What We Know and Don't Yet Know About DCIS

What We Know & Don't Yet Know about
DCIS
03/25/2021
© Patient Advocates In Research (PAIR)
1
Deborah Collyar
President,
Patient Advocates in Research
What We Know &
Don’t YET Know
about DCIS
SHARE
Educational Program
March 25, 2021
1
Welcome to the confusing world of DCIS!
A person
facing
DCIS
Doctors
who
diagnose
Doctors
who treat
Research:
all kinds
Regulators,
policy, etc.
Companies/
product
makers
At least 75 breast
“diseases” (conditions)
https://bit.ly/3cYiigu
Misinformation also
spreads through internet,
social media, etc.
2
What do people want to know about DCIS?
• Why so many opinions: isn’t all DCIS the same?
• Is DCIS cancer or not?
• Will it come back? If so, will I die?
• What should I expect?
Adapted from Liz Frank, Dana-Farber Cancer Institute
• What is risk about?
• Why am I being referred to
cancer doctors?
• Are my family members at risk?
• Why is this so hard?
3
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
4
• • • • •
•
•
• •
• •
o o
o
o
o
o
o o o
o o
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 increased with mammography
Courtesy of Shelley Hwang, MD, Duke University
5
ü More breast cancer
ü More DCIS
ü No change in overall deaths
This means
Screening results?
‘Over-treatment’ for many (3 in 10 estimated)*
* 2017 University of Oslo
6

DCIS
03/25/2021
2
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 differently
than other breast conditions?
Adapted from Alastair Thompson MD, Baylor St. Luke’s Medical Center
https://bit.ly/3f0UuLy
Cancer cells inside Cancer cells inside
“There is no single definite cutoff that
separates ADH from DCIS.”
https://en.wikipedia.org/wiki/Atypical_ductal_hyperplasia
7
Poll question #2
What type of DCIS have you had?
1. Low grade DCIS
2. Medium grade DCIS
3. High grade DCIS
4. DCIS + invasive breast cancer
5. I have not had DCIS
6. I’m not sure
8
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
“…more what you'd call guidelines
than actual rules.”
- Barbossa, Pirates of the Caribbean
Adapted from Alastair Thompson MD, Baylor St. Luke’s Medical Center
https://www.iheartpathology.net/post/breast-dcis
9
2nd+ opinions can be useful about DCIS
• Pathologists: doctors who diagnose conditions like DCIS
• Not all DCIS lesions are easy to diagnose
• More opinions may help
• Talk doctors before treatment decisions
Resource ideas at end of webinar
Normal: https://bit.ly/3cT40Or DCIS grades: Courtesy of Alastair Thompson MD, Baylor St. Luke’s Medical Center
Grade 2
Grade 1 Grade 3
Normal
10
ü Finding DCIS by palpation (by feel)
ü Unclear margins
ü Being pre-menopausal (periods)
ü African-American ancestry
ü High grade DCIS (Grade 3)
ü High level of p16 marker
ü Less access to medical system
What factors add to
a 10-year risk
of invasive breast cancer?
Treatment recommended for grade 3
Visser et al. Cancer Epidemiol Biomarkers Prev 2019
11
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
12

DCIS
03/25/2021
3
Now, onto “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, 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
Also considered for “low risk” DCIS:
• ER/PR+
• HER2-
• Postmenopausal (+ 50 years old)
13
What happens if you don’t “treat” DCIS?
SEER 1988-2011 (past data)
Courtesy of Shelley Hwang MD, Duke University
Sagara et al, JAMA Surgery 2015
10-year DSS:
• Surgery: 98.8%
• No surgery: 98.6%
14
Retrospective (past) SEER data- no initial surgery
1286 DCIS patients
No “locoregional” therapy (not treated)
• Average age 60 years
• Average follow up: 5.5 years
o Grade 1/2 (n=547), 10 year ipsilateral inv breast cancer 12.2%
o Grade 3 (n=244), 10 year ipsilateral inv breast cancer 17.6%
Courtesy of Alastair Thompson MD.
Ryser et al J Natl Cancer Inst 2019
15
Prospective (current) DCIS cohort:
• 89 women
• No surgery
• 10 year
follow up
Maxwell et al. Eur J Surg Oncol 2018
High grade
Low
grade
16
ü DCIS is not an emergency
ü There is no “right” answer
ü Treatment is more about
personal preference:
• Surgery
• Radiation
• Hormonal therapy
• Reconstruction
• Active Monitoring (someday!)
You have time to decide!
17
Does delay matter?
New study from past data:
• 140,615 women with DCIS, 16,668 invasive breast cancer
• From diagnosis to surgery <30, 31-60, 61-90, or 91-120 days
• Slight increase in risk of invasive breast cancer over time
Ward et al Ann Surg Oncol 2020
BUT…
• Most studies don’t review by grade
• Or by known risk factors, e.g.
• Age <50, margins, distance to clinic, Black/Asian, etc.
18

DCIS
03/25/2021
4
• Science + research
• PRECISION Project
• Randomized clinical trial
• COMET study (US)
• Other studies
• LORD study (NL & Europe)
• LORIS study (UK)
• Risks & decisions
• Lifestyle factors
• Decision aids
What about research on
low-risk DCIS?
Courtesy of Jelle Wesseling, MD
Graphic cannot be reproduced without permission of the PRECISION Grand Challenge consortium.
See https://www.dcisprecision.org/ and https://cancergrandchallenges.org/teams/precision for more information.
19
PRECISION: science to clinic (eventually)
PREvent
ductal
Carcinoma
In Situ
Invasive
Overtreatment
Now
20
PRECISION clues, so far
Samples + data from ~50,000 women w/DCIS
• 3 countries: NL, UK, US
o 1999-2015 with 5-10 years of follow-up
o Average age: 59 (20-98)
DCIS grade matters
• Grade 1 (8-16%) + 2 (27-40%) + 3 (40-62%) = all DCIS
• Breast-conserving surgery: 56-75%
• Radiation therapy: 40-54%
• Hormone therapy: none to 54%
21
PRECISION clues, so far
DCIS to future DCIS within 5-10 years
• About 2% (1.9-2.2%)
• Residual or recurrence?
• If in other breast, it’s considered new
DCIS to invasive breast cancer within 5-10 years
• An unlucky few: 2-3%
• New: at least 20% were NOT related to 1st DCIS
22
PRECISION clues: NOT for clinic yet
Other findings for low-risk DCIS
• No new risk factors, including lifestyle
• Pathologists grade DCIS differently
• Similar risk for low risk between
DCIS surgery v. no surgery
• Size of fat cells + COX2 in breast
may affect risk
• Different DCIS growth patterns
may affect risk
• Finding some animal models that
mimic human DCIS
Next:
• Add more samples + data
• Bring projects together
• Start to build a risk model
23
Planned international validation in prospective randomized
trials
24

DCIS
03/25/2021
5
“Comparing an Operation to Monitoring,
with or without Endocrine Therapy
for Low-Risk DCIS” (COMET)
COMET is
• Suitable for all women with low-risk DCIS
• The only randomized clinical trial to gather evidence to potentially change
medical practice internationally
o The purpose of randomization is to provide groups that can be compared fairly
Adapted from Qualitative Research Integrated within Trials (QuinteT)
For more information about COMET: cometstudy.org, https://bit.ly/3vEBqJ0, and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6429899/
Key points about COMET
25
“Comparing an Operation to Monitoring,
with or without Endocrine Therapy
for Low-Risk DCIS” (COMET)
COMET is trying to:
• Understand the risks and benefits of each approach
o By measuring the rate of invasive cancer-free survival in the same breast
• Find out if one or both should be recommended for patients with low-risk DCIS
• The only randomized clinical trial to gather evidence to potentially change
medical practice internationally
• Randomization provides groups that can be compared fairly
26
COMET Trial for low-risk DCIS
Additional studies
• Breast Imaging
• Includes patient samples
• blood & tissue
27
COMET Study treatment approaches
described in a balanced way
Surgery
• Aims to remove the DCIS in an
operation (followed by radiation
therapy if needed), to reduce the
risk of invasive breast cancer
Active Monitoring
• Aims to monitor the DCIS closely and
frequently, to avoid surgery unless
there is concern for invasive breast
cancer
Surgery
• Lumpectomy or mastectomy
• Radiation therapy if needed
Active Monitoring
• Regular check-ups & mammograms
• Biopsy / change of treatment if needed
Surgery
• Breast is changed post-surgery
• Treatment side-effects, but…
Active Monitoring
• Natural breast is unchanged
• Worry DCIS could change, but …
28
• Patients lose some or all of breast
• Surgery and/or radiation can cause
side-effects that may affect
daily life and can be long-term
• More surgery (re-excision) may be
required if margins are not clear
• Potential need for 2nd surgery
(re-excision)
• Removes DCIS
• Lowers risk that DCIS cells could
become invasive someday
• In about 1 in 10 patients (10%)
with low-risk DCIS, some cells
may be invasive. Surgery
removes this.
• May create closure for some
• Find out about possible ‘upstaging’
Advantages & disadvantages for surgery
29
• Possible anxiety that DCIS might
grow or lead to invasive breast cancer
• Clinical exam + mammogram
every 6 months; extra radiation?
• Commitment to diligent follow-up
• More extensive treatment might be
needed later
• Lack of support/understanding
from friends, family and “support
groups”
• Avoids side-effects of surgery
& radiation
• About 8-9 out of 10 patients (80-90%)
are able to stay on active monitoring
for at least 10 years
• If concerning breast changes are seen,
can have surgery and other treatment
as needed
Advantages & disadvantages for active monitoring
30

DCIS
03/25/2021
6
COMET Study Patient Leadership Team
Words Matter!
• Updated
descriptions
• Updated
mindsets
31
Decision support
Part of COMET
• Decision Support Tool*
• Developed with
University of Utah
Netherlands Cancer Institute
• In development through
PRECISION program
* https://dcisoptions.org/dst
32
DCIS will be less confusing 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
• Spread the word about COMET & other studies!
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 of great importance
• Ask about resources you can use
Takeaway messages
33
COMET Study Team,
including the
Patient Leadership Team
PRECISION Team,
including the Patient
Advocate Integration Panel
Qualitative research
Integrated within Trials
(QuinteT)
Thank you to
34
Discussion time
35
Resources (a few examples)
SHARE services & materials (e.g. Novela in English & Spanish)
• 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/about
• https://www.lbbc.org/news-opinion/understanding-dcis
• PRECISION research: https://www.dcisprecision.org/
• COMET study: https://cometstudy.org (coming soon)
• 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
36

DCIS
03/25/2021
7
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)
37
Risk of upgrade to invasive disease?
Generally, upgrade of DCIS to invasive disease ~15%-25%
imaging used (MRI?)
biopsy tools and
number of sites
Vacuum Assisted Biopsy of 307 DCIS women*:
Overall upstage to invasive disease 17% (53/307)
üFor patient meeting surveillance eligibility upstage 6%
(5/81)
*Grimm et al Ann Surg Oncol 2017
Groen E et al. Breast Cancer Res. Treat. 2019
38
Post DCIS Treatment
• Post treatment planning should include access to resources that promote
healthy lifestyles, i.e. smoking cessation, weight loss, exercise,
mindfulness, etc.
• Addressing potential psychological impact:
Some patients will need help with access to emotional support – ask the
question
Concern about the long-term effects of surgery (i.e., loss of sensation,
pain, body-image issues), radiation, and hormonal therapy side effects
Fear and anxiety over uncertainty, DCIS recurrence or the development of
an invasive breast cancer (treatment implications and future scans)
Confusion about being a “cancer survivor”
• Little psychological support currently exists for DCIS patients
39
Psychological Impact of DCIS
• Different for each patient
• Many patients will suffer uncertainty, fright, concern over side effects,
loss of control and anxiety
• Financial concerns over treatment related co-pays, deductibles,
missed work-time may add to emotional burden
• Confusion adds another element as patients worry about whether they
are “true cancer survivors, whether they made the right treatment
decision, too much treatment, too little treatment, etc…
40

What We Know and Don't Yet Know About DCIS

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