Diagnosed Bilateral R:ILC+DCIS, L:IDC+DCIS

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GattinaBella
GattinaBella Member Posts: 5
edited November 2018 in Just Diagnosed

Hi there - 48, diagnosed this past week with bilateral, invasive lobular and ductal cancers, grade 1c. I'm leaning towards a double mastectomy though that seems terrifying, particularly the potential auxiliary node dissection.

The lobular in particular seems vague, it's resisting showing up on imaging so it's extent is unknown. Any advice, thoughts or experiences with either invasive lobular or bilateral would be appreciated!

Cheers!

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    Hiya! Do you feel like you have strong confidence in your oncology team? Are you in a position to get a second opinion? That could help with the process.

    It seems to me that this new article from February about the spread of breast cancer calls into question the universal usefulness of axillary nod dissection. In your position, it's something I'd want to at least ask my doctors about and see if they had a thoughtful answer.

    I know more about IDC, since that's my diagnosis. With 1c, which I think means it hasn't spread to lymph nodes, lumpectomy+radiation seems to have not only equivalent but actually ever-so-slightly better outcomes to mastectomy.

    Again, not a professional and no personal experience with ILC. So take it for what it's worth. I think I'd definitely want a sentinel node biopsy (only takes a couple of lymph nodes) to verify whether the cancer has spread out of the breast at all, before committing to a mastectomy, and I'd be wary of the axillary dissection in either case.

    Also, as far as I know, mastectomy is always an option later. Like, they do a lumpectomy and then a bit down the line you realize you'd have preferred a mastectomy, or they find something that indicates it. You can go back and do it. If you're far enough out from the cancer, you may even be able to do the mastectomy and reconstruction all in one shot, instead of months of wait in between, which I think could be easier on an emotional level and maybe on a physical one too. Definitely something to at least speak with your doctors about.

    Good luck! Keep us posted.

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  • Dani444
    Dani444 Member Posts: 522
    edited November 2018

    GattinaBella- So sorry for your diagnosis. As you can see by my stats I have ILC as well. It is not uncommon for ILC to hide in imaging due to the way it grows. It fails to clump together like other invasive breast cancers. My ILC was measured differently on mammo, US, and MRI. The best estimate was from the MRI, and the post mammo clip placement after my second biopsy. I struggled with deciding between mastectomy and lumpectomy for a few weeks. It ended up that my surgeon along with the tumor board decided my tumor was too big for lumpecomy (4.8 cm). But the decision is definitely tough, and very personal. Will you be having any additional imaging? As for the sentinel node biopsy, I think you would want to know if it has spread locally so they can come up with the appropriate treatment plan. I only had 3 nodes taken, some only have 1, just depends. You are in the early stage of diagnosis, and this was the hardest for me mentally. It does get better once they form a solid treatment plan. As Salamndra noted about choosing later. when I did have the choice between the two, my surgeon did say I could always decide mastectomy later. Best of luck to you, you will make the right choice for yourself, keep us posted!

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  • teriabbott
    teriabbott Member Posts: 7
    edited November 2018

    Hi, just wanted to share my experience. I had a small tumor that ended up being IDC. Since I was HER2+ I went ahead and had the bilateral with reconstruction, I had read there were higher rates of reoccurance when you are HER2+, I figured at least that would be one less place I could get cancer. It's been about a year and I don't regret my decsion.

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  • GattinaBella
    GattinaBella Member Posts: 5
    edited November 2018

    Thank you ladies - currently waiting for genetics and an appointment with a reconstruction surgeon. Best wishes -

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