Surveillance of LCIS, in hopes of treatment breakthrough

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Lea7777
Lea7777 Member Posts: 274
edited May 2018 in LCIS (Lobular Carcinoma In Situ)

Are any of you with LCIS hoping you can hang on to your cancer-free breasts until there is a breakthrough in treatment or management?

As an example, for years, a topical tamoxifen gel has been studied. Right now there are Phase 2 clinical studies at Northwestern with Phase 3 to begin soon. I even called about joining their study but did not meet the criteria. The current studies are for those with DCIS and for women 40-55 with dense breasts (prevention perhaps). The first reports of the concept of "Tamogel" were way back in 2004. Slow progress.

Since the drugs have not gone well so far for me and my life would be pretty much ruined on them, I can't consider the Aromatase Inhibitors to be the breakthrough I was hoping for. At least not for me.

I asked my breast surgeon what sorts of promising new possibilities have been discussed in the conferences she has attended or in her professional journals. Her response was lifestyle (diet and exercise and maintaining a healthy weight) is the new big thing. Funny, that's nothing new at all. But maybe there will be actual studies correlating minutes of exercise per day/week or certain foods/herbs with breast cancer reduction. Or molecular tests of cells to predict whether they will be invaded by cancer. Or....

Not sure how long I'll be able to wait and surveil, but I'm hoping long enough for something better.

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  • poppyseed67
    poppyseed67 Member Posts: 13
    edited May 2018

    I was just diagnosed and this thought occurred to me, too...to hang on until treatment changes (either for LCIS or for breast cancer, should that develop -- I hope not!). I am still in the information gathering phase so I have not started any drugs. My diet has been pretty clean for years (very little sugar, no alcohol, gluten-free, I tend to cook my own food) so all I can do is exercise more...which would be a good thing anyway but who knows if it's enough to radically lower my lifetime risk of developing cancer (estimated to be quite high).

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  • light1candle
    light1candle Member Posts: 79
    edited May 2018

    I have too have noticed a new emphasis from health care providers for risk reduction through "lifestyle modification". I was diagnosed with LCIS in the summer of 2017 and my own BS really pushed taking an aromatase inhibitor for risk prevention. (I was reluctant because of other health factors which the AI's could have exacerbated.) Last fall I had a second opinion appointment with the "high risk" doctor at my local NCI-designated cancer center. She agreed that I was not currently a good candidate for tamox or the AI's, but suggested that I should work to get my body mass index down (lose weight). Funny story - at that same appointment, someone entering my data into my health record transposed the numbers in my weight, turning 195 lbs. into 159 lbs. PRESTO! -- instant BMI reduction!! Ha! If only it was that easy...

    Lea7777 - I saw the early information about Tamogel, too, and thought that was encouraging. I like the idea of keeping most of the the drug interaction in the breast where it is applied to try to cut down on systemic side effects. I also noted some studies in the literature showing that ultra-low oral doses of tamoxifen (like 2 or 5mg, instead of 20mg) may be as effective for prevention as the higher doses, but with fewer side effects. But these studies seem old and nothing new seems to be in the works in this area as far as I can tell.

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  • Lea7777
    Lea7777 Member Posts: 274
    edited May 2018

    I have asked 2 oncologists and a breast surgeon about breakthroughs on the horizon and they said they know of nothing, besides that comment on lifestyle. In fact, they were not aware of these particular studies mentioned in my question here.

    Any big breakthroughs just around the corner such as:

    ~Detecting tumors before they become cancer?

    ~Topical treatments for those at high risk or breast injections for those at high risk?

    • Northwestern University is doing trials of topical Tamoxifen for dense breasts. I am not eligible.
    • China did topical Letrozole studies in 2010.Don't know what happened since.
    • Germany is doing topical trials similar to Northwestern now.

    ~Molecular tests for LCIS to determine risk for invasive cancer?

    ~Something else that would make holding off on PBMX for LCIS a wise choice?

    Back to lifestyle--all of the experts said there were currently no concrete studies on exercise or diet reducing the risk in those with LCIS or atypia.

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