A Boob Buddy’s Guide to Documenting Breast Cancer

A Case Study by Deb Kerr
Technical Communicator
Survivor of Breast Cancer Experience

© Deb Kerr, 2014
 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
Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 2

© Deb Kerr, 2014
 Technical communicator for over 25 years as 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
 Budding author in Grade 6 and poetry
contest winner in Grade 12
 Inability to read without critiquing or editing
 Great sense of humour (See a trend?)

© Deb Kerr, 2014
 To re-evaluate technical communication
 To appreciate the importance of audience and the
impact on documentation (format, content, delivery)
 To understand the impact of missing, incorrect, and
conflicting information
 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

© Deb Kerr, 2014
 I cannot easily say prosthetic breast (mouthful) or
prosthesis (lisp) so I say fake boob or boob for short.
 There will be some fake boob stories, but I will not
give any prior warning (other than this).
 My joking manner is in no way meant to lessen the
seriousness of breast cancer.
 Laughter is encouraged
throughout this presentation as
long as you are laughing with me.
This is just a test.
Fake boob picture
was intentionally
left out.

© Deb Kerr, 2014
 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 procedures
• Provided real-life examples
• Made people laugh
 Therapeutic for everyone
 Did not start until after my surgery, once I got my
cancer “legs”

© Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 7
http://www.flickr.com/photos/wonderlane/11903341854/

Before
During
After

Boob
Keys

© Deb Kerr, 2014
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
 More likely to re-read
information and read it carefully

© Deb Kerr, 2014
 A description of terms
 Assembly or installation
instructions
 Procedures to complete a task
and reinforcement that it is
being done correctly
 Explanation of how everything
fits together (concepts)
 Major focus: procedures
 A description of terms
 Descriptions of upcoming tests
and treatments
 General concepts
 What each audience can do to
improve the situation (physical
and emotional)
 Major focus: concepts and
terminology

© Deb Kerr, 2014
 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

© Deb Kerr, 2014
Usability: Too much information, incorrect
information, contradictory information, and missing
information can produce some interesting results.
Concepts: Existing knowledge is an important tool for
explaining things like concepts.
Terminology: The best description can’t add clarity if
the reader doesn’t understand the words.
Procedures: Traditional communications have more
clearly-defined steps than cancer communications.

© Deb Kerr, 2014
 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, information
delivered at the wrong time, unfortunate discoveries

© Deb Kerr, 2014
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.

 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 leads to great information
being missed

© Deb Kerr, 2014
 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

© Deb Kerr, 2014
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)

© Deb Kerr, 2014
The Canadian Cancer Society understands that Canadians are concerned about
cancer, but recommends that you be cautious of any information or claims obtained
from unmonitored sources, in particular the Internet. The Internet can be an
empowering source of information, but a healthcare professional should be
consulted before making medical decisions.
http://www.cancer.ca/en/prevention-and-screening/be-aware/cancer-myths-and-controversies/
(Canadian Cancer Society)
Cancer Myth: If it’s on the Internet, it must be true.

© Deb Kerr, 2014
Information can be contradictory because:
 The volume of information makes it more likely to differ.
 Procedures vary between hospitals and doctors.
 Breast cancer is unique for each person.
 There are a large variety of opinions and perspectives.
 Incoming information is different than current beliefs.
Contradictions can leave readers more confused than
when they started reading it.

© Deb Kerr, 2014
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

http://www.cancer.ca/en/cancer-information/cancer-type/breast/overview
(Canadian Cancer Society)

© Deb Kerr, 2014
 The part of the body between
the chest and the pelvis that
contains the digestive system
and other organs.
 Abdominal means referring to or
having to do with the abdomen,
as in abdominal wall.
 Commonly called the belly.

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)

Graphics by Kyle Kerr

Graphic by Kyle Kerr

© Deb Kerr, 2014
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

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.
Boob Buddy email of November 7, 2011

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

© Deb Kerr, 2014
 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?

© Deb Kerr, 2014
No Tamoxifen
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

© Deb Kerr, 2014
 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.

Bad Estrogen
Bad Estrogen
Tamoxifen
Estrogen Receptors Estrogen Receptors on Drugs

© Deb Kerr, 2014
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

© Deb Kerr, 2014
adjective 1. additional; supplementary; reserve: an
auxiliary police force.
2. used as a substitute or reserve in case of need: The
hospital has an auxiliary power system in case of a
blackout.
3. (of a boat) having an engine that can be used to
supplement the sails: an auxiliary yawl.
4. giving support; serving as an aid; helpful: The mind
and emotions are auxiliary to each other.
http://dictionary.reference.com/

© Deb Kerr, 2014
Grade (appearance and behavior of the tumor) and
Stage (extent of the disease) are two different things.
The cancer I had was Grade 2. Grade 1 is the slowest
growing cancer and Grade 3 is the fastest one. So I
am middle of the road. This is one of those times
where you don't really want to excel, so I am okay
with my grade.
Boob Buddy email of May 5, 2011
When it’s okay to have a
lower grade.

© Deb Kerr, 2014
1. See a doctor.
2. Get referrals for tests.
3. Wait for the test dates and wait for the results.
4. Get referrals to other doctors.
5. Wait to see those doctors.
6. Get referrals from other doctors for more tests.
7. Repeat step 3, that is, wait.

© Deb Kerr, 2014
8. Meet with one or more doctors to decide on a
treatment plan.
9. Wait for the date to start treatment.
10. Start the treatment.
11. Depending on the treatment, meet with a doctor and
possibly have tests in between treatments.
12. Wait to see a doctor to get results.
13. Complete next treatment if you get the thumbs up.
14. Repeat steps 10 to 13 as needed.

© Deb Kerr, 2014
 Doctor and hospital – remember the shower and drain story
 Grade – 1 to 3 (slowest to fastest growing)
 Stage – tumor size, lymph node involvement, invasive or non-
invasive, and whether it has spread to other parts of the body
 Hormone Receptors (-/+) – medication an option
 HER2 (-/+) – aggressiveness of the cancer
 LVI– possible indicator of whether cancer will return
 Size of breasts and chest wall – duration of radiation treatments
 Height and weight – dosage given for tests and treatment
 Existing health issues and medications – what needs to be
monitored, drug interactions, and what is considered an emergency

© Deb Kerr, 2014
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
Happy path

© Deb Kerr, 2014
 Wrote “letter” of concern on December 13, 2010
 No ordinary letter: Background, Areas of Concern,
Recommendations, and Conclusion
 Expressed concerns about:
• Processes
• Collection of information
• Format of forms
• Communication issues
Result: 20-minute phone conversation on December 24th
with director of problematic area

Facility B Tests
• Mammogram
• Ultrasound
• Ultrasound Biopsy
• Fine Needle Aspiration
• MRI
• MRI Biopsy
• Sentinel Node Dye
Facility B Treatment
• Mastectomy
• Sentinel and Axillary
Lymph Nodes Removal
Facility C Treatment
• Port-a-Cath
• Chemotherapy
Facility C Oncologists
• Medical
• Radiation

© Deb Kerr, 2014
 Contrast in service between Facility A and other
facilities now very clear:
• Communication
• Technical skills to perform medical procedures
• Attention to detail
 More aware of potential ramifications of diagnostic
issues prior to being sent to Facility B
 Wrote second “letter” on September 12, 2011
Result: Internal investigation and receipt of letter
from problematic medical specialist.

Investigation into the Standard of Care,
Communication, and Technical Skills at
Facility A
By Debbie Kerr
August 23, 2012

© Deb Kerr, 2014
 Executive Summary
 Some Background
 General Comments about the Investigation
 Summary of Concerns and Responses (from letter 2)
• Standard of Care
• Communication
• Technical Skills
 Recommendations
 Conclusion

Date Test/Action Results Recommendation Comments/Next Steps
Nov. 9/10 Mammogram
(Medical
Imaging)
• Asymmetric ill-defined area of
increased density measuring 4
to 5 cm in diameter 12:00 mid-
left breast
• Spreads out minimally
• No associated
microcalcifications or
architectural distortion
Dr. Smith
• Focused ultrasound
• MRI may also be
helpful
• Focused Ultrasound booked for
November 16, 2010 (Medical Imaging)
Nov. 16/10 Focused
Ultrasound
(Medical
Imaging)
• Moderate dilation of the retro-
areolar ducts in both breasts
• 2 echogenci intraductal
“nodules” at 12:00, measuring
3.3 and 3.5 mm (compatible
with tiny polyps or echogenic
debris)
• Dense fibroglandular tissue
• No suspicious masses
• Believe to be query intraductal
papillomas as described
Dr. Smith
• Surgical consultation
• Ductogram
• MRI
• Ductogram requested on November 18
and scheduled for Nov. 22, 2010
(Facility A)
• Surgical consult scheduled with Dr.
Jones (December 9, 2010)
• Request for MRI submitted with
mammogram results but was not
approved.

© Deb Kerr, 2014
 In an investigation, involve all the main medical
personnel associated with that care.
 Recognize tests done at other facilities as part of the
standard of care.
 Encourage and facilitate discussions between
medical personnel at different facilities.
 Develop a procedure to address multiple requisitions
for a test and multiple rejections.

© Deb Kerr, 2014
 Two-hour meeting with four
representatives from Facility A
• Family doctor attended for first hour
• Discussed my report (lots of questions
and answers on both sides)
• Many of my recommendations will be
implemented
• New areas for change were identified
during meeting
• Asked if my scenario could be used as a
case study

© Deb Kerr, 2014
 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 Documenting Breast Cancer

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A Boob Buddy’s Guide to Documenting Breast Cancer