just diagnosed with LCIS

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genie_grz
genie_grz Member Posts: 2
edited September 2016 in LCIS (Lobular Carcinoma In Situ)

I was diagnosed with LCIS referred to oncologist and surgeon. Oncologist said I can have excisional biopsy and take tamoxifen for 5 years and decreased chances by 40% of developing breast cancer or do mastectomy. I am overwhelmed and confused. not sure what to do I just keep thinking this crazy, any advice would be appreciated.

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  • Seahawk3
    Seahawk3 Member Posts: 3
    edited May 2016

    Hi. I sent you a private message. I'm new to these boards so I'm not sure if you are notified when you get a message. I was also just diagnosed with LCIS. Would love to talk to you .

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  • Wicked
    Wicked Member Posts: 141
    edited May 2016

    Also just diagnosed and have it in both breasts. Facing two lumpectomies and Tamoxifen, that is, if there's no invasive cancer lurking. Nice to see other newbies!

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

    No one can make this choice (mastectomies or not, or surveillance with or without antihormonals) for you, because we all have different circumstances, and have different feelings about each choice. Some people have some of their choices made for them (for example,my breast surgeon refused to do mastectomies on me.) Some people's insurance restricts them. Some people have different family histories, different personal histories, have seen first-hand what breast cancer, or mastectomies or both can be like. Some people have rotten family histories.

    Good news is, at least once you have excisions to help ensure you have no invasive cancer going on, you can really take your time (as in years/decades) in making this choice, unlike the people who have invasive breast cancer. If you choose antihormonals, you can stop taking them later if you choose.

    Different studies differ, but roughly 20% (range something like 5-40%) of women initially diagnosed with LCIS by needle biopsy (without DCIS or invasive breast cancer) get invasive breast cancer on excision. That means in about 80% of women initially diagnosed with LCIS by needle biopsy, they don't find any further DCIS or invasive breast cancer when they excise the area. I'd say 80% odds of not getting anything worse than LCIS are pretty good.

    I know the waiting is awful, but hang in there.

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited May 2016

    I agree with Leaf. You have time to get more information and information is power. Don't underestimate the power of a second opinion, either.

    Good luck, MsP

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  • genie_grz
    genie_grz Member Posts: 2
    edited June 2016

    thanks ladies very helpful info

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  • Momof6littles
    Momof6littles Member Posts: 184
    edited June 2016

    Hi new LCIS ladies! I was in your shoes several months ago. Leaf is very right when she spoke of all of the different components that affect our decisions in this diagnosis. I have a very strong family history, going back multiple generations on both sides. Three more family members (two cousins, one aunt) were recently diagnosed. I am premenopausal and have young children. These things and the time I spent caring for both of my parents when they were sick the first two years of my marriage, (they both passed away one year from each other) made me realize I didn't want to watch and wait. But that's me and my story. Someone on these boards said once (maybe it was leaf?) that we all have different histories and different futures that affect our decisions in cancer management.

    If all you have is LCIS, then you do typically have a lot of time to make your decision. I spoke with a woman recently who was diagnosed with LCIS 23 years ago. She had a long family history of breast and ovarian cancers. Back then double mastectomy was what they did straight away when you have a family history with LCIS. She wasn't ready for that so enrolled in a study that monitored the cellular changes in the breasts of women with high risk lesions to determine their personal risks. Over time, her risk went up and up. After 20 years she decided to have a double mastectomy. It was right around the time her sister died of cancer. She told me she was so relieved at that point not to have this hanging over her head. She was happy she didn't have the surgery 20 years ago. She just wasn't ready. But at some point that shifted. Her councel to me, which I thought was wise: if you are comfortable with the care you will receive in your high risk surveillance (you trust the doctors and imaging staff to read your films correctly, you trust pathology to read biopsies accurately), then try the surveillance with tamoxifen. I had the additional problem that I also had a family history of endometrial cancer so they rescinded the offer of tamoxifen. With my dense breasts and insurance limiting my access to university based cancer centers, I wasn't confident in my surveillance.

    So, with this personal story,I did opt for the prophylactic double mastectomy. My final pathology was just the LCIS. So I wasn't immediately doomed (and neither are you). I do now have the peace of mind I was after, but the surgery and recovery are the trade offs. For me it was worth it. But you are not me. So take time to think it through.

    I do think that the increased surveillance or double mastectomy are a ridiculous set of choices. Seriously, that's a huge gap. You'd think by now they would have a better way of determining which folks with LCIS are really at risk of cancer. Because many women who have LCIS never develop an invasive cancer. But there are those who do, and to dismiss LCIS is very detrimental. Hopefully over time this difficult diagnosis will be clearer

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

    I do think that the increased surveillance or double mastectomy are a ridiculous set of choices. Seriously, that's a huge gap. You'd think by now they would have a better way of determining which folks with LCIS are really at risk of cancer. Because many women who have LCIS never develop an invasive cancer. But there are those who do, and to dismiss LCIS is very detrimental. Hopefully over time this difficult diagnosis will be clearer.

    I agree increased surveillance or double mastectomy are ridiculous choices, and there is very little data. But LCIS affects few people, is not life threatening by itself, is almost impossible to study, and, in this era of decreased NIH funding, I'd rather the funds go to treatment of metastatic cancer or prevention; or basic science, where findings can have implications far beyond any that were imagined when the study was proposed or funded. LCIS is very difficult to study because you don't know where it is without a biopsy, which thereby either removes it or at least may alter it significantly with a nearby biopsy -- you don't know how large the LCIS area is without biopsying it. I'm sure there are other factors that haven't occurred to me.

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  • Jpicch
    Jpicch Member Posts: 14
    edited June 2016

    How are you doing in your recovery?

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  • Momof6littles
    Momof6littles Member Posts: 184
    edited June 2016

    I feel really good. The drains were pulled day 6. I have most of my range of motion back (absolutely do the stretches they give you). Only taking Motrin. Can drive. I did overdo it yesterday, so today took it easy. (hmm. Painting outside was not the best idea). Overall, it has been a lot less traumatic than I thought it would be. The worst part right now is the sensitivity in the area under my arms. So it's hard to wear a bra and light prosthetic for long. But that will get better.

    Thank you for asking.

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  • Kells
    Kells Member Posts: 9
    edited July 2016

    I don't not want to take tamoxifen personally. The side effects are too much for me. I don't feel like2 breasts are worth putting my entire body through those side effects. I wast old u can just monitor LCIS. I prefer to get each area removed with an excisional biopsy. At some point my breasts will look so bad from s many surgeries I plan on just doing a mastectomy with implant reconstruction. Just my personal approach.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2016

    Hi NYBird. My understanding is that pleomorphic LCIS is higher risk than "classic" LCIS. That is why the doc is telling you to go ahead and get the evaluation process going. Sorry you find yourself here

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2016

    There is a difference between pleomorphic calcifications(appearance/shape of calcifications) on imaging and pleomorphic pathology. Does that make sense?

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2016

    Having one doesn't mean you have the other.

    A biopsy because of pleomorphic calcifications can even be entirely benign

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  • cuddyclothes
    cuddyclothes Member Posts: 160
    edited September 2016

    Hi - I was diagnosed with LCIS last month after surgery in July. Before that, it was tests tests and more tests. Since I'd had cancer in my left breast, they removed the lesion, etc. from my right breast. I don't mind being monitored every six months, either by MRI or mammogram. As long as my insurance pays for it, it's okay.

    The cancer in my left breast was papillary, 1 cm., Oncoscore 3. I'm going to get a BRACA test to see more about my risk.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2016

    NY Bird-----generally they treat PLCIS more like DCIS (due to the pleomorphism, even though it is non-invasive, it is considered more serious than classic LCIS). That is probably why your doctor is asking you to not to "watch and wait", rather start the process of treatment now.

    Anne

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