Letrozole as a primary systemic treatment

I_Love_Letrozol
I_Love_Letrozol Member Posts: 3
edited May 2017 in ILC (Invasive Lobular Carcinoma)
Dear Reader,

Aloha. I am a 55-year old psychologist from Honolulu diagnosed with Invasive Lobular Carcinoma (ILC) in late February 2015.

At the time, my tumor was too large for surgery that would allow conservation of the breast (i. e., lumpectomy), so my surgeon suggested that I undergo pre-surgical treatment to shrink the growth.

Based on my research into the type of breast cancer that I have (i.e., slow-growing, estrogen-dependent, Luminal A) and its most effective treatment, I opted for endocrine therapy--rather than the standard and much more toxic form of chemotherapy that is typically prescribed.

Endocrine therapy consists of taking one 2.5 mg pill per day of Letrozole, an aromatase inhibitor that blocks the production of estrogen by the adrenal glands. The side effects include those typically experienced during menopause (e.g., hot-flashes) and are generally mild.

I have had no sign of cancer for each of the three 6-month post-treatment MRIs--and have opted to go forward without surgery, radiation, or chemotherapy. I actively observe further development of the disease via MRI.

Letrozole is used as both a preventative and curative agent. As such, I doubt the cancer will return in time to effect my mortality. I'm hopeful that further research into and the application of targeted/tailored hormone treatments will promote the longevity of those of us with ILC, and also lessen the unnessesary suffering associated with many of its "standard treatments."
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Comments

  • Leslie13
    Leslie13 Member Posts: 202
    edited May 2017

    Were you diagnosed with lobular breast cancer? What size was the original tumor? Endocrine therapy alone usually isn't enough for our type of cancer. It can become hormone resistant. It slowed down my progression, but didn't stop it. And how long will your Insurance pay for expensive screenings? I'm getting the impression that after your first NED scans post-treatment, you may get a scan once a year thereafter. Honestly, with ILC, a BMX is often the only way to slow it down.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited May 2017

    At the cancer center where I’m treated, there is a clinical trial of neo-adjuvant Letrozole (no chemo, and before surgery & radiation) for node-negative Stage II IDC patients. Not sure if ILC is included among the study cohort.

    What stage and grade was your ILC at diagnosis? From your description, it’s ER+ (what about PR?) and HER2-. Is that correct? Was there an Oncotype DX done (sometimes, a biopsy can yield enough tumor tissue to test without having to have the tumor removed for testing), and if so, what was your score?

    Is your care team in agreement with your plan of semi-annual active surveillance in lieu of surgery?

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  • I_Love_Letrozol
    I_Love_Letrozol Member Posts: 3
    edited May 2017

    Hi! I think it's wonderful that trials are ongoing in the neoadjuvant, primary, and prevention treatment settings with Letrozole. It has been a miracle drug for me. My treatment team suggested 'standard of care' approaches: surgery, radiation, chemo--despite the lack of a distinct tumor to target post-6 months of Letrozole, and despite the lack of genomic testing on the tumor that was Luminal A: er+, pr+, her-. No grade/stage, because no surgery

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  • I_Love_Letrozol
    I_Love_Letrozol Member Posts: 3
    edited May 2017

    Hi Leslie,

    Thank you for writing. The tumor was huge: 4.5 x 4.0. It completely dissolved with the neoadjuvant endocrine treatment and, I suspect, that if there was any metastasis, it did, as well. I think it makes sense to offer women with ER+ cancer the option to treat slow-growing cancers (like ILC) with primary, non-toxic, and systemic treatments as a start. If it doesn't work--and we can clearly see when it doesn't--than other--more toxic and invasive--treatments could later be applied.

    Aloha, Mary

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2017

    HI ILL, it's interesting to me--this thread--to see all the different ways we can feel comfortable about our own treatment. For me I would be a psychological mess if I had agreed to the treatment that seems to be working great for you--I wanted everything I could get, knowing that my risk in that tx path was low, and knowing enough about my own resilience that I could handle it all. What I do hear on this thread are women who have armed themselves with as much information about our specific dx and are getting the treatment that we are comfortable with, and that's a positive.

    Claire in AZ

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  • lrwells50
    lrwells50 Member Posts: 254
    edited May 2017

    The problem I see with this approach, is that although my tumor was small, 1.2 cm, it was more aggressive than originally thought. Although highly ER positive, it was very weakly PR positive, and HER negative. I think the weak PR accounts for my OncotypeDx of 24, when the BS said he was sure no chemo. Wish I had been the norm, but knowing two MOs and my radiologist friend that found the cancer recommended chemo and doing some research myself, I decided chemo was the way to go. can't say I'm happy about it, but I'll not worry for the next however many years that I could have done more

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  • 9lives70
    9lives70 Member Posts: 127
    edited May 2017


    Hi there.

    Thanks for sharing your protocol I am glad it's working out well so far! You are correct in that chemo is not effective on luminal A cancers:)))

    Were you post menopausal when you started the letrozole?

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  • 9lives70
    9lives70 Member Posts: 127
    edited May 2017


    Hi there.

    Thanks for sharing your protocol I am glad it's working out well so far! You are correct in that chemo is not effective on luminal A cancers:)))

    Were you post menopausal when you started the letrozole?

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  • JSwan
    JSwan Member Posts: 81
    edited May 2017

    Based on my own experience I would strongly discourage anyone from forgoing surgery after neoadjuvant therapy. I took anastrozole for a year prior to surgery and the MRI I had just prior to surgery showed that I was completely cancer free -- the entire tumor gone. It turned out, however, that I had 2.2cm of residual disease and was node positive. I am very glad that I did the neoadjuvant therapy because it enabled me to have a lumpectomy instead of a mastectomy but I am also very glad that I had the surgery, which to my medical team and me was a no-brainer. I also learned not to place too much confidence in MRIs.

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  • trinigirl50
    trinigirl50 Member Posts: 343
    edited May 2017

    Hi 9lives70 I have also read posts from quite a few luminal A women stating that chemo did shrink their tumours (neo adjuvant chemo). I also read quite a few where it was ineffective. So it seems to me that saying it is ineffective is too much of a blanket statement.


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