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)


http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/index

http://www.cancer.org/Cancer/BreastCancer/OverviewGuide/index

http://www.cancer.org/cancer/breastcancer/index

http://www.cancer.org/cancer/breastcancer/index

© 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.


http://info.cancer.ca/glossary/default.aspx?Lang=E&cceid=9625


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


https://www.google.com/url?q=http://galleryhip.com/caution-sign.html&sa=U&ei=vwciU_LpFYGhqwH45YHICA&ved=0CG0Q9QEwIA&usg=AFQjCNGjj1MtBrjcH6Cif2ZcmXT2uctiIw

© 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

Health & Medicine