Mucinous carcinoma...anyone?

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tsp4406
tsp4406 Member Posts: 16
edited January 2017 in Less Common Types of Breast Cancer

Hello! So I have just been diagnosed with this...rare, typically in 60-70 year old women, I am 41. I know it's a "good" rare, but I would LOVE to hear from anyone who has this.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2017

    Hi tsp4406:

    There is thread for members with mucinous carcinoma here that you may wish to join:

    Topic: Mucinous Carcinoma of the breast:

    https://community.breastcancer.org/forum/137/topics/733018?page=61

    BarredOwl

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  • heartfull
    heartfull Member Posts: 36
    edited January 2017

    Hi there! I was also diagnosed with mucinous carcinoma in December 2016. The BS asked for an MRI to try to confirm the size of the mass in my right breast. They also found a small 1 cm mass in my left breast and getting a biopsy on that tomorrow. How are you doing with your diagnosis? What is the size of your mass?

    Hugs!!

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  • obsolete
    obsolete Member Posts: 466
    edited March 2017

    Welcome to you both and so sorry 😞 you needed to join us. At the link noted above by our other sister, you'll find tons of info and reference links. Please get 2nd opinions on your surgical pathology and also presurgical MRI, which your insurance will need to preauthorize. Good luck 🍀 Best wishes, ladies. Hugs!!

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  • heartfull
    heartfull Member Posts: 36
    edited January 2017

    My biopsy on my left breast came back today and it is IDC size 0.8 cm. I am in total disbelief! So hard to believe that there is cancer in both breasts, let alone two different kinds. I see the surgeon on Friday!

    Thank you to anyone that has been through this!

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  • obsolete
    obsolete Member Posts: 466
    edited March 2017

    Heart, so very sorry to hear that. I promise you that your mind will be more at ease after your surgery. At least both tumors were identified, and they're smaller. Could it be that the reported IDC is more specifically IDC with mucinous features (aka mixed mucinous?) vs any pure mucinous carcinoma in your other breast? Pathologists are trained differently and thus label lesion variants differently. Please be assured that after surgery the pathologists will examine the entire tumors to make a final determination. Mucinous often presents in multiples. In my case it did and in both breasts. You are not alone. please do something special for yourself (massage, spa, aromatherapy, etc) to help your emotional burden at this time.
    . Hugs...

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  • heartfull
    heartfull Member Posts: 36
    edited January 2017

    Hi and thank you so much for your msg. I saw the doctor & he is suggesting a double mastectomy due to both very dense breast tissue with lots of cysts. I sort of have accepted that, but worry about chemo if needed. He say she it's a Strong possibility due to the size...5 cm...just hard to believe

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  • obsolete
    obsolete Member Posts: 466
    edited March 2017

    Heartfull, so sorry that you're having to go thru this spinning wheel of emotions. Will you be getting an Oncotype assay run on your tumor? Many mucinous tumors, regardless of size, score low- medium/low on Oncotype or mamaprint and do not need chemo, but it's up to YOU to decide with your oncologist and medical team. Please visit the Mucinous Carcinoma thread (link below). There's a reference link about a patient who had an enormous pure mucinous tumor (4 X larger than 5cm).

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC30835...

    Mucinous Carcinoma thread:

    https://community.breastcancer.org/forum/137/topic...

    38% of mucinous carcinoma patients have multiple mucinous lesions, according to M.D. Anderson study, so please know that you are not alone. I had a dbl mastectomy also. Please visit the mucinous thread and keep us posted on your progress. And please get 2nd opinion(s) on your pathology after your surgery. Hugs and best wishes!

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  • heartfull
    heartfull Member Posts: 36
    edited January 2017

    Thank you so much for your reply! I have lots of questions and trying to educate myself as much as possible. Do they run the Oncotype assay before surgery or after surgery (after the final pathology results)? I will read more about that as well as mamaprint. A quick question about getting a second opinion opinion on the surgery path results...how do you go about that? Do I ask the breast surgeon or the oncologist?

    In regard to chemo, super scary...were you able to avoid chemo? Did you have reconstruction after surgery? Sorry for so many questions, but my head is spinning! My next step is that the breast surgeon wants me to see the plastic surgeon on Tues to see if he thinks that there will be enough room for the expander (doing skin-sparing mastectomy) or does the mass need to be shrunk down via chemotherapy before surgery....yuk!

    Thank you for your kindness and for your warmth. It's so nice to talk to you and any others that have been through this. Thank you so much and hugs back also!

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  • obsolete
    obsolete Member Posts: 466
    edited March 2017

    Heart, hope you're feeling a bit better today. Onotype testing is done after final surgery & final pathology. Your doctor can arrange this. Check with your insurance for coverage

    2nd opinion on final pathology, you can arrange with your hospital pathology department to send your slides out to a specific NCI path lab that employs breast pathologist specialist. Again,check with insurance.

    Because I had a low Oncotype score, chemo was not recommended . Many patients get Mamaprint also.

    I also had multiple tumors, thus double mastectomy had been a good choice for me. After the BMX, I declined further surgery (reconstruction).

    You can also seek out a Nurse navigator at your breast center to help guide you through the process because it's a huge learning curve. Remember you're not alone.

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  • heartfull
    heartfull Member Posts: 36
    edited January 2017

    Thank you so much for your good information! I will definitely check further regarding the Oncotype and Mamaprint! I just don't want unnecessary or not helpful chemo! So happy to hear that you did not need chemo...that is wonderful!

    I will keep you posted...going for an appointment tomorrow with the PS to determine if this mass on the right needs to be shrunk before surgery. I have lots of questions and appreciate your help so much! Thank you!! :)

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  • heartfull
    heartfull Member Posts: 36
    edited January 2017

    Update: The plastic surgeon says that he's good with going straight to surgery! Sooo...just waiting for my surgery date now! I'm nervous, but I'm ready!!

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