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© Patient Advocates In Research (PAIR)
Deborah Collyar
President,
Patient Advocates in Research
Part 2:
DCIS Latest Research:
De-escalating the Fear of
Recurrence
SHARE
Educational Program
February 6, 2024
Shelley Hwang, MD
Duke University
• Part 1: https://www.youtube.com/watch?v=GxQSPzMKaoc
© 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
© Patient Advocates In Research (PAIR)
COMET Study Patient Leadership Team
Words Matter!
• Need updated
descriptions
• Need updated
mindsets
© Patient Advocates In Research (PAIR)
• 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
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/
© Patient Advocates In Research (PAIR)
• 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
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/
© Patient Advocates In Research (PAIR)
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 …
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/
© Patient Advocates In Research (PAIR)
Changing language & mindsets for low-risk DCIS
• https://cometstudy.org
• https://dcisoptions.org
© Patient Advocates In Research (PAIR)
Changing language: PRECISION
• PRECISION Patient Advocate Involvement Panel, https://www.dcisprecision.org
© Patient Advocates In Research (PAIR)
Deciding what
to do
* https://dcisoptions.org/dst
© Patient Advocates In Research (PAIR)
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
© Patient Advocates In Research (PAIR)
Decision Support Tool*
- what you think
* https://dcisoptions.org/dst
© Patient Advocates In Research (PAIR)
Decision Support Tool* - treatment info
* https://dcisoptions.org/dst
© Patient Advocates In Research (PAIR)
Decision Support Tool* - risk info
* https://dcisoptions.org/dst
© Patient Advocates In Research (PAIR)
Decision Support Tool * - risk info
* https://dcisoptions.org/dst
© Patient Advocates In Research (PAIR)
Decision Support Tool* - what’s best for me?
* https://dcisoptions.org/dst
© Patient Advocates In Research (PAIR)
Decision Support Tool* - questions to ask
* https://dcisoptions.org/dst
© Patient Advocates In Research (PAIR)
© Patient Advocates In Research (PAIR)
Discussion time
© 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

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Part II: DCIS Research: De-escalating the Fear of Recurrence

  • 1. © Patient Advocates In Research (PAIR) Deborah Collyar President, Patient Advocates in Research Part 2: DCIS Latest Research: De-escalating the Fear of Recurrence SHARE Educational Program February 6, 2024 Shelley Hwang, MD Duke University • Part 1: https://www.youtube.com/watch?v=GxQSPzMKaoc
  • 2. © 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
  • 3. © Patient Advocates In Research (PAIR) COMET Study Patient Leadership Team Words Matter! • Need updated descriptions • Need updated mindsets
  • 4. © Patient Advocates In Research (PAIR) • 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 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/
  • 5. © Patient Advocates In Research (PAIR) • 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 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/
  • 6. © Patient Advocates In Research (PAIR) 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 … 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/
  • 7. © Patient Advocates In Research (PAIR) Changing language & mindsets for low-risk DCIS • https://cometstudy.org • https://dcisoptions.org
  • 8. © Patient Advocates In Research (PAIR) Changing language: PRECISION • PRECISION Patient Advocate Involvement Panel, https://www.dcisprecision.org
  • 9. © Patient Advocates In Research (PAIR) Deciding what to do * https://dcisoptions.org/dst
  • 10. © Patient Advocates In Research (PAIR) 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
  • 11. © Patient Advocates In Research (PAIR) Decision Support Tool* - what you think * https://dcisoptions.org/dst
  • 12. © Patient Advocates In Research (PAIR) Decision Support Tool* - treatment info * https://dcisoptions.org/dst
  • 13. © Patient Advocates In Research (PAIR) Decision Support Tool* - risk info * https://dcisoptions.org/dst
  • 14. © Patient Advocates In Research (PAIR) Decision Support Tool * - risk info * https://dcisoptions.org/dst
  • 15. © Patient Advocates In Research (PAIR) Decision Support Tool* - what’s best for me? * https://dcisoptions.org/dst
  • 16. © Patient Advocates In Research (PAIR) Decision Support Tool* - questions to ask * https://dcisoptions.org/dst
  • 17. © Patient Advocates In Research (PAIR) © Patient Advocates In Research (PAIR) Discussion time
  • 18. © 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

Editor's Notes

  1. 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.