Mucinous Carcinoma of the breast
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!
Mykidsmom Member Posts: 448
Peggy - A very close friend of mine was about your age and pre-menopausal two years ago when she was also dx'd w/ the same type of bc. She is doing fine today. She tells me that it is a very slow growing and generally relatively stable type of bc. She felt fortunate that she had that type. She also did not lose her breast, she had a lumpectomy. I hope this helps a little. I know all this is quite hard to deal w/ at first. Gentle hugs going your way my dear. - Jean0
csss31399 Member Posts: 1
My mom (57yo) was diagnosed with this on March 30. She is having a lumpectomy next Thursday to remove some more tissue since they didn't get clear margins with the first biopsy. They are also doing a sentinel node biopsy to check the lymphnodes. I have done a ton of research this month on mucinous carcinoma. I am calling it the best of the worst. They also called my mom's a "nodule". She was in shock just as you are as it doesn't usually appear cancerous on a mammogram. I am sorry you are having to deal with this. Keep in touch. Your stories sound very similar. Hugs & Prayers!0
Sphynx Member Posts: 17
For being so rare, I just ran into two posts. I'll repeat what I put on the other.
I had invasive mucinous carcinoma. It is rare and this board doesn't even have an option to input it as one of the types. I'm a six year survivor and I've been around bc.org for most of those 6 years. There are actually many of us that have that diagnosis. I quit keeping track of the names many years ago. You read and hear that it has the best prognosis. Mine was invasive and grade 3 so I had surgeries, chemo and radiation.
PA - I was also pre-menopausal, diagnosed at 49.0
Chunkies Member Posts: 5
Peggy - I've been trolling these forums for awhile but I haven't felt the need to post until I saw your thread. I had a hard time finding information about mucinous tumors as well but google has been good to me.
I was 28 when I was diagnosed and I had two surgeries - biopsy and reexcision with sentinel node biopsy. I also read that this type of cancer is slow growing (1/3 the growth rate of regular IDC) and doesn't tend to spread but they did find a few cancer cells in one lymph node. Part of the problem was that the tumor appeared normal on an ultrasound a year before my diagnosis and given my age, my doctors though the mass was benign.
Right now I am in the midst of chemo (round 3/4 coming up tomorrow.) Once that is done, I'll move onto radiation. I have my fingers crossed that all will be well. If you have any questions, contact me. I've done a ton of reading. *hugs*0
saraand45 Member Posts: 5
I was 45 last July when I was diagnosed with Mucinous Carcinoma. I am always trolling to find more info on this type. Maybe there should be a forum for rare types of a BC, because there are a few types and I am sure alot of women like me are looking for more info and to connect with others with our same type of BC.
Agree, I had a pure mucinous colloid and when I just registered, that was not one of the choices. Shame on breast. org...
Peggy, my tumor was 5.4cm and they were able to do a lumpectomy and radiation. It depends on where it is located. I had the Oncotype test done, against my Oncologist advice. My surgeon ordered it for me. It came back that my type of tumor would respond only 1% to chemo., so I skipped that. Lymph nodes were negative. Did 38 radiation treatments. and now take femara, that was 2 yrs ago. Insist on that test!! I was 55 and still menstrating, but 6 months later I was post. A mastectomy is not the only option. It makes a difference if it is pure or mixed. You need to find that out.0
rjwax Member Posts: 2
I was Dx with mucinous type IDC on June 8th 2009, I am 36. Clinical staging is Stage 2, 2.2cm, had lumpectomy, SNB and axillary dissection on July 13 (five days ago). Wating for final path report, so do not know yet if pure mucinous type or mixed.
Indeed there is not much info specific to this type of tumor, but from what I have found, it is a form of IDC but with some more favorable characteristics. If I can recall where I saw the info, I will post.
At diagnosis, surgeon presented favorable aspects of this type first, so it is certainly something that stuck in my mind. When I met with a med onc pre-op, I really had to push him about the options with this possibly more favorable tumor type. He was all about how agressive Rx usually is for women <40, because tumors are often more agressive. Asked about role of Oncotype DX if node negative, necessity of chemo, etc. I am interested in preserving my fertility as well. Doc did mention that if tumor is mixed type, the favorbale aspects of mucinous type are more or less out of the running. Of course all this remains to be determined and I am trying not to be too anxious about it! Although I have to think the the pre-surg and pre-path period is absolutely the worst. Each step that has given me more information and a plan of action has been so incredibly helpful to my mental health.
Despite the lower chances of node involvement with mucinous type, ended up with SNB and axillary dissection because I had some "prominent" nodes on bilateral MRI. Was then sent for a fine needle aspiration of lymph nodes that was inconclusive (argh!). During surgery one of two SNB nodes "grumpy" (my term) so they did proceed to dissection, and a few of those nodes looked grumpy too. Still holding out hope that they were just grumpy and doing their job and do not have tumor cells in there.
Hang in there,
Ladies, If you have a pure mucinous colloid, insist on that Oncotype test. In 2008 the NCCI rules that a pure mucinous colloid does not respond to chemo. Radiation after surgeryt is the front line treatment. The test is $3600.00 some insurances will pay, some not. The company has its own plan I had to pay $150.00. Well worth the money to avoid chemo, esp. those of you who are child bearing age. If your tumor is mixed, thats a different story but if pure have that test. My tumor was over 5 cm. and I got to avoid chemo. Had radiation and now take Femara that was May 2007.0
rjwax Member Posts: 2
I ended up with lymph node involvement, so although the tumor retained its mucinous characteristics throughout as far as I can tell, I still have to have chemo. it is still invasive ductal canrcinoma with lymph node involvement- 3 of 22. Final size from lumpectomy was 3cm. bummer for me.I will also get rads after chemo since I had a lumpectomy.
A sample of my tumor was sent for a test that is like oncotype dx that they are currently trying to validate for early stage BC with lymph node involvement. I have not gotten the results yet, but it will not change my treatment. But will give me an additional sense about risk of recurrence, I guess.0
paulafromhi Member Posts: 1
Peggy, I just read your posting and it is scary how we are the same age and have the same diagnosis. I feel like I have a twin out there. I just had a biopsy done on Aug. 13 and given the news on Aug. 17. Like you I am in a state of shock. Thank you for your posting because I have learned more from everyone that responded then what I have read on the internet. In doing research, and from what I have experienced so far, I feel that Hawaii is not the place to have treatment of this rare cancer and I have decided to have treatment on the mainland. I am trying to decide on what to do but favoring getting a lumpectomy. Good luck.0
sdrayton Member Posts: 3
I feel like I must add my history, as I didn't fit the profile of a "typical" mucinous carcinoma patient, either.
I was diagnosed at 31 with a 6cm, stage 3 tumor. I completed neo-adjuvant chemo (CAF) which shrunk the little sucker significantly for a lumpectomy, then had taxotere and rads, followed by 5 years of tamoxifen which I will complete in a couple of months. I'm 37 now. Apparently, the mucinous variety does tend to respond better to adriamycin and cytoxan, so, although it's a rare cancer type, our prognoses tend to be better.
Chemo was definitely brutal, but it was doable. I just had an oncology checkup yesterday and am doing fine.
I wish you all well.0
It makes a BIG difference in your TX if your mucinious tumor is pure or mixed. If it is a pure it does not respond to any chemo as well. If it is mixed, then the favorable charactreistics are not so favorable, and you need based your treatment on whateever the mixed part is. Totally different. All mucinous turmors are not created equally!0
Girls, your stories are very encouraging Thankyou!
Im so glad to find this site because nobody round here seems to have heard of mucinous cancer and it has been hard to find any information since I was diagnosed last week.
My lump is oestrogen positive and I have been started on tamoxifen to make it smaller before they discuss surgery, am waiting very anxiously for results of CT scan looking for secondaries but what I've read says they are less likely than with other sorts of tumour? I don't want to get into chemo or big reconstruction stuff but so far not sure what my options will be. This waiting is hard isn't it!0
pattycat Member Posts: 1
Hi everyone, I was diagnosed with mucinous carcinoma when I was 31 years old, I a now 57. At that time they new so little about this rare type of breast cancer. I had a mastectomy with no positive nodes and no adjunct therapy. I went on to have two children, so if it is estrogen positive ,I didn't know. So there is great hope with this type of cancer,good luck to all of you0
Well no secondaries found on CT so that's very good but i have to wait till the new year to talk about surgery. I'm finding that very stressful as I'm walking round with a 6cm cancerous lump and nothing seems to be happening!
So now Im wondering, am I over-reacting being hormonal because of the tamoxifen or am I just stressed because i have cancer or is it the time-of-the-year?0
WOW, so glad I found you all!
I, too, was just diagnosed with mucinous cancer last month, and I'm 30 years old. To be more specific, I have a stage 1/grade 1, well-differentiated tumor 1.06 cm in size, that seems to be mucinous (and cribriform??), but whether it's pure mucinous or mixed is unknown at this point. I'm not having the lumpectomy until the beginning of January! It's frustrating to wait so long, but at the same time, I'm comforted knowing that the doctors think it's okay for me to wait that long - because it means my situation is not so dire.0
You're very welcome here Raili Good luck on your journey.0
Pudding Member Posts: 2
Hi. I'm new to this forum (just signed up today). I had the core biopsy and the lab pathologic diagnosis was: R breast mass 1.2 CM Malignant Invasive well differentiated breast adenocarcinoma with mucinous/colloid carcinoma features. The Doctor who did the biopsy and gave me the results said it was slow growing, rarely spread to nodes, etc and I left feeling relieved. He didn't mention anything about the possibility of 'mixed'. Now I'm feeling anxious and just need to be with people who understand. I had the biopsy done on Nov.20 and then met with a team of surg-rad-onc, but they didn't really give me much to go on since they say they don't know what's going on until they get in there. I'm seeing another cancer center tomorrow for another opinion. Thanks for listening.0
Hi, Pudding. Just found this post. "Welcome" to the forum (it's hard to REALLY welcome anyone - none of us should have cancer/be here!)
How are things going for you know? Where are you at in this journey? How did it go when you visited that other cancer center for another opinion?
I just had my supposedly-mucinous tumor removed a week ago, and am still waiting for the pathology report that will say whether it was actually mucinous or a different type with "mucinous features"... oh, waiting is HARD...0
DragonladyTina Member Posts: 58
I was diagnosed with a 5.5cm pure mucinous carcinoma (colloid) in Dec/04 I had a bilateral mastectomy with immediate expander recon. No positive nodes or vascular invasion.
It does have a favourable prognosis, rare but not agressive which is a good thing.
I did have chemo and a total hyst. the same year as it was 100% ER/PR positive. I have been on Tamoxifen for almost 5 yrs now and will go off it May 1/10, can't wait!!
I have a lot of info on mucinous carcinoma so if anyone needs more info PM me or email, [email protected]
Hello, I've just registered on this forum this morning and am pleased to find so much info on this type of cancer. Having had 2x surgery in 2008 for DCIS, I was offered a mastectomy/reconstruction. I stalled a bit and was sent for an MRI which came back clear. I had mammo/ultrasound and another clear MRI in June 2009(a "tiny mass" was detected but deemed harmless). My most recent mammo was just before Christmas, followed by a biopsy on New Years Eve. On Monday afternoon the consultant told me it was "not good news but not a death sentence". It seems the "mass" is mucinous carcinoma and has grown from 5mm to 7mm in the course of 6months.(so, still very small)
I was again offered mastectomy/reconstruction OR a lumpectomy with node biopsy & radiotherapy. I have a great consultant and breast care nurse and they feel that either option would be equally suitable at this point. So, I currently have the less radical option booked for 4th Feb.
My husband knows (tho', if I could have got away with it, I wouldn't have told him) but I have yet to tell my 2 adult sons and my mum (who I know will be upset but will give all the love and support anyone could) I went into work straight after seeing the consultant and told them I was "fine" but will have to speak with my manager on Friday &, apart from a couple of close colleagues, I dont plan on telling anyone else there.
Sorry, this is a bit long-winded, waffling and "me" orientated. I'd like to thank all you other ladies for sharing and wish you well with whatever diagnosis/treatment you're dealing with.0
Hi Wizzy and Dragonlady,
I'm glad you're posting here. Mucinous cancer is such a rare type that it can be difficult to find places to talk about it!! And it's difficult to listen to statistics and predictions about things like the effectiveness of BC treatments, because there are so few studies about MUCINOUS BC... and that might make all the difference.
Wizzy, I hope your surgery goes well on Feb. 4.
My surgeon called me last night with the results of my path report... the tumor WAS indeed mucinous, so that's good. The nearby area of "microcalcifications" that she also took out during the lumpectomy was DCIS, which surprised me, because I didn't know you could have two kinds of cancer at the same time. I just keep learning new things all the time...
Anyway, the bad news is that she didn't get clear margins and I have go to back in for a re-excision next week. I didn't expect that. Everything about this is so foriegn to me... having a rare type of BC most commonly found in women over 60, when I am only 30, super healthy, and have no family history of BC... Okay, I know by now that most women with BC don't have family history, and this really can happen to anyone. Our biggest risk factors are simply being alive and female. But this lumpectomy was the first time I'd ever had surgery, and it all just feels so surreal. Probably a re-excision is fairly routine to my surgeon and everyone at the hospital, but to me the thought of MORE SURGERY is kinda overwhelming.0
Sorry to hear you have to go back for more surgery.... and you are so young to have to be dealing with this stuff... best wishes to you for your 2nd surgery - I hope that all goes well and gives the results you want!. When I had my first, they just took a couple of ducts but then felt they should take more. Luckily, both healed really well and I really cant see where the incisions were. I was quite surprised to be offered a lumpectomy with node biopsy once it was "real" cancer when they'd talked of mastectomy after DCIS but I s'pose its the type/size/early detection. I dont like the sound of stuff I've read on here about radiotherapy so will have lots of questions for the breast care nurse on that one!!
Yeah, I am really not looking forward to radiation, either... but chemo scares me even more...
Someone on another BC message board found and posted a link to this article about mucinous cancer - so I will share it here, too! "New Study Questions True Favorability of Rare Breast Cancer Type" (I hope the link works)0
Aliceann Member Posts: 11
So glad I found this discussion group. It is difficult to find information about mucinous breast cancer. I have been dealing with this for eight years and am Stage IV Grade 3. First of all, it is apparent to me that the young ages of the women posting here is significant and the latest news about the difficulty in diagnosing from mammograms is not a surprise to me. I had been religious in having a mammogram done yearly and never had a doubt all was well. By the time it broke through the fat pad, it was 5 cm. Although everyone claims it was slow growing, I believe that the tumor grew rapidly after diagnosis. It required a mastectomy and there was extensive lymph node involvement on the left side. Chemo, Rad., Taxol, and I was back in business thinking this is what was needed to repair the damage of the cancer. About a year later, I had reconstruction on the breast and started to feel good about myself. Within seven months, I had a recurrence on my right side based on a suspicious lymph node in a CT scan. Onc and surgeon felt there would be no problem, but we decided a surgical biopsy just in case. Went to sleep and woke up hearing a nurse talk about getting a bed for me. Huh? I said, "Why do I need a bed?" The right side was loaded with involvement of cancer in the lymph system. More chemo and radiation at the same time. SEs were very bad and I ended up with a frozen shoulder in the process and serious lymphedema as well. I have since had two small contained recurrences in the reconstructed left breast which the surgeon removed easily. Right now, I have gone 3-1/2 years without a recurrence, which is pretty good. I am on Herceptin, once every three weeks and Femara once a day to try to keep this in check. So far...So good! I am not trying to pop anyone's balloon, but be vigilant.0
Pudding Member Posts: 2
Thanks for the welcome, Raili. I went to my new team of doctors and had the tumor removed last week. Results say that the greatest tumor dimension was 1.5 cm, and the Nottingham score said; Histologic grade 1, glandular acinar tubular differentiation 2, nuclear pleomorphism 1 , mitotic count 1, total score 4. Three of three nodes negative. "Invasive mucinous carcinoma" (no mention of mixed or pure)
The first hospital group that I had consulted (where they did the biopsy) sent out for an oncotype dx text without my consent or knowledge one week after I had already told them I was using another hospital group (using the biopsy sample). Not only will I have to pay for that test out of my own pocket (because they sent it out 2009 and I had come nowhere close to meeting my deductible for insurance). To add insult to injury, they sent the test to my new hospital group and had them look at it before I even had the surgery. The score was 30, so now they want to consider chemo in addition to radiation and hormone therapy. I'm sick about the test, because if I understand correctly, I have a 20% chance of this metastasizing in 10 years if I only have radiation and tamoxifin, and not much odds improvement with chemo. I went from optimistic to feeling very depressed. I'm 55.0
Zhel Member Posts: 1
Happy New Year to all. Thanks for the information, as this forum is really helpful for those who seek knowledge about this disease. I am overseas (Australia) and away from mom (in Philippines) now. I had a holiday last Christmas to visit my mom and siblings. First thing she mentioned to me, she felt this lump late last year and she wanted it check, so I seek advice from a doctor and recommended for a mammogram. When we had the result of mammogram, there's a breast mass of about 1cm and a sonogram/biopsy is recommended. She had biopsy last 11/01/2010 and we had the result just this afternoon. I am still shocked as I am not knowldgeable of the findings until I google the disease and jump onto this forum.
Diagnosis - MUCINOUS CARCINOMA & the description is Microscopic Sections show solid nests of tumor cells infiltrating the fibrous stroma. The cells show cytoplasmic pallor with sharply outlined cell borders. Other areas show well differentiated tumor cells floating in lake of mucins.
Her doctor advised for an immediate mastectomy but I am to seek for a second opinion before any treatment. I will decide tommorow as I need to contact my friend to assist her. I'm afraid and worried. It's hard when you're away (away to work to be able to support my family financially). Fingers crossed, God is with us! God bless everyone.0
NewBride Member Posts: 126
I am also glad that I found this board. I just had a left breast, nipple sparing MX with immediate recon direct to implant with Alloderm. This was for hi grade DCIS over an area of about 4cm. I elected not to have SNB due to the non invasive nature of DCIS. Consults with two breast surgeons and an oncologist supported me in my decision. Imagine my surprise to learn that pathology turned up a 1.1cm nodule with abundant extra-cellular mucin deposition. Now what?
I have an appt with OC tomorrow. BS is bringing my case up on breast board (like tumor board but for BC only). Any information that you have or any questions that you think I should ask my Drs. please share. I will certainly post what comes about as a result of my review.
I must say for a cancer that does not often enter the lymph nodes , I sure do see a lot of chemo going on here. I'm just praying that BS got all there was in MX. But she is already preparing me for the most likely possiblity of chemo.
I was DXd at age 50.0
Mari77 Member Posts: 1
Hi every one! I'm new to this site. I stumbled to this forum when I was diagnosed with mucinous carcinoma this year. I felt lump in my right breast and had it checked immediately last March. My doctor had me to have it ultrasound and fine needle biopsy was performed. It came out first as benign colloid in nature lump. As I am only 38, and the result said benign my doctor opted to observe it first. But tho it said benign and the lump is a little painful during my menstrual period after two more appointments, I asked the doctor to have it remove once in for all as it increased my anxiety whenever I felt it. He excised it last week of December and the specimen was sent for histopath. Lo and behold it came out as Mucinous carcinoma....It was like being kicked in the gut to be diagnosed as breast cancer when all the while we all thought it was benign??. Anyways, two weeks ago, I returned to OR to have wide excision and axillary clearance. Margins were clear and no mets to the lymph nodes thank God. Now got this very sore armpit which looks deep, maybe coz the wound was still a little swollen. Got the stitches removed yesterday and was advised to move the arm and exercise it. The arm is painful to move and heavy but I'm trying to do housework minus heavy lifting on the affected arm. Going to see my oncologist today! Wish me luck, hope he will not suggest chemo coz my husband and I are still trying to get pregnant. Had miscarriage last year which soon after I discovered my lump. I went through the phase which all of us probably did like disbelief, anger and acceptance. Now, I just live for the present and tries to live one day at a time....
Take care and may God bless us all!0
Hi Aliceann, Pudding, NewBride, Zhel, and Mari!
I lost this thread for a while, and just found it again. I'm grateful we all have each other here, although mad that we all have cancer!
Mucinous cancer is supposed to be the "best kind of cancer to have" if you have to have cancer, but... IT'S NOT SO GREAT, IS IT! We are so rare. There aren't many of us. And yet, we are not really fitting the expected profile for mucinous cancer, are we.
Have you all asked your doctors how many patients they see with mucinous cancer? My BS/Director of the breast care program (at one of the 40 NCI-designated Comprehensive Cancer Centers in the country!) told me she only sees about 5 women a year with mucinous cancer, and none as young as me.
Pudding, do they even legally have the right to send for the Oncotype test without your consent?? No way should you have to pay for that. Is there a way to fight it?
NewBride, our stories have remarkable similarities, wow. I was diagnosed just a couple weeks after you... except I had the opposite of you - the 1cm mucinous tumor was the one we knew about, and it was when my surgeon removed that that she was surprised to discover a 3cm area of intermediate-grade DCIS. I now have to choose between a 2nd re-excision surgery to get good margins, and then continue on to radiation, hoping & trusting that there's no more cancer lurking undetected in me... or just go for the mastectomy. Such a difficult decision for me.0