DCIS: What You Need to Know
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A diagnosis of DCIS often brings mixed messages. Is this a real breast cancer? What is the meaning of Stage 0? If this is not life threatening, why are the treatments similar to those recommended for an invasive cancer? Deborah Collyar, founder of Patient Advocates in Research, helps us interpret the new findings that will aid you in navigating this diagnosis.
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DCIS: What You Need to Know
- 1. DCIS: what you need to know SHARE webinar with Deborah Collyar March 22 2017
- 2. Deborah Collyar Thanks for joining us today! PAIR: Patient Advocates In Research HLM: Health Literacy Media* Author Computers & training Cancer survivor x 2+ Early patient advocacy movement Research projects & organizations Why? Connect researchers & patients Better treatments & decisions *Thanks for slide format!
- 3. Why is DCIS so confusing? DCIS details What do I need to know? DCIS decisions How can we find better answers?Research & you What we’ll cover
- 4. Normal Cells line up in breast ducts ADH Atypical Ductal Hyperplasia DCIS & LCIS Ductal Carcinoma In Situ Lobular Carcinoma In Situ IBC Invasive Breast Cancer ex: Infiltrating Ductal Carcinoma, Stages 1-4 Types of breast conditions http://breast-cancer.ca/dcis-grypes/
- 5. Find breast cancer early Lower death rates at first, but… Same death rates over time Found more breast conditions Why DCIS? Mammography Theory (1970s – 2000s)
- 6. 1980 1983 1985 1987 1989 1991 0 5 10 15 20 25 Thousands DCIS MMG Machines 1 in 1300 screening MMG diagnose DCIS DCIS = unintended consequence of increased screening DCIS rise with mammogram machines Courtesy of Shelley Hwang, MD
- 7. DCIS and Invasive Cancer Incidence (1975-2008) Screening mammograms introduced WHI data published DCIS Invasive Cancer Courtesy of Shelley Hwang, MD
- 8. Found more breast cancer Found DCIS No change in overall deaths This means Screening results? More DCIS diagnoses (~50,000 in US/year) Over-treatment for many (3 in 10 estimated)* * 2017 University of Oslo
- 9. Low or grade 1 Medium or grade 2 High or grade 3 Slow growth Cells look normal or like ADH Faster growth Cells look abnormal Rapid growth Cells in different sizes & shapes DCIS makes grades http://breast-cancer.ca/dcis-grypes/
- 10. Slow growth Cells look normal or like ADH Faster growth Cells look abnormal Rapid growth Cells in different sizes & shapes DCIS grades http://breast-cancer.ca/dcis-grypes/ Low risk DCIS High risk DCIS Low or grade 1 Medium or grade 2 High or grade 3
- 11. Surgery Radiation therapy Hormonal therapy http://www.mayoclinic.org/diseases-conditions/dcis/basics/treatment/con-20031842 Current treatments for DCIS Lumpectomy Mastectomy Double mastectomy (preventive) Whole breast (external) Partial breast (internal) Tamoxifen Aromatase inhibitors NOTE: for ER+ only
- 12. Monitor Surgery Radiation therapy Hormonal therapyActive Surveillance https://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=616060 What about Active Surveillance for low risk DCIS? Currently, less than 4 in 100 women (4%)
- 13. Complexity of the health care system How to find those at highest risk? The U.S. culture of medicine Do no harm?
- 14. Why is DCIS so confusing? DCIS details What do I need to know? DCIS decisions How can we find better answers?Research & you Questions?
- 15. You have TIME Treatment for DCIS depends on personal preference
- 16. You have TIME Treatment for DCIS depends on personal preference Survival higher than general population* Review your options 8 out of 10 won’t get a future DCIS or IBC High risk DCIS: all treatment options Low risk DCIS: Active Surveillance too
- 17. Surgery does not always give good results… Courtesy of Shelley Hwang, MD • Includes double mastectomies to “prevent” future DCIS or IBC • Long-term complications (pain, numbness, edema, multiple surgeries, etc.) • Women often don’t hear about problems when making decisions
- 18. The Worried Well after 2 years… From Shelley Hwang MD. Liu Y et. al. BCRT 2011 • 506 women in a quality-of-life (QOL) study • Completed interviews at baseline + 2 years after surgery • Fear of cancer “recurrence” • About 3 in 10 (30%) DCIS patients had medium/high levels of fear 2 years after surgery
- 19. Who is at risk for DCIS/IBC? What does that mean? How much can you handle? Fear = uncertainty Uncertainty = risk
- 20. Breast cancer survival - even better for DCIS! Seer.cancerlgov
- 21. DCIS in perspective: women live longer than general population* DCIS Dilemmas, 2015 DCIS: Ductal Carcinoma In Situ IBC: Invasive Breast Cancer * Netherlands Cancer Institute, 2017
- 22. Some risk factors are known Good news! Now we need to apply them
- 23. Age & hormones Periods, reproduction, density, DES Biology & self Genetics, history, biomarkers Diet & activity Alcohol, obesity, exercise, behavior Race & ethnicity Biology? Access? Bias? Risks for DCIS https://www.cdc.gov/cancer/breast/basic_info/risk_factors.htm Similar to breast cancer
- 25. High grade DCIS Unclear margins Multiple lesions Large lesions Under 40 at diagnosis African-American Access to medical system Those with DCIS at highest future risk over 10 years have more: DCIS Dilemmas 2015
- 26. More 10 year risk factors after having DCIS Kerlikowske et al. JNCI 2010 Risk factor Future DCIS Future IBC Age 40-49 years Over 40 If original DCIS: • Lump could be felt (palpable) No Yes • Lesion was larger (>10mm) Yes No • High grade or dead center (necrosis) Yes No • Unclear or positive margins Yes No High levels of these biomarkers : • P16+ - Yes • P16+ and Ki67+ - Yes • P16+ and Ki67+ and Cox2+ - Yes Abnormal levels of these biomarkers: • ER- Yes No • ERRBB2+ or ERBB2+ Yes No • Ki67+ Yes No • ER- and ERBB2+ Yes No • ER- and Ki67+ Yes No • P16+ and Cox2- and Ki67+ Yes No Differences between future DCIS and future Invasive Breast Cancer (IBC)
- 27. Why is DCIS so confusing? DCIS details What do I need to know? DCIS decisions How can we find better answers? Research & you Questions?
- 28. What happens if you don’t “treat” DCIS? SEER 1988-2011 From Shelley Hwang MD. Sagara et al, JAMA Surgery 2015 10-year DSS: • Surgery: 98.8% • No surgery: 98.6%
- 29. Basic research Biological reasons for DCIS & risk Clinical trials Treatment options by DCIS type Other Tests: risk scores Health outcomes & quality of life Imaging (mammography, etc.) Population science (epidemiology) Research areas DCIS Dilemmas 2015
- 30. o Mammaprint, Oncotype DX, MSKCC Nomogram o Developed for invasive breast cancer (IBC), not DCIS o Not clear for DCIS: included combined DCIS+IBC in studies o Best use o Decide about radiation therapy with a breast cancer diagnosis o For DCIS? o Promising, but not widely used o Need research specifically for pure DCIS About predictive tests…
- 31. LORIS LORD COMET PRECISION UK EORTC US Biomarkers from all DCIS is global: clinical trials for low risk
- 32. Endpoints: • 2, 5, 7-year invasive cancer dx • 2, 5, 7-year OS, DSS • PRO endpoints (QOL, fear of cancer recurrence, body image) COMET (Comparison of Operative to Monitoring and Endocrine Therapy) trial for low risk DCIS Eligiblity criteria: • Age ≥ 40 • Grade I/II DCIS without invasive cancer • Diagnosed confirmed by core or surgical biopsy • ER(+) and/or PR(+), HER2(-) if tested • No mass on PE or imaging Registered and randomized (n=900) GROUP 1: Usual Treatment (n=450) Surgery, Radiation or both choice for endocrine therapy Mammogram every 12 months for 5 years GROUP 2: Close Monitoring (n=450) choice for endocrine therapy Mammogram every 6 months for 5 years Courtesy of Shelley Hwang, MD
- 33. Patients who are NOT candidates for COMET • High grade or extensive DCIS • Palpable disease, other breast signs or symptoms • Mass on imaging Courtesy of Shelley Hwang, MD
- 34. DCIS will be less confusing with new clinical trials & studies • Stay informed (dcisoptions.org, dcis411.com, etc.) • Give us feedback • Spread the word about COMET! If you have/get DCIS • You have TIME • It’s a trade-off between future risk v. treatment effects • COMET, LORIS and LORD will help us see if Active Surveillance is as good as Usual Treatment for women with LOW risk DCIS In summary
- 35. https://collyar.wordpress.com/ www.facebook.com/DeborahCollyarAutho r Twitter: @deborahcollyar Thank you! Get in touch with deborah@tumortime.com Deborah Collyar http://amzn.to/2mNz8CD
- 36. Discussion time
- 37. Trade-offs to treatment (from US data/year) 34,000 lumpectomy 23,000 radiation 10,000 mastectomy 4000 double mastectomy + 20,000 hormonal therapy ~$250M annually > = < USUAL CARE ~1% 10-year disease- specific mortality benefit ACTIVE SURVEILLANCE (AS) From Shelley Hwang MD. Ong and Mandl, Health Affairs 2014 USUAL CARE (UC)
Editor's Notes
- ADH: has not yet penetrated cell walls. DCIS/LCIS: still within cell walls, but growing random ways IBC:
- The excellent prognosis for DCIS calls into question whether there is any survival benefit with early intervention for some low risk subsets.
- Currently, extent of surgery is dictated by disease extent and patient choice, and is highly effective in preventing invasive cancer. 10 year comparisons of risk for future DCIS or IBC: mastectomy 1% v. lumpectomy with radiation: 5-7% Hormonal therapy: NSABP B-35 compared tamoxifen to aromatase inhibitor (anastrozole)
- First, the system itself presents some serious barriers to health literacy. The U.S. health care system is tough to understand: Patients need to know about the various types of health professionals and services, how to access care, where to go for appropriate care, and how to use the health insurance system. Those are a lot of puzzle pieces to fit together! Health advice in our system also changes over time, because as doctors and researchers continue to study medicine, new studies reveal new answers. The built environment also presents barriers to health literacy. Patients need: To know how to use transportation to get to a facility and then find their way around it Access to healthy foods to follow doctor recommendations Safe and affordable housing You might be wondering why we’ve categorized the U.S. culture of medicine as a system barrier as opposed to a patient barrier. Yes, every person carries different beliefs about medicine, health, and wellness, but we believe that the U.S. health care system has a culture of medicine that caters to particular people and cultures, making it hard for others to navigate and access quality care. For example: The U.S. culture of medicine is individualistic, meaning we place emphasis on the individual person. Just think about HIPAA laws – we have to give permission to have our information talked about with family members. This can be difficult for patients with a group or family orientation who want others involved in their care and decision-making. The U.S. culture of medicine also has a biomedical belief system that disease is the result of a breakdown of physical parts. This is different from a determinism belief, where outcomes are preordained and can’t be changed. For example, you might diagnose a patient with cancer and have them refuse treatment because God planned it that way.
- Prevalence of moderate and high levels of fear of cancer recurrence by cancer stage in women with ductal carcinoma in situ (DCIS) and early invasive breast cancer (stages I and IIA). Moderate levels of fear were defined as scores rounded to 3 or 4 and high levels were defined as scores rounded to 5 or 6 on the CARS [4, 5]. Overall chi-square P = 0.06 Women with first primary DCIS, or stages I–IIA breast cancer were prospectively enrolled in a quality-of-life study and completed interviews at 4–6 weeks, 6 months, and 2 years after definitive surgical treatment. In three stepwise multivariable linear regression models, including both time-independent and time-varying variables measured at each respective interview, we identified independent correlates of mean FCR scores (range 1–6) using four items from the Concern About Recurrence Scale (CARS) at 2-year follow-up. Of 506 disease-free patients at 2-year follow-up (mean [SD] age, 58 [10] years; 81% White; 34% DCIS), the average FCR score of 2.0 was low. However, 145 (29%) reported moderate-to-high levels of FCR (scores 3.0–6.0). All three models showed that younger age, stage IIA breast cancer (vs. DCIS), lower social support, and elevated anxiety were consistently associated with higher FCR at 2-year follow-up (each P < 0.05; final models R 2 = 0.25–0.32). DCIS patients reported lower FCR than stage IIA patients (each P ≤ 0.01) but had similar FCR as stage I patients. Although mean FCR was low, 29% of DCIS and EIBC survivors reported moderate-to-high levels of FCR at 2-year follow-up. Management of anxiety, provision of social support, and patient education may help reduce FCR among DCIS and EIBC survivors, especially among younger survivors.
- Key Points: Panel B shows the Kaplan-Meier estimates of the risk of invasive IBE over time for each of the three DCIS Score groups. Again, the highest estimated risk of invasive IBE is in the high DCIS Score group (red) with an estimated 10 year risk of 19.1%, and the lowest is in the low DCIS Score group (blue) with an estimated 10 year risk of 5.1%. The log rank p-value of 0.01 means that there was a significant trend in invasive IBE risk across the three DCIS Score groups. It is important to note that 75% of the patients were in the low DCIS Score group, with an estimated 10 year invasive IBE risk of 5.1% (CI: 2.8% to 9.5%).
- What lingering questions are there about what we covered today? [Pause for questions] Feel free to reach out to me after this webinar. You can find me on these websites, social media, and email me if you have any questions we didn’t get to. More information is also available at any ebook store (Amazon listed here). If you would like to help us, please email me and we’ll send you a survey to help us all improve DCIS information! Thank you for having me today!