A Boob Buddy’s Guide to Documenting Breast Cancer

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Cancer cells are not the only thing that are atypical when it comes to breast cancer. Creating documentation for breast cancer patients has its own unique challenges. Concepts, terminology, procedures, and usability are just some of the considerations.

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A Boob Buddy’s Guide to Documenting Breast Cancer

  1. 1. A Case Study by Deb Kerr Technical Communicator Survivor of Breast Cancer Experience
  2. 2. © 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
  3. 3. © 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?) Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 3
  4. 4. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 4
  5. 5. © 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. Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 5 This is just a test. Fake boob picture was intentionally left out.
  6. 6. © 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” Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 6
  7. 7. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 7 http://www.flickr.com/photos/wonderlane/11903341854/
  8. 8. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 8 Before During After
  9. 9. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 9 Boob Keys
  10. 10. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 10
  11. 11. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 11
  12. 12. © Deb Kerr, 2014 Traditional Information Cancer Information  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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 12
  13. 13. © Deb Kerr, 2014 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 13
  14. 14. © 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. Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 14
  15. 15. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 15
  16. 16. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 16
  17. 17. © 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. Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 17
  18. 18. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 18  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
  19. 19. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 19
  20. 20. © 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) Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 20
  21. 21. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 21
  22. 22. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 22
  23. 23. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 23
  24. 24. © 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) Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 24 Cancer Myth: If it’s on the Internet, it must be true.
  25. 25. © 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. Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 25 Contradictions can leave readers more confused than when they started reading it.
  26. 26. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 26
  27. 27. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 27 http://www.cancer.ca/en/cancer-information/cancer-type/breast/overview (Canadian Cancer Society)
  28. 28. © 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. Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 28
  29. 29. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 29
  30. 30. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 30 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)
  31. 31. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 31
  32. 32. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 32 Graphics by Kyle Kerr
  33. 33. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 33 Graphic by Kyle Kerr
  34. 34. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 34
  35. 35. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 35
  36. 36. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 36 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
  37. 37. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 37 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
  38. 38. © 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? Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 38
  39. 39. © Deb Kerr, 2014 No Tamoxifen Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 39 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
  40. 40. © 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. Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 40
  41. 41. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 41 Bad Estrogen Bad Estrogen Tamoxifen Estrogen Receptors Estrogen Receptors on Drugs
  42. 42. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 42
  43. 43. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 43
  44. 44. © 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/ Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 44
  45. 45. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 45 When it’s okay to have a lower grade.
  46. 46. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 46
  47. 47. © 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. Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 47
  48. 48. © 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. Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 48
  49. 49. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 49
  50. 50. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 50 Happy path
  51. 51. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 51
  52. 52. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 52 Result: 20-minute phone conversation on December 24th with director of problematic area
  53. 53. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 53 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
  54. 54. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 54 Result: Internal investigation and receipt of letter from problematic medical specialist.
  55. 55. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 55 Investigation into the Standard of Care, Communication, and Technical Skills at Facility A By Debbie Kerr August 23, 2012
  56. 56. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 56
  57. 57. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 57 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.
  58. 58. © 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. Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 58
  59. 59. © 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 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 59
  60. 60. © 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. Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 60
  61. 61. © Deb Kerr, 2014 Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 61
  62. 62. © Deb Kerr, 2014 Twitter: @kerr_debbie LinkedIn: ca.linkedin.com/in/kerrdebbie Email: debbieakerr@gmail.com Spectrum 2014: A Boob Buddy’s Guide to Breast Cancer 62

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