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Curious about time to recurrence for Lobular (ILC)

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cyathea
cyathea Member Posts: 337

Hi there fellow lobular thrivers,

I was basically a De Novo Stage IV as I had progression shortly after I was diagnosed when I had just started neoadjuvant chemo. But I’m curious how long it was for others between their first diagnosis and recurrence to a distant (non-breast) metastasis.

My theory is that the statistics that are available now (from studies done years ago) aren’t a good measure for what average time to recurrence is now for lobular and/ or HER2+ tumors. Treatments are getting better, doctors are learning and prescribing better care, and patients have more information than ever before to be active in managing their cancer.

Progression from lobular cancer has tended to be different than progression from ductal tumors. Since we represent a smaller percentage of BC, there isn’t as much research. Maybe a little non-scientific survey would be encouraging. I’ve seen some profiles where there were three or more years before progression

So, how many progression-free years did you have? If you were De Novo, how many years until you had another metastasis in a different location?

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  • BevJen
    BevJen Member Posts: 2,341
    edited February 2022
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    Cyathea,

    I had my first progression three years after my initial diagnosis, but 2 1/2 years (about) after my treatment started. It was a single site progression. Then I went on letrozole and was disease free (supposedly) for 13 years before further progression.

  • nkb
    nkb Member Posts: 1,561
    edited February 2022
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    Cyathea- It was about 4.5 years before progression, but, I also think I had the cancer for years before it was confirmed- just had normal mammos except dense breasts . not until I started having lumps and they did a biopsy was it found. also the progression was found after shortness of breath on a hike in Yosemite- but, I had been on a trip to Peru and Chile 5 months before and was SOB there also- but, it was high elevation so we attributed it to that.

    Of course if I had been diagnosed at the first dense breast mammogram the stats would look very different. ILC is usually. larger, often bilateral and higher stage by the time it gets diagnosed.

    If you look at people's diagnosis in the stage IV threads- the majority have ILC- not sure how that could be, maybe they just live longer.

  • sunnidays
    sunnidays Member Posts: 161
    edited February 2022
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    7 years for me, but I suspect I had the bone mets from the beginning they just weren't found on the other hand I could be compleatley wrong about that I just don't know.

  • agapewins
    agapewins Member Posts: 4
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    It was 17 years for me. Initially diagnosed 2005, stage 1. Bi- lat mastectomy, no nodes involved. 5 years of hormonal therapy. Disease free until 8/22 with 2 spots on chest wall. Radiation for about a month but declined hormonal therapy again due to osteoporosis. Opted for a holistic approach of high dose, vitamin C infusions.

  • cyathea
    cyathea Member Posts: 337
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    @agapewins 17 years is so encouraging! Thanks for sharing. I hope there are many others who join you in that milestone. I think the early stage discovery is critically important in achieving longer times to progression. I tried my best to be vigilant but LBC was still found late for me. Even though advocacy wasn’t necessary in my case, I still support those who do this important work to save lives and give cancer thrivers more time.

  • mandalynn
    mandalynn Member Posts: 22
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    I was 15 years. First diagnosed in 2008 as grade IIIa (or maybe c?). Then 15 years later stage IV with bone Mets everywhere. Was on tamoxifen for 5 years then letrizole for 7 then nothing for 3 then Mets currently on Letrozole Xgeva and trying to fo Kisquali but having trouble with blood counts. However, tumor markers went way down.

  • claireinaz
    claireinaz Member Posts: 691
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    12.5 for me, and I was still on an AI. My MO tells me she thinks I probably had it longer but the AI was working, and then the c found its way around it. No way of telling. I had 6 positive nodes so I was high risk, but it was and is still a shock. She told me the current dx of this recurrence is that it's grade II so I'm encouraged by that and hope that it behaves like ILC typically does—slower growth. Who knows. Now I've just got my hands full taking meds and keeping my head and spirit together.