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Seahawk3
Seahawk3 Member Posts: 3
edited July 2016 in LCIS (Lobular Carcinoma In Situ)

I was dx'd with LCIS by needle biopsy inearly March. After going for several opinions with a variety of recommendations I've decided to have double mastectomy (sorry new here and don't know all the abbreviations ). I called surgeons office at the end of April but because of vacations and scheduling conflicts with surgeon and plastic surgeon the procedure can't be done until the end of June. I'm a complete wreck that I waited too long and should have had an excisional bx by now. Still have to wait 6 more weeks. Has anyone waited this long before doing anything?

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  • leaf
    leaf Member Posts: 8,188
    edited May 2016

    Of course! Probably the majority of classic LCIS women NEVER go on to get invasive breast cancer. You cannot die of LCIS. Only invasive breast cancer can spread (metastasize) to other parts of the body. For LCIS, the excision is to better make sure there isn't any invasive breast cancer hanging around the spot of LCIS.

    Most invasive breast cancer is relatively slow growing. Most people with invasive breast cancer can have up to several months to decide if they want chemotherapy. (And remember invasive breast cancer by definition can metastasize.) (Inflammatory breast cancer, a rare, unusual breast cancer, is an exception. You want to start treatment for inflammatory breast cancer as soon as possible.)

    Of course, not all invasive breast cancer metastasizes. They certainly don't know the entire picture, but they think that of the invasive breast cancer that does metastasize, it probably usually metastasizes years before the breast cancer can be detected by any means - feel a lump, mammography, sonogram, etc. Usually breast cancer takes some 5-10 years to be large enough to be detected by ANY means. If the breast cancer metastasizes, it usually metastasizes at about 2 years, several years before it can be detected.

    So it won't make a difference in your clinical picture. You may be mentally insane by the time you have your mastectomies, but it probably will make no difference in the clinical outcome.

    Best wishes.


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  • Seahawk3
    Seahawk3 Member Posts: 3
    edited May 2016

    Thanks for the response . I do have Classic LCIS which was the initial pathologist diagnosis, as well as the findings when slides were sent for a second opinion. "Classic type with low grade nuclei." I also had an MRI in February before my biopsy which was negative. I'm still waiting for my genetic test results... Hoping to have them this week. This diagnosis is so frustrating. Trying to stay busy.

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  • leaf
    leaf Member Posts: 8,188
    edited May 2016

    Yes, keeping busy is a good choice. A diagnosis of LCIS is not 'the end of the world', and its important to keep on living. That took me an awful long time (many, many years) to digest, but I have other issues too. Hang in there.

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  • SassyMutt
    SassyMutt Member Posts: 31
    edited May 2016

    Leaf always has wise advice and I agree with her! I was diagnosed with LCIS in fall of 2014. I, too, was a confused wreck. But I did a ton of reading and talked with good doctors.

    I waited two months before doing the excisional biopsy (lumpectomy) because I had a long-planned trip to Fiji and I didn't want to do it before I went. My docs felt it was fine to wait.

    Also, for what it's worth, my docs felt mastectomy would be too extreme in my case so I opted for Tamoxifin and six month screenings. It's been almost two years now and I'm much more comfortable with the diagnosis - tho I still get nervous at the six month checks. 😊 But so far so good!

    Best wishes to you

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  • laura_ingalls
    laura_ingalls Member Posts: 78
    edited June 2016

    hi ladies,

    i have IDC, ER+ (very strongly ER+) in the right breast and found out about the LCIS in the left breast just before starting chemo. they said there is hope i can keep the left (LCIS) breast and i really want to have more children and be able to nurse them.

    since starting chemo, i have felt pangs of pain in both breasts. i am so petrified i will lose the left side (the one with only LCIS).

    my chemo port is on the left side and i had a biopsy there about 1.5 months ago (that's how they found out it was LCIS)....anyone have any related experiences to share?

    i already had some pain in the right (IDC) breast before i was diagnosed with cancer and i had a lot of pain in the right breast after the initial biopsy!

    Dr. google told me it could be hormones...onco just told me not to worry.

    please share your experiences....

    *

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  • Kells
    Kells Member Posts: 9
    edited July 2016

    LCIS is not cancer. There isn't quite the rush as cancer.

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