feb 13, 2021 04:53PM by Rain88
It really helps to have a good medical team. I was lucky to get an excellent BS and a wonderful NP from the get go. (But to tell you the truth, when I sat down with the nurse the first time around, she might as well have spoken Greek for all I could grasp.) Once you have a date for the surgery, everything will fall in place. If you will have lumpectomy, recovery is not that bad. I found it harder to wait for the path report! Radiation therapy was also easy to do and the staff was very kind and tactful. Best of luck and lots of positive vibes!
Mar 15, 2021 01:02AM - edited Mar 15, 2021 01:23AM by obsolete
4 main BC molecular phenotypes:
Mar 15, 2021 04:43PM Rain88 wrote:
Thank you Obsolete for the articles. I'm especially glad because I haven't found any new studies on the subject lately. It is amazing that there are so many subtypes within a type of breast cancer that is considered rare! I hope the path reports will be more specific from now on. (Mine, for example, makes no reference to pure/mixed or Luminal A/B. I had to be quite insistent to get my MO to look into it. First time when I asked him, he didn't seem to know what I was refering to. I need to make a note to ask him how many patients with mucinous has he treated so far.)
I hope you are well. The spring looks promising in Canada.
Mar 16, 2021 09:54PM obsolete wrote:
Greetings Rain, hope you've been hanging in there. I ran across these interesting comments with a slightly different twist. Apparently it's part of our advocacy to help educate our MO's who are the least bit interested. I've found BC Pathologists to be far more helpful in our MC dx details.
"Up to 20% of lesions can be occult on mammography"
"Because of different patterns of mammogram and ultrasound, both should be performed in all cases of MCB and in some equivocal cases breast MRI is of great value.,"
"PET/CT may help to differentiate pure from mixed mucinous carcinoma and to evaluate the aggressiveness of the tumor."
"Histologically it is divided into two broad types:
I'm staying positive, even if I have mixed type B. Happy Spring and hugs for the best of health! 🙏😊
Mar 18, 2021 06:41PM Rain88 wrote:
Thank you, Obsolete.
Mar 19, 2021 12:40PM historygeek wrote:
I found out yesterday that the area they need to remove is too large for a lumpectomy. I'm meeting with a new surgeon Monday to get the prospects of doing reconstruction at the time of MX.
Mar 19, 2021 04:27PM Rain88 wrote:
Hi historygeek. I had lumpectomy to remove my tumor, so I don't have anything to offer about MX, but if you have any questions or would like to hear from others who underwent MX, you might want to start your own thread. This community is very helpful and I am sure they will provide support and insight. I'll be thinking of you. Best of luck with your treatment!
Mar 20, 2021 03:00AM obsolete wrote:
Looking back, I'm especially grateful that a bilateral mastectomy (following LXi & poor margins) had been required to remove small occult mucinous tumors. This occult MC had not shown on imaging for pre-screening. (See MC Anderson study posted below) I had found my BMX easier than my lumpectomy, so please let us know how your surgery goes. Wishing you the best & hugs for healing!
Mar 20, 2021 03:11AM obsolete wrote:"Mucinous Breast Cancer Should Not Be Undertreated"
"While mucinous breast cancer is thought to be a disease with a favorable prognosis, our study is the first to identify it as one associated with significant multifocal presentation, which is a potentially unfavorable aspect," he said.
"On initial examination, only 10% of these women had a multicentric/multifocal presentation. However, a detailed pathology review revealed a 38% rate of multicentric/multifocal disease after resection, which surprised the team, Dr. Perkins explained."
32nd Annual San Antonio Breast Cancer Symposium (SABCS): Abstract 4117.
Mar 22, 2021 04:55AM bubbles17 wrote:
It’s been a while since I’ve posted but I always try to keep up with this thread as it’s always a wealth of wonderful info.
So anyway, after 4 years of Arimidex and Zoladex, I’m looking to come off these medications at 35 years old to have a second child. I’m a bit concerned about the risk of doing so because my cancer was detected the first time when I was 31, 17 months after my first child was born and when I was still breastfeeding her so I do consider it could have been associated with the pregnancy.
just wondering has anyone here with ER+ mucinous successfully had another child after cancer without a recurrence? Thanks