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Just diagnosed

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I, despite knowing I should have a mammogram earlier, had my first one last month at age 50. I have dense breasts, which I knew already of course. They saw an area on the mammogram they wanted to do a needle biopsy of, which came back with LCIS. I have an MRI scheduled for Monday (they will draw blood for genetic testing at that time too), and a consultation on Wednesday for surgical excision of the area. Yesterday I had a risk assessment consultation, which was, honestly, a bit of a shock to me. My lifetime risk of being diagnosed with BC is 69.5%, with a 10 year risk at 23%. Some of this is due to my aunt having had BC at 48, my early first menstruation, dense breasts, etc. She did mention to take the % risk with a grain of salt, as they can be + or - 20% variance.

I'm sure the surgeon will talk about a double mastectomy option. The nurse I spoke with mentioned they would start to consider this option with risk greater than 40% lifetime.

They are also referring me to a local oncology group that has a high risk breast cancer center. She mentioned the 5 year drug (my googling suggests this would likely be tamoxifen) that they could prescribe.

The nurse also mentioned I would be doing breast screening MRI alternating with mammogram every 6 months.

There is still a lot I need to find out. MRI results (which will be discussed with me on Monday following the procedure), genetic testing results (she was going to rush the BC portions, so about 10 days), and of course, results after the excision.

What questions do I need to be asking as I go through this phase? What type of LCIS I have?

Thank you!

Comments

  • needs.a.nap
    needs.a.nap Member Posts: 168
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    Hello @stacy29 and welcome here. That’s an awful lot for you to take in all at once. I’m really sorry! I’m not as familiar with LCIS (besides reading the basics) so I cannot say much about it … but I still wanted to say hi. I hope your MRI goes well. Hang in there!!!

  • moderators
    moderators Posts: 7,915
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    @stacy29 - Welcome to Breastcancer.org. We're sorry this had to happen, but you've found a great place for information and a place to vent and share.

    While you wait for upcoming tests and appointments, here are some of our articles that may help you: Treatment of LCIS, and Mastectomy, specifically this page on deciding factors.

    We hope this information helps you make the right choices together with your healthcare team. Please feel free to reach out if you have questions or need further information, and post again to let us know how it goes at your next appointments!

    Warm regards,

    The Mods

  • stacy29
    stacy29 Member Posts: 3
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    Thank you for the welcome!

    MRI went fairly well yesterday. There was one small spot they want to do an MRI guided biopsy on, but everything else looked good. Took the genetic test, and should have breast portion results from that in about 10 days. I have a consultation tomorrow with the surgeon about excising the area of the first biopsy that showed LCIS. I'm slowly learning more about what my future holds. Thank you for the help!

  • needs.a.nap
    needs.a.nap Member Posts: 168
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    Dear @stacy29. Everything is in motion for you which is good! You should get some helpful information at your appointment tomorrow. I know this initial part of waiting for each appointment, test and result isn’t easy but you will gradually get a clear picture and be able to make good decisions. It takes time to digest and process it all … I’m still processing it months later!

  • stacy29
    stacy29 Member Posts: 3
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    My MRI biopsy showed no cancer, but oh boy, that was a horrible experience I hope to not have to repeat. A week ago I had my excision surgery for the area of LCIS. The procedure went well, and healing has been good. No cancer found, however the surgeon said that he kept finding more LCIS areas while clearing the margins, and he believes my whole left breast (and likely my right, though unknown for sure) is full of it. The high risk breast cancer center I have been referred to said they do not recommend mastectomy and have proscribed tamoxifen for the next 5 years, and screenings every 6 months. I'm not sure at this point how I feel about that. The tamoxifen reduces my risk to 35% (half) which is still high.

  • moderators
    moderators Posts: 7,915
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    We're glad to hear that the results came back favorable, @stacy29! But that does sound like an overwhelming experience, and you have a lot to process and think through. Don't hesitate to get a second opinion if you want to explore what other options might be available to you!

    The Mods