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.
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)
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?
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
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
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
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)
Notes de l'éditeur
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!