Mucinous Carcinoma/colloid carcinoma Breast - Specialist Info

Cubbies1402
Cubbies1402 Member Posts: 5
edited January 2018 in Less Common Types of Breast Cancer

Female 38 years old that have been diagnosed Mucinous Carcinoma sometimes called colloid carcinoma of the Breast . As you may know this is a very rare cancer type and not so common in my age group. I am looking for specialist that has expertise with this type of cancer. I am interested in getting a SECOND OPINION. Can you recommend any hospitals etc ? Thank you in advance.

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  • CC_Caboose
    CC_Caboose Member Posts: 8
    edited February 2016

    Hi Cubbies1402,

    I too am 38 and was just diagnosed with Mucinous Carcinoma in December. I ended up going to Emory University in Atlanta, Ga. and have been working with a Surgical Oncologist, Dr. Styblo, who isn't necessarily a "Mucinous Specialist", but she has worked with this type of cancer before, which is why I ultimately ended up going to her for treatment. I had originally been sent to some random oncologist my OB/Gyn recommended and it was a nightmare! I definately doctor shopped around before I found Emory

    Hope this helps ,

    CC

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  • Cash_
    Cash_ Member Posts: 1
    edited February 2016

    Hi,

    My wife,36, was also recently diagnosed with mucinous carcinoma in December 2015. Hers is a stage 1 grade 2 er+ pr+ her2- pure invasive mucinous carcinoma. She had a lumpectomy 4 weeks ago and plan to do do mastectomy soon. She is node negative too, but her oncotype dx came back at 24 (intermediate) so we are struggling with chemo or no chemo decision. Without oncotype dx we would have definitely not done chemo. Currently we are researching the validity of oncotype dx for such subtype of cancers and gotten multiple second opinions (incl. UCSF) with no unanimous satisfying concrete yes/no answer to chemo. We are currently leaning towards no chemo (because of age and long term side effects unknown) and would like to see what others have done or considering doing. MD Anderson in Houston seems to be a good place for these cancers and have any of you got a second opinion from them?

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  • lreboh
    lreboh Member Posts: 2
    edited March 2016

    I was just diagnosed with mucinous carcinoma. Its stage 2 and is er+ pr+ and her2 positive 3+. They are retesting the her2 positive as they are hoping its a mistake. Has anyone ever had the same diagnosis?

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  • lreboh
    lreboh Member Posts: 2
    edited March 2016

    I am also positive for the hormonal type and Her2. My doctors tell me that this is probably a mistake. It came back 3+. They say that they never heard of a case that was positive for all three. They are doing the fish test presently and have the lump and lymph nodes removed tomorrow. I know John Hopkins in Baltimore does have a rare cancer division and do deal with this type. I may make an appointment with them. What do you think?


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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2016

    Hi lreboh, and welcome to Breastcancer.org!

    We're sorry it's taken so long for you to get a response, but hopefully others will join in soon with their advice/experiences!

    In the meantime, you may want to check out the main Breastcancer.org site's page on Symptoms and Diagnosis of Mucinous Carcinoma of the Breast, which mentions that nearly all mucinous diagnoses are HER2 -, and suggests that if you're diagnosed with HER2+, the doctors re-test, so it looks like you're on the right track.

    Have you gotten the retest results or learned anything new since you last posted?

    Also, how did your surgery go?

    We're all here for you and hope to hear back from you soon!

    --The Mods

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  • FeelingtheMagic
    FeelingtheMagic Member Posts: 155
    edited May 2016

    Hi all, Just happened to find this post. I was diagnosed with mucinous with Her2+. Very rare, yes. Unfortunately, there are a few of us now. I'd like to recommend those who are posting here join us on the discussion: Mucinous Carcinoma of the breast It's been ongoing for years, and its where I have found the resources I needed to understand the diagnosis and even ultimately send my oncologist in the right direction to determine the treatment plan. (And yes, there was a redo on my pathology.) Hope you will join us there. Meanwhile, I realize you will all likely be undergoing treatment now and I wish you well.

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  • Shellybean
    Shellybean Member Posts: 11
    edited October 2016

    Yes. Retested twice, 33 at diagnosis. 3 tumors in the left breast and they were all mucinous carcinoma. Finished chemo in June, still getting herceptin until march of 2017.

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  • Pammac47
    Pammac47 Member Posts: 128
    edited October 2016

    Dear ladies,

    I completed my surgery and this is where I belong too. My bc was multicentric and they removed 5.2cm, 1.3cm, and 1.1cm. 3/17 nodes positive macromestatic and one positive margin. Pathologist is running additional tests for tumor board. I had chemo prior to surgery as well and now am healing for radiation next. I guess I had a lot of mucous in my body. This type of cancer is supposed to be easy to treat? I've been told doesn't respond well to chemo honestly I know very little about this type. Have read doesn't usually go into nodes, but here I am. My doctors were surprised by the size?? I kinda feel like a lab rat. Anybody go through similar?? Mine says IDC with mucinous differentiation. .Histological type-mutinous carcinoma.

    Pammac4

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  • MandyC13
    MandyC13 Member Posts: 3
    edited November 2016

    I was diagnosed with breast cancer in August but only after my mastectomy in October was it confirmed to be Mucinous carcinoma. I'm yet to find out if mine is pure or mixed but since I spent the first two months following my diagnosis making treatment decisions based on the assumption I had a more common type of cancer I'm feeling a little at see. I'm due to see my oncologist on Monday to discuss the possibility of chemo as part of my treatment plan. Part of me feels like I want to do it and blow this cancer to kingdom come but part of me is concerned if it's not really necessary. I've already been told that due to node involvement radiotherapy and tamoxifen aren't optional. There is so little information available about this type of cancer and a lot of it is conflicting especially for younger women (I'm also 38 years young) and it's even harder to findothers with similar Dx based where I am in the UK. I'd be grateful or any advice. Thanks.


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  • Pammac47
    Pammac47 Member Posts: 128
    edited November 2016

    I had neoadjuvant chemo it did not make a big difference, as it's not always effective in this type of cancer. Not saying don't do, but I would try to find out what types are most effective. In hindsigh

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  • Yamimar
    Yamimar Member Posts: 3
    edited January 2018

    Hi, I’ve been recently diagnosed with mucinous carcinoma and I’m waiting for my blood test results etc. Wondering what contraceptive methods you’ve used? I’ve used the IUD copper coil for years. Copper itself increases estrogen levels and I have read that mucinous carcinoma is estrogen dependent. Wondering if there is a correlation between both and if the copper coil was somehow the cause of this very unusual cancer on me. Anyone here in the same situation?

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