Documenting information for breast cancer patients is different than documentation prepared for traditional topics (e.g., software applications). What information to provide, how to provide it, and when to deliver it are critical to maximize the usefulness to the patient.

1. by Debbie Kerr
Technical Communicator
Survivor of Breast Cancer Experience© Deb Kerr, 2014

2. © Deb Kerr, 2014 #stc14@kerr_debbie
 Cancer journey from November 2010 to November 2011
 Two types of breast cancer:
• Non-invasive Ductal Carcinoma In Situ (DCIS) – Stage 0
• Invasive Stage IIB
• Area of cancerous material
12 cm x 6 cm x 4 cm = 4.72 in x 2.4 in x 1.6 in
 Mastectomy, chemotherapy, radiation, and ongoing
medication…the party pack of treatments
 Worked during my chemotherapy and radiation treatments
 Believer that wigs and fake boobs = humour
A Boob Buddy’s Guide to Breast Cancer 2

3. © Deb Kerr, 2014 #stc14@kerr_debbie
 Technical communicator for over 25 years: technical
writer, newsletter editor, and business analyst
 Council member with the STC Southwestern Ontario
Chapter (Canada) – have held nearly every position
 Winner of Best of Show in STC’s
newsletter competition
 Inability to read without critiquing
or editing
 Great sense of humour (See a trend?)
A Boob Buddy’s Guide to Breast Cancer 3
But you can disturb the
writer anywhere else

4. © Deb Kerr, 2014 #stc14@kerr_debbie
 To re-evaluate what we consider to be technical
communication
 To recognize that the subject matter being
documented can vastly impact the importance of
audience, format, content, and delivery
 To see how seemingly unrelated things can create a
mental image that is unforgettable
 To recognize new opportunities to use technical
communication, even outside of work
A Boob Buddy’s Guide to Breast Cancer 4

5. © Deb Kerr, 2014 #stc14@kerr_debbie
 Name of my email group (about 40 members)
 Communication to family, friends, co-workers, and
family doctor
• Provided information and status updates
• Explained concepts and terminology
• Provided real-life examples
• Made people laugh
 Therapeutic for everyone
 Did not start until after my surgery, once I got my
cancer “legs”
A Boob Buddy’s Guide to Breast Cancer 5

6. © Deb Kerr, 2014 #stc14@kerr_debbie A Boob Buddy’s Guide to Breast Cancer 6
http://www.flickr.com/photos/wonderlane/11903341854/

7. © Deb Kerr, 2014 #stc14@kerr_debbie A Boob Buddy’s Guide to Breast Cancer 7
Before
During
After

8. © Deb Kerr, 2014 #stc14@kerr_debbie
Traditional Information Cancer Information
 Generally one audience and
one perspective
 Personality types and ages are
not usually considered
 Expect a happy path to get from
point A to B
 Readers skim pages to complete
time-sensitive tasks
 Many audiences (patient, family,
co-workers, friends)
 Many personality types and
ages to consider
 Chaotic experience with no one
way to do anything, which
results in emotional component
 More likely to re-read
information and read it carefully
A Boob Buddy’s Guide to Breast Cancer 8

9. © Deb Kerr, 2014 #stc14@kerr_debbie
Traditional Information Cancer Information
 A description of terms
 Assembly or installation
instructions
 Explanation of how everything
fits together
 Procedures to complete a task
and reinforcement that it is
being done correctly
 Major focus: procedures
 A description of terms
 Descriptions of upcoming tests
and treatments
 Many medical concepts
 What patients can do to improve
their situation (physical and
emotional aspects)
 Major focus: concepts and
terminology
A Boob Buddy’s Guide to Breast Cancer 9

10. © Deb Kerr, 2014 #stc14@kerr_debbie
Process 1 Process 2 Process 3 Process 4 Process 5
1. Symptom
2. Doctor
3. Mammogram
4. Ultrasound
biopsy
5. Mastectomy
6. Oncologists
7. Chemo
8. Medication
ER+ (pre-
menopause)
1. Regular
mammogram
2. Doctor
3. Results neg.
4. Relax. OK.
1. Regular
checkup
2. Mammogram
3. Ultrasound
4. Ultrasound
biopsy
5. Lumpectomy
6. Oncologists
7. Chemo
8. Radiation
9. Herceptin® for
being HER2+
1. Symptom
2. Doctor
3. Mammogram
4. Ultrasound
5. Ultrasound
biopsy
6. Lumpectomy
7. Oncologists
8. Radiation
9. Medication
ER+ (post-
menopause)
1. Symptom
2. Doctor
3. Mammogram
4. Ultrasound
5. Ductogram
6. Ultrasound
biopsy
7. MRI
8. MRI biopsy
9. Mastectomy
10. Oncologists
11. Chemo
12. Radiation
13. Medication
A Boob Buddy’s Guide to Breast Cancer 10
Happy path

11. © Deb Kerr, 2014 #stc14@kerr_debbie
Me My Friend
 Drains out after fluid output
under 30 ccs (12 / 15 days)
 Can shower with drains in
 Chemo (AC - T):
• 2 drugs over 4 treatments
• 1 drug over 4 treatments
 Steps for breast reconstruction
only after radiation treatments
completed
 Drains out after 5 days
regardless of fluid output
 No shower until drains removed
 Chemo (ACT):
• 3 drugs over 4 treatments
 Steps for breast reconstruction
started as part of mastectomy
A Boob Buddy’s Guide to Breast Cancer 11

12. © Deb Kerr, 2014 #stc14@kerr_debbie
On the bright side, the peeling stops just under my
one tattoo, so I know that if the purpose of the
tattoo was to identify the range of the radiation
then they hit it. Very impressive this accuracy. The
line between the regular skin and the new skin is
starting to get less noticeable too. I told people that
I looked sort of like a text box (I am a writer so that
is how my mind works). There is a line around the
outside of the box but there is nothing in it.
Boob Buddy email of December 8, 2011
A Boob Buddy’s Guide to Breast Cancer 12

13. © Deb Kerr, 2014 #stc14@kerr_debbie A Boob Buddy’s Guide to Breast Cancer 13
It turns out that over the course of 25 treatments (5 days a week
for 5 weeks), I received a total of 5000 centigray (cGy) of
absorbed radiation. This means I had about 200 cGy per day. One
rad (older terminology for unit of measurement) of radiation is
equal to 1 centigray.
To put things into perspective, one abdominal x-ray is equal to
about 0.14 cGY (found this on the internet). This means that I had
the equivalent of about 35,714 x-rays over 25 treatments.
Boob Buddy email of November 7, 2011
5,000 / 25 = 200 x 0.14 = 35,714 x-rays

14. © Deb Kerr, 2014 #stc14@kerr_debbie
 Pathology reports, in addition to stage and grade,
identify whether you are estrogen and/or
progesterone positive (ER+/PR+)
 Being estrogen or progesterone positive means your
cancer is hormone driven
 Being positive is considered good because
medication can be used to block the hormones
 The question is…how does the medication work?
A Boob Buddy’s Guide to Breast Cancer 14

15. © Deb Kerr, 2014 #stc14@kerr_debbie
No Tamoxifen
A Boob Buddy’s Guide to Breast Cancer 15
Estrogen
binds with
estrogen
receptor
The bound
items acquire
new shape
The new
shape binds
with
cooactivators
With Tamoxifen
Tamoxifen
binds with
estrogen
receptor
Estrogen receptor
does not acquire
change in shape
There is no
new shape so
cooactivators
cannot bind

16. © Deb Kerr, 2014 #stc14@kerr_debbie
 Estrogen receptors are like suction cups on the
bottom of your bath mat.
 When the mat is new, it sticks extremely well to the
bottom of your tub.
 Over time, the suction cups lose their effectiveness.
The cups get flattened and get disgustingly dirty.
 Tamoxifen acts like dirt to fill the suction cups so
bad estrogen cannot adhere to the receptors.
A Boob Buddy’s Guide to Breast Cancer 16

17. © Deb Kerr, 2014 #stc14@kerr_debbie A Boob Buddy’s Guide to Breast Cancer 17
Bad Estrogen
Bad Estrogen
Tamoxifen
Estrogen Receptors Estrogen Receptors on Drugs

18. © Deb Kerr, 2014 #stc14@kerr_debbie
The sentinel nodes are the first line of defense. For me,
my sentinel nodes (2 of them) were cancerous, which is
why they removed my axillary nodes (20 of them) for
testing.
The (auxiliary) axillary nodes are the second and last
line of defense for keeping cancer from spreading to
other parts of the body. Had any of these axillary nodes
been cancerous, it could have meant that the cancer in
my breast had breached the area and gone to other
areas of my body.
Boob Buddy email of April 20, 2011
A Boob Buddy’s Guide to Breast Cancer 18

19. © Deb Kerr, 2014 #stc14@kerr_debbie
Traditional Information Cancer Information
 Quick Reference Guide
 Websites (wikis, forums,
articles, discussion boards)
 Manuals (installation, getting
started, user’s guide)
 Newsletters and books
 Online Help
 “How to” videos
 Training (in-person, webinars)
 Single sheets of paper
 Websites (blogs, forums,
articles, discussion boards)
 Brochures and pamphlets
 Booklets, books and
newsletters
 Videos (websites or DVDs)
 Seminars, workshops, and
support groups
A Boob Buddy’s Guide to Breast Cancer 19

20. © Deb Kerr, 2014 #stc14@kerr_debbie
 Checking out one page on the Internet is like only
eating one chip…not possible
 Every page is chip one until the
package is finished
 Lack of structure and volume of data
on the Internet are problematic
 Results in conflicting information, incorrect
information, information delivered at the wrong
time, and unfortunate discoveries
A Boob Buddy’s Guide to Breast Cancer 20

21. © Deb Kerr, 2014 #stc14@kerr_debbie
1. Manual sets: Getting Started, Reference Manual,
User’s Guide, Installation Guide (Printed)
2. Same as above but online
3. Single-sourcing: Same information used in
multiple documents
4. Mark Baker’s Every Page is Page One, where each
web page can stand on its own.
Chunking is becoming less popular.
A Boob Buddy’s Guide to Breast Cancer 21

22. © Deb Kerr, 2014 #stc14@kerr_debbie A Boob Buddy’s Guide to Breast Cancer 22
 Control speed information is accessed
 Audience’s personality determines the chunk’s size
• One test at a time
• One type of cancer treatment at a time
 Booklets, pamphlets, single sheets of paper, DVDs
 Just-in-time delivery is key to success
 Emotional response to Internet leads to great
information being missed

23. © Deb Kerr, 2014 #stc14@kerr_debbie
 List of some of the booklets available on the
Canadian Cancer Society website.
 Understanding your Diagnosis
 Understanding Treatment for Breast Cancer
 Exercises after Breast Surgery
 Chemotherapy and Other Drug Therapies
 Radiation Therapy
 Life After Cancer Treatments
 Questions to Ask about Cancer
 Complementary Therapies
A Boob Buddy’s Guide to Breast Cancer 23

24. © Deb Kerr, 2014 #stc14@kerr_debbie
Learn About Breast Cancer
Whether you’re worried about developing breast
cancer, making decisions about treatment, or trying
to stay well after treatment, we can help. Find
detailed information in our Detailed Guide, or get a
shorter, simpler version in our Overview Guide.
http://www.cancer.org/cancer/breastcancer/index
(American Cancer Society)
A Boob Buddy’s Guide to Breast Cancer 24

25. © Deb Kerr, 2014 #stc14@kerr_debbie A Boob Buddy’s Guide to Breast Cancer 25
The biggest piece of
missing information
http://www.cancer.org/cancer/breastcancer/moreinformation/breastcancerearlydetection/
breast-cancer-early-detection-signs-symptoms-br-ca
(American Cancer Society)

26. © Deb Kerr, 2014 #stc14@kerr_debbie A Boob Buddy’s Guide to Breast Cancer 26
Communication Content Results
Letter 1
Dec. 13, 2010
Expressed concerns about:
• Processes
• Collection of information
• Format of forms
• Communication issues
20-minute phone conversation on
December 24th with director of
problematic area
Letter 2
Sept. 12, 2011
• Communication
• Technical skills to perform
medical procedures
• Attention to detail
Internal investigation and receipt of
letter from problematic medical
specialist
Report
Aug. 23, 2012
• Comments about investigation
• Summary of concerns and
responses (from letter 2)
• Standard of Care
• Communication
• Technical Skills
• Recommendations
• Two-hour meeting with four
representatives from Facility A
• New areas for change were
identified
• Changes will be made to current
policies and procedures
• Possibility letters and reports
could be used as a case study

27. © Deb Kerr, 2014 #stc14@kerr_debbie
 Concepts and terms are more predominant in
cancer documentation than procedures.
 Unusual connections (words and pictures) can make
information easier to understand and remember.
 Unstructured nature of Internet and volume of data
can be problematic.
 Technical communication can take many forms
including letters and emails.
 Technical communication is a lifestyle.
A Boob Buddy’s Guide to Breast Cancer 27

28. © Deb Kerr, 2014 #stc14@kerr_debbie
Twitter: @kerr_debbie
LinkedIn: ca.linkedin.com/in/kerrdebbie
Email: debbieakerr@gmail.com
A Boob Buddy’s Guide to Breast Cancer 28
If you haven’t done so already, check out a more detailed version of this
presentation under my name, Debbie Kerr, through Lanyrd.com.