American Cancer Society Correction, But Still Very Encouraging

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Lea7777
Lea7777 Member Posts: 274
edited September 2020 in LCIS (Lobular Carcinoma In Situ)

I was reading the American Cancer Society's "Breast Cancer Facts & Figures 2019-2020.

Full 38 page document linked here:

https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/breast-cancer-facts-and-figures/breast-cancer-facts-and-figures-2019-2020.pdf

I went to the LCIS section at the top of page 14. Text copied here:

"In contrast, LCIS is not generally considered a breast cancer precursor, but is associated with increased risk of developing breast cancer.A recent population-based study of women diagnosed with LCIS between 1983 and 2014 reported that the 10- and 20-year risk of being diagnosed with DCIS or an invasive breast cancer was 11% and 20%, respectively (endnote 71)."

It was this next statement that really got my attention.

"Notably, the study also reported that the 20-year breast cancer survival of those diagnosed with DCIS or invasive cancer exceeded 95%."

So, according to American Cancer Society, even if you get cancer after LCIS, you have a 95+% of surviving 20-years. Yes, that would be notable (if it were correct).

I went to endnote 71 which reads:

71. Wong SM, King T, Boileau JF, Barry WT, Gohshan M. Population-Based Analysis of Breast Cancer Incidence and Survival Outcomes in Women Diagnosed with Lobular Carcinoma In Situ.Ann Surg Oncol. 2017;24(9):2509-2517

I googled that study and here is the link to the abbreviated, one page version, available to me on the Internet.

https://www.ncbi.nlm.nih.gov/pubmed/28455673

The second and third to last sentences in that Wong study stated:

"On multivariable analysis, type of surgical treatment for LCIS had no affect (sic) on long-term survival (p = 0.44). The 10- and 20-year BCSS for women with LCIS was 98.9 and 96.3%, respectively."

Those are very encouraging survival rates for women with LCIS and they exceed 95%. But these rates are NOT specifically for women who end up actually getting breast cancer after being diagnosed with LCIS. The study language contradicts the ACS statement of:

"Notably, the study also reported that the 20-year breast cancer survival of those diagnosed with DCIS or invasive cancer exceeded 95%."

So I called up American Cancer Society and got a call back and a followup email. In keeping with my past experience with ACS, they were very professional, competent, knowledgeable, and prompt. I was told the notably comment in the publication was WRONG! ACS confirmed that the population with over a 95% 20-year survival rate is women with LCIS (some of whom will get cancer and some of whom will remain cancer-free); the population with over 95% 20-year survival rate is NOT women with LCIS who went on to develop breast cancer.

Unfortunately I was told no correction could be made, even in the online publication.

ACS has access to the more complete version of the studies than what I can get online.They sent me the 9-page detailed version of that Wong study that was referenced in endnote 71.

It included this hope-inspiring conclusion. "Women with LCIS who are diagnosed with a subsequent primary breast cancer are often diagnosed in early stages and have excellent BCSS."

But there were no numbers, no percentages of "excellent BCSS" AFTER a breast cancer diagnosis, preceded by LCIS.

I found the last sentence of this section of that 9-page report very interesting and encouraging.

"Coopey et al. reported a 32.4% probability of cancer at 10-years in LCIS patients receiving surveillance only compared with a 10.3% probability in those who received chemoprevention with tamoxifen, raloxifene, or exemestane.15 Another large cohort of 1060 LCIS patients from Memorial Sloan Kettering Cancer Center demonstrated a reduction in 10-year cumulative cancer rates, from 21 to 12%, with the use of chemoprevention. (endnote 9) In those patients who developed invasive cancers on these agents, all were stage 1, HR-positive tumors..."

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  • Hannah1962
    Hannah1962 Member Posts: 35
    edited April 2020

    Thank you for your post!

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  • greenie
    greenie Member Posts: 11
    edited May 2020

    Thank you so much for sharing this! Any chance you might be able and willing to post the full report that you received from ACS, or to share it with me directly? Thanks again!

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  • Lea7777
    Lea7777 Member Posts: 274
    edited May 2020


    The 9-page report I mentioned is a PDF with this title. Published 28 April 2017. ACS would send it to you. Or PM me. I am not able to post it here since it is not a link.

    image

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  • greenie
    greenie Member Posts: 11
    edited May 2020

    Thank you! With that title, i was able to get my mother in law to find it for me (she's associated with a teaching hospital). The Coopey report it cites is available in full online and together these articles give a pretty clear picture.

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  • wallycat
    wallycat Member Posts: 3,227
    edited June 2020

    Thank you for posting this but for myself, it is only more confusing.

    Since LCIS (or DCIS for that matter) are not considered cancer, I would think that if these women never developed breast cancer, they stand a 100% chance of survival (or dying from something else).

    The line I saw: "Notably, the study also reported that the 20-year breast cancer survival of those diagnosed with DCIS or invasive cancer exceeded 95%." gave me hope, but you are saying that is not accurate? Or am I misunderstand the reply the ACS sent you? As I read that sentence, I read : any women who had developed invasive cancer (and I presume they mean IDC) has a 95% chance of survival....no comment on the other stats of that cancer...?


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  • Lea7777
    Lea7777 Member Posts: 274
    edited June 2020

    Hi Wallycat. And what a pretty cat!

    If the person diagnosed with LCIS never developed breast cancer they would have a 100% chance of not dying in 20 years from breast cancer, like you state. Also because some of those subsequent diagnoses are DCIS (non-invasive), that also keeps the survival rate very high.

    But of those diagnosed with LCIS, some do get invasive breast cancer and live less than 20 years. Those are the people bringing the 100% down to 95%+ over 20 years. The 95%+ 20-year survival rate--or the under 5% rate of death over 20 years due to breast cancer--is made up of women who were originally diagnosed with LCIS.

    So that both you and I could be less confused, I wish the study showed over the 10-year and the 20-year periods, what percent of LCIS diagnoses ended up with DCIS and what was their survival percentage; and what percent of LCIS diagnoses ended up with Invasive cancer and what was their survival percentage.

    Here is a much less scientific analysis: I always ask the "breast professionals" I see how many women they have encountered with LCIS who have either developed Stage IV breast cancer or have died from breast cancer. None of the professionals has been able to cite even one woman. They have told me they can recall some DCISs, Stage 1s, and "maybe a Stage 2."

    I will be most interested in the next edition of this American Cancer Society document and the section on LCIS to see how they change or update the information.

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  • wallycat
    wallycat Member Posts: 3,227
    edited June 2020

    Lea, my girl-cat is now gone. She was pretty and sweet. It's been 2 years and I still look for her. Sigh.

    Appreciate your trying to unsnarl their statement. Yes, if you never get invasive cancer, then hopefully you get 100% survival from cancer, LOL.

    I too would like to know how many LCIS gals go on to develop ILC and what THEIR survival rates are...but maybe once we get ILC, we are lumped into a different category ....I'd like to think our pathology has some influence but it isn't very clear in that article that they looked at that. Always hopeful for a more thorough and clearer paper.

    Thanks.

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  • Lea7777
    Lea7777 Member Posts: 274
    edited June 2020

    Once we get ILC, we are lumped into a different category

    I think that is the issue. But your question of "how many LCIS gals go on to develop ILC and what THEIR survival rates are" is a PhD in the making!




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  • meow19
    meow19 Member Posts: 7
    edited August 2020

    "Very encouraging"???

    10 year risk of being diagnosed with breast cancer according to:

    The American Cancer Society and Susan G. Komen = 11%

    Memorial Sloan Kettering = 22%

    Coopey et al. = 32.4%

    Next year someone will say it's 50%.

    Anyway, which one should we believe? There's a giant difference between 11 and 32.4%

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  • Lea7777
    Lea7777 Member Posts: 274
    edited August 2020

    You're right, Meow19, on the varying stats of whether bc develops when atypia in the breast of any sort exists. The part of the report that I found encouraging was the odds of long-term survival after an LCIS diagnosis.

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  • meow19
    meow19 Member Posts: 7
    edited August 2020

    Maybe I'm missing something but I fail to understand how this is encouraging let alone very encouraging. If anything it is discouraging to say the least. Of course there is a 95% 20 year survival rate in women with LCIS who don't go on to develop cancer. LCIS isn't deadly and so if a woman with LCIS doesn't get cancer then she'll most likely live as long as any other woman unless she gets hit by a car or has some other illness or accident. The problem is that is not the reality if you look at the percentage of women with LCIS who get cancer. Let's say Coopey is right. Well then the 20 year risk of getting cancer is a freaking whopping 65%.

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  • Lea7777
    Lea7777 Member Posts: 274
    edited September 2020

    "Of course there is a 95% 20 year survival rate in women with LCIS who don't go on to develop cancer." Hopefully even higher than that!

    The 95+% survival rate contains the entire population of women diagnosed with LCIS.

    But here is something else I have been repeatedly told by numerous professionals in the breast cancer field from different institutions: The type of cancer that most women with LCIS get, especially post-menopausal women, is "more indolent" than others; is "less deadly" than others; and "most of the time can be completely cured." Those are the words used. I know because I write them down. "Completely cured" was used. None of those words are a guarantee and they obviously cannot apply to everyone. I don't know where you are on the pre- or post- menopausal spectrum either, which can make a difference.

    Going back to your comment of "which should we believe?" I share your exasperation and have asked the professionals that same question. I've posted on this site my dismay with the wide range of projections we find that can be life-altering for us when we rely on them. By the way, the answer I have gotten from the professionals when I ask what is the true cancer risk with LCIS is in the 20%-35% range. (Just reporting what I've been told.) Even when the Tyrer-Cuzick IBIS assessment tool that they administered comes back at 67% lifetime cancer risk, every "breast professional" has assured me that high # helps get and MRI through insurance, but the # is not accurate. Studies by Mayo support the inaccuracy of this model. Even a bunch of examples I did using the Tyrer-Cuzick IBIS model (and posted here in this subform) showed bizarre results. For example, if you have LCIS, your risk of bc goes DOWN if a bunch of relatives had breast and ovarian cancer compared to if the relatives were cancer-free. That's bizarre and cannot be.

    I also ask the all the "breast professionals" how often they have had an LCIS patient end up with Stage IV cancer or end up dead. So far 0. I realize that's anecdotal.

    So I'd call that hopeful, but in context. It'd be much better to have normal breasts.

    Good health to you.

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