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Curious about time to recurrence for Lobular (ILC)

cyathea
cyathea Member Posts: 324

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?

Comments

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

    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

    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: 152
    edited February 2022

    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.