stc progression: a boob buddy’s guide to breast cancer (how documenting cancer information differs...

by Debbie Kerr

Technical Communicator

Survivor of Breast Cancer Experience

© Deb Kerr, 2014

© 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


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?)


But you can disturb the

writer anywhere else


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



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”


© Deb Kerr, 2014 #stc14 @kerr_debbie A Boob Buddy’s Guide to Breast Cancer 6

http://www.flickr.com/photos/wonderlane/11903341854/


Before

During

After


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 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



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


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



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.

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


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?



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


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


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




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



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



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 to Internet leads to great

information being missed


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



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


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)


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


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.



Twitter: @kerr_debbie

LinkedIn: ca.linkedin.com/in/kerrdebbie

Email: [email protected]


If you haven’t done so already, check out a more detailed version of this

presentation under my name, Debbie Kerr, through Lanyrd.com.

stc progression: a boob buddy’s guide to breast cancer (how documenting cancer information differs...

Health & Medicine