7 tumors - no special type - all same at cellular level

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Ashweb901
Ashweb901 Member Posts: 67
edited September 2018 in Surgery - Before, During, and After

Got my pathology from surgery today. Allegedly incredibly good report - no cancer in sentinel node. 7 tumors, all right breast...three sets of twins: two 5mm, two 7mm, two 17mm, and one 9mm. No rads, no chemo. Stage 1 grade 1. Lobular "features" but no special type (ductal), not otherwise specified.

But obviously multifocal (at least not multi-centric). So isn't SEVEN kind of bad? Or maybe a lot bad? They are 11:30/12, 2:30, 3:00, 3:30, 4:00, 5:00, 5:30.

Tamoxifen is what I'm hearing I'll have to take. I had a BMx with TEs 10 days ago.

Ashley

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  • Adelozier
    Adelozier Member Posts: 84
    edited September 2018

    I'm going to bump this tread

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2018

    I have two tumors in the same breast. One at 11:00 and one at 3:00. BMX surgery is scheduled for September 27th. When I asked if having more than one tumor is common she said yes and to not worry about it. The main concern is my lymph nodes.

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  • Ashweb901
    Ashweb901 Member Posts: 67
    edited September 2018

    here’s a resource for anyone in our same boat, Adel-

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5583173/

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  • Ashweb901
    Ashweb901 Member Posts: 67
    edited September 2018

    @aaj0704 she's right that it matters about ge lymph nodes. That's your first concern. The next concern is what your final path report says your tumors consist of. Are they in the same quadrant of your breast? Since yours are slightly different quadrants if they ar the same content, that's multifocal. If they are of different content, then it's multicentric.

    When there are multiples, based on how the cells look, sometimes the pathology will say IDC “with lobular features." Lobular breast Ca has distinct features.See the link I posted on this thread.

    The staging and risk of recurrence algorithms are based on the size of the biggest of your tumors. However, some researchers are questioning if this is accurate since if it's lobular features or even lobular cancer, those have proven more sneaky and don't always respond to the same treatment as ductal. Right now the standards have stayed the same: treat IDC with lobular features as IDC. That's may change if more studies are done.

    Not a doctor or a Nurse but I've had to play one bc Cancer!

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  • KushtiBok
    KushtiBok Member Posts: 5
    edited September 2018

    Glad your report has came back good. I have my BMx with TEs this Thursday the 20th. You give me hope. Keep me updated.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2018

    @Ashweb901 - Thank you for the information and link. I did read that article after I met with the BS as my original pathology report came back ILC and IDC. It was a bit confusing to me as the radiologist who called me with my diagnosis said it was ILC. My BS is at a different hospital and had my slides reviewed by their pathologist and there pathology report came back ILC. As for the same quadrant I don't know as originally one was reported at 1:00 and the second at 3:00. Then changed on the pathology report to 11:00 and 3:00. A nurse told me both ILC and IDC are treated the same they just to like to know what type. More studies do need to be done though.

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  • letsgogolf
    letsgogolf Member Posts: 263
    edited September 2018

    I also had a small, grade 1 IDC with lobular features tumor. Apparently, these are often low grade with high ER, PR and are usually Her2-. Often spiculated and less likely to spread to other parts of the body. Strange that they also spread to the first sentinel node around 50% of the time which is higher than most other types.

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  • Ashweb901
    Ashweb901 Member Posts: 67
    edited September 2018

    ugh - I just came from my oncology appointment. While the treatment protocol she recommended is sound, she is not at all informed about the IDC-L subset and how it behaves. She is a lobular expert and told me it was not worse than IDC. She totally didn’t get my point that it’s not worse, it’s just sneakier and different(reoccurs later than the 5-yr window, Mets to different places than IDC “chooses,” etc.

    So I’m going to take the AI she recommended (femara) and shop around.


    Ashley

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  • Ashweb901
    Ashweb901 Member Posts: 67
    edited September 2018

    @letsgogolf and aaj0704,

    I just don’t believe that IDC and ILC should be treated the same. I also don’t believe that there’s nothing different about IDC with lobular features.

    I’m not insisting that my first step (an AI inhibitor bc my estrogen levels are “menopausal”) should be different. It’s that the surveillance should be different, and in my case, i want some complementary medicine for my MTHFR variants - I’m homo for one and hetero for the other. My onco today was completely uninterested in even giving me a referral to someone who could help. Not only am I concerned about DNA synthesis and repair but also mental clarity. (One of the MTHFR variants has neuro effects.) I asked if maybe I should get a script for the pharmacy grade fish oil. Not interested!

    Imma shop around

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2018

    I would shop around too. This information has been so helpful to me. Thank you.

    I have six more days until surgery.

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  • Ashweb901
    Ashweb901 Member Posts: 67
    edited September 2018

    you are welcome! Good luck with surgery. My onco surgeon, whom i trust, still insists that the Oncotype and mammoprint combined with my pathology trump all else (like multicentricity or features) and as long as I take the AI, I will have a 2% risk of distant recurrence. Sigh...I’m still going to keep researching. I told him he would just be my oncologist for nowbc the one i saw was not a good fit.

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  • Ashweb901
    Ashweb901 Member Posts: 67
    edited September 2018

    @kusihtibok how are you doing? The first five days are hard. Promise it gets eaise

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  • KushtiBok
    KushtiBok Member Posts: 5
    edited September 2018

    @Ashweb901 I'm doing good! I am home resting now. Stiff and feel like sharp needles poking me, but doable. BS said I should have pathology back Wed. Praying for good results. Thanks for asking:) 

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  • Britspeech
    Britspeech Member Posts: 23
    edited September 2018

    Hi Del10 how did it go today? Im very sore in sentinel node area. Not able to lie down without pulling stitches but otherwise minimal pain. Have mega pain meds but haven't taken them , just antibiotic and extra strength Tylenol. may take one later to sleep. will find out results of sentinel node in 10 days.Hope your surgery went well


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