Part I: Not all DCIS is "Risky"
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Ductal carcinoma in situ (DCIS) is considered the earliest form of breast cancer and noninvasive, meaning it hasn't spread out of the milk duct and has a low risk of becoming invasive. In part 1 of the DCIS webinar series, you will learn about different types and grades of DCIS and why that is important. The grade of a cancer describes how the cells look and how quickly they grow compared with normal cells. It also indicates how likely it is to develop into an invasive cancer. There is no one-size-fits-all treatment plan for DCIS. Our speaker, Deborah Collyar, a DCIS survivor, author, and President of Patient Advocates In Research (PAIR) will discuss the specific factors needed as you consider treatment options vs active monitoring.
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Part I: Not all DCIS is "Risky"
- 1. © Patient Advocates In Research (PAIR) Deborah Collyar President, Patient Advocates in Research Part 1: Not all DCIS is risky SHARE Educational Program January 9, 2024 Part 2 will be on February 6, 2024 “DCIS Latest Research: De-escalating the Fear of Recurrence”
- 2. © Patient Advocates In Research (PAIR) What do people want to know about DCIS? • Why so many opinions: Aren’t there standards for DCIS? • Is DCIS cancer or not? • Will it come back? If so, will I die? • What type of treatment should I consider? Adapted from Liz Frank, Dana-Farber Cancer Institute, and 2021 SHARE DCIS Webinar • What is risk about? • Why am I being referred to cancer doctors? • Are my family members at risk? • Why is this so confusing?
- 3. © Patient Advocates In Research (PAIR) Misunderstandings are common • People often hear about DCIS through varied sources • Media, prior DCIS patients, message boards, blogs, anecdotes, etc. • Celebrity sources often mix up DCIS with invasive cancer • Some healthcare providers lead with opinions unrelated to research • Reliable sources (e.g., radiologists, surgeons, oncologists) • Can set fearful mindsets • We’re working on better communication • DCIS may be a person’s first experience with the “cancer” world • https://en.wikipedia.org/wiki/Misinformation • https://www.padf.org/covid-19/covid-awareness/ COVID examples…
- 4. © Patient Advocates In Research (PAIR) Ductal carcinoma in situ (DCIS) is… A breast condition that includes abnormal cells that stay inside the milk duct. Carcinoma/cancer: disease in which some of the body’s cells grow uncontrollably and can spread to other parts of the body By Cancer Research UK - Original email from CRUK, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=34333197 • https://www.cancer.gov/about-cancer/understanding/what-is-cancer • https://www.slideshare.net/doctorbobm/dcis-breast-cancer-30985400#10 DCIS has many names: • Pre-invasive tumor/lesion • Pre-cancerous tumor/lesion • Non-cancerous tumor/lesion • Non-invasive breast cancer • Intraductal carcinoma • “Non-obligate pre-cursor” to breast cancer • Stage 0 breast cancer • Breast disease or condition
- 5. © Patient Advocates In Research (PAIR) Poll question #1 What sounds better to you? 1. Non-cancerous lesion 2. Stage 0 breast cancer 3. Abnormal cells that look like cancer 4. Pre-cancerous lesion 5. A “non-obligate pre-cursor” to breast cancer 6. Non-invasive breast cancer 7. Breast disease
- 6. © Patient Advocates In Research (PAIR) DCIS in perspective: Most live longer than general population • DCIS Dilemmas eBook 2015 • https://pubmed.ncbi.nlm.nih.gov/10761960/ DCIS: Ductal Carcinoma In Situ IBC: Invasive Breast Cancer “Among women diagnosed with DCIS, risk of death from breast cancer was low, at least within the 10 years following diagnosis. This may reflect the effectiveness of treatment for DCIS, the "benign" nature of DCIS, or both. At 10 years… their risk of dying of all causes combined was lower than that in the general population.”
- 7. © Patient Advocates In Research (PAIR) Ductal Carcinoma In Situ (DCIS) is still confusing! A person with abnormal finding Doctors who diagnose Doctors who treat Research: all kinds Clinical guidelines Risk tests, commercial products Decisions & treatment(s) Life w/DCIS Screening At least 75 breast diseases/conditions https://bit.ly/3cYiigu Misunderstanding (internet, social media, etc.) Mixed messages
- 8. © Patient Advocates In Research (PAIR) 1980 1983 1985 1987 1989 1991 0 5 10 15 20 25 Thousands DCIS # of MMG Machines 1 in 1300 screening MMG diagnose DCIS DCIS = unintended consequence of increased screening DCIS increased with mammography machines (~80% is detected by mammogram) Courtesy of Shelley Hwang, MD, Duke University
- 9. © Patient Advocates In Research (PAIR) More breast cancer More DCIS No change in overall deaths This means Screening results? ‘Over-treatment’ for many (3 in 10 estimated)* * 2017 University of Oslo
- 10. © Patient Advocates In Research (PAIR) Screening Screening: different than diagnostic mammograms • https://www.cancer.gov/types/breast/patient/breast-screening-pdq • https://www.rahwaynj.gov/ImageRepository/Document?documentID=892 • https://www.acr.org/-/media/ACR/Files/Practice-Parameters/Screen-Diag-Mammo.pdf • Before symptoms • Used in populations • Can find abnormal cells or very small cancer • Calcifications can be benign, DCIS, or invasive breast cancer • Can lead to diagnostic mammogram
- 11. © Patient Advocates In Research (PAIR) Diagnostic • After screening if signs or symptoms of breast condition • More images & magnified • Can also include: •Computed tomography (CT) •Digital breast tomosynthesis (DBT/3D) •Magnetic resonance (MR/MRI) •Positron emission tomography/ computed tomography (PET/CT) •Ultrasound (US) Screening Screening: different than diagnostic mammograms • Before symptoms • Used in populations • Can find abnormal cells or very small cancer • Can lead to diagnostic mammogram • https://www.cancer.gov/types/breast/patient/breast-screening-pdq • https://www.rahwaynj.gov/ImageRepository/Document?documentID=892 • https://www.acr.org/-/media/ACR/Files/Practice-Parameters/Screen-Diag-Mammo.pdf
- 12. © Patient Advocates In Research (PAIR) DCIS is found with a biopsy • Biopsy collects small sample of breast tissue • Pathologist examines sample & writes a report with diagnosis • Lesion/tumor can be benign or malignant • Report includes: o Type of condition (DCIS, LCIS, invasive, etc.) o Grade (growth rate: slow, fast, etc.) o Hormone receptor status (ER/PR) o HER2 receptor status (HER2) • There are some standards, but reports, diagnoses, and hospitals can vary greatly • 2023 DCIS Patient Forum, Dana Farber Cancer Institute, https://www.youtube.com/watch?v=qEzgMl9sNdA • https://simbiosys.com
- 13. © Patient Advocates In Research (PAIR) What is DCIS? It depends… Low risk Not low risk Grade 2 Grade 1 Grade 3 Slower growth Cells look normal to abnormal Rapid growth Cells in different sizes & shapes Often has ‘comedo necrosis’ (dead cancer cells) “…more what you'd call (pathology) guidelines than actual rules.” - Barbossa, Pirates of the Caribbean • https://www.iheartpathology.net/post/breast-dcis
- 14. © Patient Advocates In Research (PAIR) More on DCIS grades Different grades & structures • In general, o Grade 1 (14.3%) • Slow-growing, smaller, ER/PR+, HER2- o Grade 2 (43.4%) • Varies, in between grades 1 & 3 o Grade 3 (42.3%) • Larger, grows faster, more ER/PR-, HER2+, Comedo necrosis (dead cells, higher risk) “… a large proportion of DCIS… is mixed, which is difficult to categorize.” – D. Craig Allred, 2010 • https://academic.oup.com/jncimono/article/2010/41/134/890446 • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6679771/ A second pathology opinion may help.
- 15. © Patient Advocates In Research (PAIR) Note: DCIS is different with “microinvasion” DCIS w/microinvasion is often called • Stage 1 invasive breast cancer (IBC) - or - DCIS with microinvasion o Considered to be Stage 1 IBC • If invasive breast cancer is found, surrounded by DCIS • All are treated as Stage 1 IBC No further discussion in this webinar • https://en.wikipedia.org/wiki/Ductal_carcinoma_in_situ • College of American Pathologists: https://documents.cap.org/protocols/Breast.DCIS_4.4.0.0.REL_CAPCP.pdf Stage 1 invasive breast cancer (IBC) Image annotation by Mikael Häggström, MD, using source image from: Moatasim A, Mamoon N (2022).
- 16. © Patient Advocates In Research (PAIR) Poll question #2 What type of DCIS have you had? 1. Low grade DCIS 2. Intermediate grade DCIS 3. High grade DCIS 4. DCIS + invasive breast cancer 5. I have not had DCIS 6. I’m not sure
- 17. © Patient Advocates In Research (PAIR) LCIS Atypical Ductal Hyperplasia (ADH) Sclerosing adenosis DCIS In the milk gland In the milk duct Benign growth In the milk duct Why is DCIS treated more like invasive breast cancer and these other conditions are not? • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5932853/ • https://bit.ly/3f0UuLy • https://www.melbournebreastcancersurgery.com.au/wp-content/themes/ypo-theme/images/ductal-carcinoma-in-situ-dcis-img-8.jpg Cancer cells inside Cancer cells inside Arbitrarily defined as ≤ 2 mm
- 18. © Patient Advocates In Research (PAIR) • m Grade 1 5 % risk @ 10 years Grade 3 19% risk @ 10 years Grade 2 DCIS biology: all DCIS is not the same! NORMAL BREAST DUCT DCIS A potential precursor of breast cancer ? DEVELOPS INTO BREASTCANCER REMAINS DCIS Sagara Y et al JAMA Surg 2015, https://pubmed.ncbi.nlm.nih.gov/26039049/ 10-year Survival • Surgery: 98.8% • No surgery: 98.6% All Grades
- 19. © Patient Advocates In Research (PAIR) Low/Grade 1 • Active Monitoring/Surveillance (being studied) • Surgery (lumpectomy, sometimes mastectomy) • Endocrine/hormonal therapy (optional) • Radiation (optional) • Diet/exercise (optional) Intermediate/Grade 2 High/Grade 3 Treatment options for DCIS (based on many studies) • Surgery (lumpectomy or mastectomy) • Endocrine/hormonal therapy (optional) • Radiation (optional) • Diet/exercise (optional) • Radiation can lower risk for local future DCIS or IBC, but not survival • Hormonal therapy: tamoxifen (pre-menopausal) or aromatase inhibitor (post-menopausal) • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6414216/pdf/nihms-1001707.pdf • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7382977/pdf/nihms-1554678.pdf • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6797705/ Risk factors exist for all treatments Similar survival rates for lumpectomy and mastectomy • Find IBC at surgery 17% of the time • Active Monitoring/Surveillance (being studied) • Surgery (lumpectomy, sometimes mastectomy) • Endocrine/hormonal therapy (optional) • Radiation (optional) • Diet/exercise (optional)
- 20. © Patient Advocates In Research (PAIR) DCIS is not an emergency There is no “right” answer Treatment is often more about personal preference: • Active Monitoring • Surgery • Radiation • Hormonal therapy • Reconstruction You have time to decide!
- 21. © Patient Advocates In Research (PAIR) • Many patients have uncertainty, fear, concern over side effects, loss of control and anxiety • Confused to see cancer doctors and hear cancer terms instead of breast • Financial concerns, e.g., • Co-pays, deductibles, missed work-time may add to emotional burden • Patients worry if they are “true cancer survivors” • Sometimes ridiculed by other patients • What is the right treatment decision? • Too much treatment vs. too little treatment DCIS is different for every body and medical communities need to better explain it! https://rlv.zcache.com/psychologically_scarred_postcard- ref6328ebb40441a6a6687bfb877b78b9_vgbaq_8byvr_630.jpg?view_padding=[285%2C0%2C285%2C0]
- 22. © Patient Advocates In Research (PAIR) For “low risk” DCIS… “Generally, low and intermediate grades (Grades I and 2) are considered to be “low risk,” with the lowest chance of becoming an invasive cancer or of recurrence. There is increasing scientific evidence that low-risk DCIS grows slowly and if left untreated, most would not cause health problems during a woman’s lifetime.” Violet Merle McIntosh, MD, Chief of breast surgery at Englewood Health, New Jersey https://www.englewoodhealth.org/comet-clinical-trial-an-option-for-patients-with-low-risk-dcis-available-at-englewood-health Other factors considered for “low risk” DCIS: • ER/PR+ • HER2- • Postmenopausal (+ 50 years old)
- 23. © Patient Advocates In Research (PAIR) LORIS COMET LORD LORETTA Country UK US Netherlands Japan Age >48 >40 >45 >40, <75 Design/ standards of care RCT/ local care RCT/guideline concordant RCT/ local care Pt preference Single arm Endocrine therapy Possible Possible Not allowed Tamoxifen Primary outcome 10 years 2, 5, 7 years 10 years 5, 10 years Opened 2014/2016 2017 2017/2021 2017 Sites open 63/63 82 (+17)/100 36/? 43/43 Number of patients 188 997 73/800+ ongoing Target 932; closed 900+; closed 1240/2500 340 Low-risk DCIS “active monitoring” trials Waiting for future breast events before results might change clinical practice!
- 24. © Patient Advocates In Research (PAIR) COMET Study Patient Leadership Team Words Matter! • Need updated descriptions • Need updated mindsets
- 25. © Patient Advocates In Research (PAIR) Changing language & mindsets for low-risk DCIS • https://cometstudy.org • https://dcisoptions.org
- 26. © Patient Advocates In Research (PAIR) Changing language & mindsets: • PRECISION Patient Advocate Involvement Panel, https://www.dcisprecision.org
- 27. © Patient Advocates In Research (PAIR) © Patient Advocates In Research (PAIR) Finding DCIS by palpation (by feel) High grade DCIS (Grade 3) Unclear margins (>2mm for DCIS) DCIS size (studies vary) Being pre-menopausal (monthly periods) African-American ancestry High level of p16 marker Less access to medical system Genetic marker: BRCA, etc. What factors add to a 10-year risk of invasive breast cancer (IBC)? Treatment recommended for grade 3 Visser et al. Cancer Epidemiol Biomarkers Prev 2019, others Renée S J M Schmitz et al. BMJ 2023;383:bmj-2023-076022
- 28. © Patient Advocates In Research (PAIR) Breast DCIS Score (OncotypeDX) • Based on DCIS and invasive breast cancer; tumor only • Predicts 10-year risk of recurrence • Benefits v. risks of radiation therapy DCISionRT (PreludeDx) • Based on DCIS only; tumor + stroma (communicators) • Predicts an individual’s 10-year risk of recurrence • Predicts an individual’s benefit of radiation therapy • Can reclassify up to 50% v. grade and size Current tests for grade 3 (high grade) DCIS: https://preludedx.com/ https://preludedx.com/publications/ https://bit.ly/3c25SVM NOTE: There is a difference between relative risks and absolute risks! See Cancer Risks: What They Mean https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20044092
- 29. © Patient Advocates In Research (PAIR) DCIS is becoming clearer with clinical trials & other study results • Stay informed (https://www.dcisprecision.org/, http://cometstudy.org/ (coming soon), https://dcisoptions.org/, dcis411.com, etc.) • Give us feedback If you have/get DCIS • You have TIME • It’s a trade-off between future risk v. treatment effects: use decision tools • Patient/provider communication is important • Ask about resources you can use Takeaway messages
- 30. © Patient Advocates In Research (PAIR) DCIS Latest Research: De- escalating the Fear of Recurrence Please join us on February 6, 2024 Deborah Collyar Patient Advocates in Research Shelley Hwang, MD Duke University
- 31. © Patient Advocates In Research (PAIR) © Patient Advocates In Research (PAIR) Discussion time
- 32. © Patient Advocates In Research (PAIR) Poll question #3 Do you feel less anxious after hearing this program? 1. Yes 2. No 3. No change 4. Unsure
- 33. © Patient Advocates In Research (PAIR) Resources (a few examples) SHARE services & materials (e.g. Novela in English & Spanish) • 2021 SHARE DCIS webinar: What we Know & Don’t YET Know about DCIS • https://www.sharecancersupport.org • https://www.sharecancersupport.org/wp-content/uploads/sites/1731/2016/04/Be_Brave_They_re_Your_Breasts_en-us.pdf Ideas for 2nd opinions • NCCN approved cancer centers: https://www.nccn.org/members/network.aspx • ORIEN cancer centers: https://www.oriencancer.org/ • Check your local hospitals DCIS resources • https://www.macmillan.org.uk/cancer-information-and-support/breast-cancer/ductal-carcinoma-in-situ-dcis • https://www.breastcancer.org/symptoms/types/dcis • https://dcisoptions.org • https://www.lbbc.org/news-opinion/understanding-dcis • PRECISION research: https://www.dcisprecision.org/ • COMET study: https://cometstudy.org • Ebook: DCIS Dilemmas at https://amzn.to/3s799Zz • For Active Monitoring: https://dcis411.com/resources/dcis-411-wellness-checklist/ • Check your local hospitals for Social Workers and possible support groups
- 34. © Patient Advocates In Research (PAIR) Deborah Collyar deborah@tumortime.com https://collyar.wordpress.com/ www.facebook.com/DeborahCollyarAuthor @deborahcollyar www.linkedin.com/in/deborahcollyar/ Thank you! Keep in touch Where research meets reality Patient Advocates In Research (PAIR)
Editor's Notes
- A diagnosis of DCIS can be very confusing. All the words a person hears sound like “cancer” but you may be told you don’t really have cancer. If it’s not really cancer, that it’s not a single disease, but a heterogenous condition that conveys varying level of risks, that we don’t really know the likelihood that it will come back, and most importantly, that they are very unlikely to die because of it. It is also not uncommon for patients to be concerned that it’s one of those conditions that might affect other members of their family. Confusion is not something that anyone likes, especially for something that feels like threatening.
- Thousands of women looking for info and not just from medical sources. There is a substantial amount of misinformation about DCIS and misinformation for newly diagnosed patients is common.
- Words to reinforce the points. Cardio deaths
- My personal experience. Misinfo ex: celebrities (Sandra Lee) often mix DCIS with invasive cancer Research includes: population science, cell biology, imaging + models, all the ‘modalities’, etc. Other healthcare providers May have outdated information, think of DCIS as cancer DCIS may be a person’s first experience with “cancer” It’s not simple!
- DCIS wasn’t diagnosed often before mammography. This chart shows more DCIS found as screening increased.
- treatment of a condition that might not cause harm during a patients' natural lifetime? Also autopsy studies show DCIS and IBC there, but they died of something else.
- BI-RADS =
- Biopsies only collect a small part of the lesion or tumor
- Not all pathologists grade the same lesion in the same way.
- Cutoff from ADH to DCIS – size? No cutoffs between ADH and DCIS – it’s up to the pathologist. LCIS isn’t treated; it’s monitored before surgery. It’s due to the way medical culture developed.
- ~ 2/3 are lumpectomy (also called Breast Conserving Surgery)
- Personal preference can include yours, your doctors, or both. Preferences are often based on incorrect interpretation or misunderstanding (internet searches, social media, unfounded fears)
- Patient advocate teams from PRECISION & the COMET study have suggested language to de-escalate fear and anxiety in the hopes of promoting better decision making. We suggest discussing DCIS without using the term CANCER when possible. In fact, there is reason to believe that low risk DCIS will probably not lead to invasive cancer. We also suggest using plain language terms, such as “other health conditions” instead of co-morbidities, condition rather than disease, growths/lumps instead of tumors. Words that are commonly associated with cancer escalate fear and anxiety and interfere with informed decision making.
- We performed a systematic review with meta-analyses to summarize current knowledge on prognostic factors for invasive disease after a diagnosis of ductal carcinoma in situ (DCIS). Eligible studies assessed risk of invasive recurrence in women primarily diagnosed and treated for DCIS and included at least 10 ipsilateral-invasive breast cancer events and 1 year of follow-up. Quality in Prognosis Studies tool was used for risk of bias assessment. Meta-analyses were performed to estimate the average effect size of the prognostic factors. Of 1,781 articles reviewed, 40 articles met the inclusion criteria. Highest risk of bias was attributable to insufficient handling of confounders and poorly described study groups. Six prognostic factors were statistically significant in the meta-analyses: African-American race [pooled estimate (ES), 1.43; 95% confidence interval (CI), 1.15-1.79], premenopausal status (ES, 1.59; 95% CI, 1.20-2.11), detection by palpation (ES, 1.84; 95% CI, 1.47-2.29), involved margins (ES, 1.63; 95% CI, 1.14-2.32), high histologic grade (ES, 1.36; 95% CI, 1.04-1.77), and high p16 expression (ES, 1.51; 95% CI, 1.04-2.19). Six prognostic factors associated with invasive recurrence were identified, whereas many other factors need confirmation in well-designed studies on large patient numbers. Furthermore, we identified frequently occurring biases in studies on invasive recurrence after DCIS. Avoiding these common methodological pitfalls can improve future study designs.