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Topic: American Cancer Society Correction, But Still Very Encouraging

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Apr 21, 2020 12:11PM - edited Apr 21, 2020 12:28PM by Lea7777

Lea7777 wrote:

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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Apr 21, 2020 02:50PM Hannah1962 wrote:

Thank you for your post!

Dx 12/7/2018, ILC, Left, 1cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR-, HER2-
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May 17, 2020 01:57PM greenie wrote:

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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May 18, 2020 11:19PM Lea7777 wrote:


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.

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May 19, 2020 10:50PM greenie wrote:

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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