Mucinous Carcinoma of the breast
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I too had mucinous carcinoma. My original diagnosis was dcis and I had a left breast lumpectomy but when my pathology report came back after surgery it showed a 3 mm of mucinous carcinoma and also dcis still in the margins. I went to a breast specialist and had MRI. There was no more cancer showing in either breast except residual margins but I did elect to have a left breast mastectomy with reconstruction. I just couldn't deal with having another lumpectomy and it still coming back with bad margins. The good news typically with mucinous carcinoma is that it isn't agressive and does well with treatment. I'm also still menstrating and 48. I read the same stuff as you but my surgeon says she sees it frequently in younger women too. Take it one step at a time and you will get through this. I have my tissue expander in and am getting closer to implant surgery. Best wishes for you.
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Hi Everyone
I'm not sure if I'm posting correctly but will see how I go. Thank you for the invaluable information on this site.
I was diagnosed with DCIS and Mucinous Carcinoma (8mm) in Niv last year and underwent LB MX. No lymph node or intervals ulnar involvement. Estrogen and HER2 positive. Grade 3 tumor and DCIS.
Have undergone 9 weeks taxol, ended 3 weeks early due to toxicity. Now on up to treatment 6 herceptin. Hair growing very slowly.
I notice that some others who had HER2 positive mucinous BC had carboplatin and taxotere chemo. Does anyone know the difference with taxol?
I'm seeing oncologist next week and have been told I will be starting tamoxifen soon, also noticed some discussion on AI. What is the difference? And what is the standard treatment.
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Austjourney...We've had a few sisters who are HER2 positive and received chemo. Perhaps they will chime in with regard to their treatment. However, it is my understanding that Taxol is considered a "lighter" chemo...No one knows with certainty which chemo plan is best for mucinous breast cancer because it is so rare. And HER2 positive mucinous breast cancer is even rarer. But the fact that you are Grade 3 means that you will probably respond well to chemo, whereas patients with Grades 1 and 2 benefit less from chemo.
Regarding Tamoxifen and an AI...Tamoxifen is usually indicated as the standard of care for premenopausal patients for 5 years, unless they have other issues that may be contraindicated. An AI is usually given to postmenopausal patients for 5 years.
There is some research that indicates that patients can continue endocrine therapy for longer. You can read more about it in the NCCN 2013 breast cancer guidelines. Register at the NCCN's website and look for the professional version of the breast cancer guidelines and read pages 95 on....to approximate page 100. It discusses endocrine therapy and all of the latest research. BTW...the professional version...when you are looking at the various breast cancer guidelines has a little RED logo.
I wish you well with the rest of active treatment and beyond!
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Oh, Lordy! I just wrote a post for Austjourney and Voracious, and when I pressed send I was signed out, and it's all lost! Okay, try again. Dang.
Austjourney, I'm one of the sisters diagnosed with mucinous and Her2+. Sorry to see you here, but glad you've found your way to this discussion so full of resources and support. Follow everything Voracious posts. Her links led me to NCCN, which led to having my doctors retest all my results, consult with top oncologists, and even to a different treatment plan.
You'll see my treatments in my signature. Two herceptin treatments left, and am currently on tamoxifen. PLan is 2 years tamoxifen, followed by 3 years AI. Tamoxifen is do-able for me. After researching, I decided just starting was the way to find out. I can get moody, sometimes lots of energy, sometimes none...I won't even begin to judge whether it's tamoxifen or tamoxifen/hercetin or leftovers of chemo/tam/herceptin that cause side effects. After nearly a year of treatments, I can say that generally I'm always improving, and I'm happy about that.
Hair is growing back slower than Santa... now at a pixie length that looks like I meant to do this hair do. ~smile~ Heard rumours that it is the herceptin that is keeping the hair regrowth slow.
Re taxol vs taxotere. Wish I could tell you more, but if you google that phrase there are a number of legitimate sites to explore. Some say taxol has the better survival rate, some say taxotere. They are in a similar family. I'm going to go with that we've each had the right one for us. ~smile~
Wishing you well, Austjourney. Keep in touch. I'd like to know what your onc recommends re tamoxifen or AI. We are all a resource to each other, and a caring support system.
Voracious, re flash frozen early stage IV: Hard to wrap my head around the challenges for our researchers to get what they need. The oncs and pathologists need to know. I'll do what I can locally to spread the word. It's the women diagnosed who can most push for this, but they would be very hard to reach before they started treatments. I'm wondering if a new discussion with the information posted in Rare, and directed at woman with early Stage IV diagnosis, might reach some women. After all, there's a whole lot of us who found ourselves on this site early on. What do you think, Voracious? I'd recommend you start it as you are the best informed.
I wish there were more I could do to help them. They know we're here, though, if they need us! And Voracious, thank you again. When I go on facebook now, I snicker thinking of you immersed in research. Smile, snicker, and oh so grateful.
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Thanks for your replies ladies and FeelingtheMagic it's nice (well sort of
) to meet a similar rare diagnosis.
I've just this week had my expander replaced by the implant so another step forward
. Seeing my oncologist next week so the information is very helpful I'm allowing me to understand the differences.
I did refer to the NCCN guidelines this week as I saw it mentioned in some of your earlier posts. I'm surprised its not recommended reading for all BC patients, it would have been helpful earlier on when making treatment decisions. None the less I think I will ask for a 2nd pathology and also ask about the differences in chemo treatment. I know my Ki67 score was only 1 point more than the chemo cutoff so that might have something to do with it. Anyway agree each individuals treatment plan is tailored so they hopefully have the right treatment for them
Thanks once again ladies.0 -
Austjourney....Glad you found the NCCN guidelines helpful. You are absolutely correct that it should be required reading for ALL BC patients BEFORE they decide on their treatment. The guidelines are filled with valuable information....even the footnotes are important. When sisters arrive on ANY discussion board thread I urge them to read the guidelines. They are a great STARTING POINT in the journey. Again, I wish you well during active treatment. Glad you're requesting a second pathology report. Hope you'll let us know what treatment plan you decide and of course, we'd love to hear how you're doing! Thoughts and prayers to you and of course...to all our sisters!
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Austjourney,
It is more than a little disturbing that even today, 10 years after I was treated, patients are not routinely advised about the existence of the NCCN guidelines as part of their very early discussions with providers. Even most of those who work in the health care field and who are diagnosed, often do not know it is there to explain the rationale for the recomendations their care providers give them. Adding to the confusion are the periodic changes that are made to update them as better diagnostics and treatments are found and all too slowly added to them.
They are sophsticated tools and some patients are not going to be able to use them but most could. I think care providers tend to see the guidelines as tools for their own use, And then there are differences between the guidelines used in the US and guidelines used elsewhere. Some consider the guidelines that are used elsewhere as being more progressive and/or less dominated by such influences as medical conglomerates or the pharmaceutical industry.
A.A.
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I had a lumectomy yesterday. I was so excited with the mucinous carinoma diagnosis because of the chance of not having chemotherapy. Unfortunately, the sentinel biopsy showed that more lymph nodes needed to be removed. I'm pretty depressed today thinking about going through this. I feel like I could deal with the radiation, but the prospect of chemo is overwhelming.
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((((Hugs))))) All the dogs. You'll get through it all!! Just stick around with these amazing women, and we'll guide you through it here at BCO!
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Lots of prayers "All the Dogs", it sure does get discouraging when you get your hopes up not to need chemotherapy then to find out that due to needing more lymph nodes removed that chemo may be necessary. So I am back in action doing more frequent prayer for my MC sisters so you can be the top of my list now being the most recent addition and because of your concerns. MC is still the best diagnosis so don't let the latest change get you too depressed. The radiation itself is certainly do able and was nothing like as bad as I anticipated, so I do pray that is your experience if you do have to have chemo. meanwhile hugs, blessings and encouragement from "down under " in Sth Australia.
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looking for your expert advice please: in a little while I will have a followup with my surgeon. i've just had a double mastectomy followiing a reoccurance of muscinous carcinoma in a radiated breast. What questions should I ask him to determine what factors may affect another re-occurance?
1/ Is the risk greater that MC will show up in other mucus creating body parts? vs organs/bones close to the the originating breast?
2/ Is there ANY way to reliably know they got it all THIS time? it seems one or two cancer cells could be hiding almost anyplace.
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Hi Katiekaboom, I have just seen your post and had just been praying for you from my prayer list. Sorry to hear you are dealing with a double mastectomy and the concerns you are facing. I don't have the expert knowledge you are requiring I am sure VR will have some information for you, however I can commit to praying for you regularly. Hugs and
and blessings Tricianne.0 -
Katie.. Mucinous breast cancer is distinct and very different from other types of mucinous cancers. I am sorry to say that there is never certainty that all cancer cells have been caught. You don't mention if you are pre or post menopausal... There are many treatment options for local recurrences. I wish you well!
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Hi...I have read pretty much all this thread over the past month or two and have found the information very useful, thankyou. My heart goes out to everyone here. It feels good to be among understanding & knowledgeable people.
If anyone could shed light on my path reports I'd be very grateful... my head is spinning from too much information, and despite asking questions of my oncologist I still don't have any satisfactory answers.
I should probably say that I'm in the UK, had a lumpectomy in late March (21mm IDC, grade 1, ER/PR +ve, HER2 -ve, 0/3 nodes) but the margins weren't clear. Followed this with mastectomy a month later where a further 18mm was found (gulp), also Grade 1.
Lumpectomy path report says 'there is high and intermediate grade DCIS seen intermixed with the invasive tumour. Focally it has prominent mucinous differentiation'. Also 'lymphovascular space invasion is seen'. Mastectomy path report says 'specimen... has prominent mucinous stroma'. Again, DCIS was found. And this report again mentions that the lumpectomy 'also had a prominent mucinous component which was also present in the main tumour'.
The oncologist didn't answer me clearly when I asked about the significance of this. She didn't seem to think it mattered. I want to know if the tumour is pure mucinous, or (because of the DCIS, IDC components???) a mixed tumour?
The oncologist has suggested chemo due to the tumour size and family history. I'm now waiting for results of the oncotype dx test to help with the decision. Any thoughts would be really appreciated as my anxiety is high right now and thinking straight is not so easy!!!
Many thanks.
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Mumofone...it appears that your invasive tumor is pure mucinous with a bit of non invasive DCIS. Mixed mucinous refers to an invasive tumor that has both mucinous cancer with traditional invasive ductal mixed in with it. Glad to hear you are getting the Oncotype DX test which should help decide if chemo is necessary. Good luck with your active treatment and keep us posted!
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Hi voraciousreader, many thanks for your reply. I got confused because my surgeon told me (after the lumpectomy) that the tumour was IDC and never mentioned the mucinous part... after the mastectomy a month later he did then mention it was mucin producing, but not much else. I asked for the pathology reports when I saw the oncologist 3 weeks ago. The first one says 'the tumour is an invasive ductal carcinoma of no specific type' and then continues as I outlined in my previous post.
I find it very confusing! Like some others, a large portion of the tumour was not detected by mammo/US, nor could it be felt. I had a cyst, supposedly benign (after being checked out twice), that was there for a nearly ten years in the same area of the breast. I can't know for sure that it was related but my instinct says it was, and I'm so angry it wasn't dealt with earlier. I should have insisted, I know that now.
My next biggie is whether or not to do chemo. The oncotype dx results should be back next Tues. It'll have to be a quick decision because my surgery started 10 weeks ago, and my last operation was 6 weeks ago.
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Mucinous breast cancer is a type of IDC. If you have any questions, you should double check with the pathologist and the oncologist. It seems that many pathologists have different ways of describing mucinous breast cancer....
Good luck.
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Thanks again. I keep asking questions - they (the doctors) just don't seem to have answers. This thread has helped much more than anything else
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You might also ask that a SECOND pathologist look at the specimen. With rare breast cancers, most pathologists don't see that many mucinous breast cancers and if you line up 5 pathologists...you'll get 5 different reports...each slightly different from the other.....
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Yes, it worries me that pathologists might differ so much, particularly here in the UK where mucinous tumours don't appear to be recognised as anything different (in my experience). I need to be more pro-active...
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HI Mumofone, it looks to me like you're being pro-active.. you're here. You're doing your research. Give yourself credit for all of that. (Picture me sitting here cheering, "Yay Mumophone!!") I asked to have a second opinion from pathologists in another city, and they agreed without hesitation. I don't think it's an uncommon thing to request when the diagnosis is rare. Best wishes to you!
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I did the same with the second opinion coming from a cancer research center. From that, I learned that I didn't have a "pure" mucinous cancer after all. While I don't think my decisions would have been different. Having the second opinion sooner would have been helpful to me.
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Thanks so much for the support
. I've been quite down recently, and can't stop all this information churning round in my head, like a big tumble dryer! The results will come back Tuesday, and hopefully I'll see the oncologist Wednesday. I'm going to push for a decision regarding pure/mixed tumour and if that needs another path report then so be it. Trouble is, I'm getting further and further from surgery now feeling slightly panicked :-/.It is helping to come here and talk!
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Hi Mumofone, I do appreciate your picture of a big tumble dryer churning around with all these chunks of information. That describes the whole situation really well. It does start to settle down and you make choices that suit your condition but it sure is a topsy turvy time. So my prayers for you is that you start to feel peace and more sureness. Love and blessings
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tricianneAust, thanks for your kind words. In some ways I find this time more difficult than the surgery. Actually... it's all pretty difficult, just in different ways. It's good to know that you understand
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Hi all I was diagnosed last month with mucinous breast cancer, had surgery Monday with LICAP reconstruction, will get results of nodes and margins in 3 weeks, so hate all this waiting.
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Mandksmum, welcome to BCO. We are so sorry that you are going through this, but at the same time we are glad you found this great community for information and support.
The waiting is terrible, we all understand, so please post here any time you need to vent. You are not alone.
Sending you hopes for the best results.
---The Mods
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Mandksmum, sorry to hear that you need to join us, certainly this is the best support and info that I have found for Mucinous cancer so in that way its good that you do use this resource. The waiting is the worst as there is so much that takes over our thinking and emotions. One of the definitions of FEAR is False Evidence Appearing Real and we all do fear the worst until the facts come out differently. So my prayers for you are that the facts end up being manageable and hopeful. Blessings from Downunder.
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Mandksmum, I can't totally sympathise with your frustration at waiting... we've all had times when the waiting is pretty unbearable. I found post-surgery was the time when I just needed to concentrate on healing and tried to put the rest of it to the back of my mind. It's all such a whirlwind - your results will be ready when they are ready, and you have time now to allow your body to recover from the trauma. I'm sending healing thoughts
. I've found this forum a great source of information and strength and hope you do too.0 -
Well... my oncotype dx results finally came back. It seems I am at 'low risk' for recurrence (we don't know the actual score yet) and my case has been reviewed. It is being recommended that I don't do the chemotherapy that my oncologist was originally offering me. However, the person we spoke to (by phone) said that radiotherapy was now being offered instead?! I'm hoping that's not the case (mastectomy, large margins?) but will know better after I see the oncologist again in a weeks time.
I'm not sure how I feel yet. Relieved, but still scared. I want to see the report and discuss the details and maybe I'll feel better after that. It's been such a stressful time.
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