Supplementary Material 2: WiSDOM-B (Note: This survey has been modified from the survey taken by participants from the test cohort. The two modifications that occurred were clarification of mammogram timing and change in wording to allow patients with recurrent of bilateral breast cancer to participate. This is the survey that is being used in our subsequent trials. Additionally, instructions do not fully mirror what is seen by participants online.)

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Instructions

This survey is intended to help us understand what cancer patients remember about:

- cancer diagnosis

- cancer treatment

- recommended cancer follow up

Please tell us what YOU know about the breast cancer you had. We understand that you may not be sure of some answers -- do your best to answer. If you are not sure, it is OK to select “I don’t know.”

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1)What is your study ID number?

2)What year were you FIRST diagnosed with breast cancer? Select only one.

  1. List of year choices

3)Did you have surgery to remove a breast cancer?

  1. I had surgery on the RIGHT for breast cancer
  2. I had surgery on the LEFT for breast cancer
  3. I had surgery on BOTH sides for breast cancer
  4. I have NOT had surgery for breast cancer
  5. I don't know.

4)What kind of surgeries have you had? Please select all that apply. (If you had breast cancer more than once, please select ALL that apply, counting BOTH sides. If you have had breast cancer come back on the same side, please select ALL that apply counting BOTH initial diagnosis and recurrence)

  1. Lumpectomy (or partial mastectomy)
  2. Mastectomy
  3. Sentinel lymph node biopsy/dissection
  4. Axillary lymph node dissection
  5. I don't know.

5)Was cancer ever found in your lymph nodes?

  1. Yes
  2. No
  3. I did not have my lymph nodes checked.
  4. I don't know.

6)What stage was the breast cancer? (If you had chemotherapy before surgery, please tell us what stage the cancer was AFTER you had surgery).

  1. Stage 0 or DCIS
  2. Stage I
  3. Stage II
  4. Stage III
  5. Stage IV
  6. I have had breast cancer on both sides. [Since you have had breast cancer on both sides, please tell us the stage for the RIGHT (options a-e) and LEFT side (options a-e)].
  7. I have had a breast cancer recurrence. [Since you have had breast cancer recurrence, please tell us the stage when you were FIRST diagnosed, before the recurrence (offer options a-e)].
  8. I don't know.

7)Was the cancer estrogen-receptor positive (ER+)?

8)Was the cancer progesterone-receptor positive (PR+)?

9)Was the cancer HER2 positive (HER2+)?

  1. Yes
  2. No
  3. I don't know.

If bilateral breast cancer, answer for each side. If recurrent breast cancer, answer for both initial diagnosis and recurrence.

10)Have you ever gotten chemotherapy for breast cancer?

  1. Yes
  2. No
  3. I don't know.

11)What chemotherapy regimen(s) did you get? Please pick ALL that you think are right.

  1. CMF
  2. AC (includes ddAC)
  3. TC (includes ddTC)
  4. AC-T (includes ddAC-ddT or ddAC-weeklyT)
  5. TAC
  6. AC-TH
  7. TCH
  8. EC
  9. EC-T
  10. A regimen not listed above. (patient may provide free text response)
  11. I don't know.
  12. I did not get chemotherapy.

12)Can you tell us the names of the chemotherapy drugs? Please pick ALL the answers that you think are right. Skip if No to chemotherapy but show if I don’t know selected.

  1. 5-FU (Fluorouracil)
  2. Capecitabine (Xeloda)
  3. Carboplatin
  4. Cyclophosphamide (Cytoxan)
  5. Docetaxel (Taxotere)
  6. Doxorubicin (Adriamycin)
  7. Epirubicin (Ellence)
  8. Gemcitabine (Gemzar)
  9. Methotrexate
  10. Mitoxantrone (Novantrone)
  11. Nab-paclitaxel (Abraxane)
  12. Paclitaxel (Taxol)
  13. Trastuzumab (Herceptin)
  14. Other: (FREE TEXT)
  15. I don't know.
  16. I did not get chemotherapy.

13)Have you ever gotten radiation for breast cancer?

  1. Yes
  2. No
  3. I don't know.

14)Have you ever gotten or started endocrine therapy for breast cancer treatment? (Endocrine therapy is also known as hormonal or hormone therapy.)

  1. Yes
  2. No
  3. I don't know.

15)Have you ever gotten any of the following for breast cancer treatment? Please select ALL that apply.

  1. Tamoxifen
  2. Raloxifene (Evista)
  3. Anastrozole (Arimidex)
  4. Letrozole (Femara)
  5. Exemestane (Aromasin)
  6. Goserilin (Zoladex)
  7. Lupron
  8. Other (FREE TEXT)
  9. I don't know.

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Instructions

This part of the survey is intended to help us understand what patients remember about the possible side effects of treatment for breast cancer. Sometimes these treatments cause problems which:

- last for a long time (called CHRONIC side effect)

OR

- only start months or years after treatment (called future or LATE side effects).

When answering these questions, please pick ONLY the CHRONIC or LATE side effects that are possible for YOU. You should base your answers on whatever treatment you got. If you think that none of the choices are right, it is okay not to select anything.

16)Think about the SURGERY you had. What are the possible CHRONIC or LATE side effects? Please select ALL that apply to you.

17)Think about the CHEMOTHERAPY you had. What are the possible CHRONIC or LATE side effects? Please select ALL that applyto you.

18)Think about the RADIATION you had. What are the possible CHRONIC or LATE side effects? Please select ALL that applyto you.

19)Please think about the tamoxifen or raloxifene that you got. What are the possible CHRONIC or LATE side effects of that medication? Please select ALL that apply to you.

20)Please think about the anastrozole, exemestane or letrozole that you got. What are the possible CHRONIC or LATE side effects of that medication(s)? Please select ALL that apply to you.

  1. I did not get this treatment.
  2. Blood clots
  3. Breast or chest area pain/discomfort
  4. Fragile ribs
  5. Heart problems
  6. Hot flashes
  7. Infertility or menopause
  8. Low bone density
  9. Lung damage
  10. Lymphedema (swelling of the arm/chest)
  11. Uterine cancer (endometrial cancer)
  12. Leukemia
  13. Angiosarcoma (cancer of the blood vessels)
  14. Skin changes or scars
  15. Tingling or numbness of hands/feet (neuropathy)
  16. Vaginal dryness
  17. Joint pain/arthritis
  18. I don’t know.

21)Will you need to get a mammogram (or mammograms) in the next 12 months?

  1. Yes
  2. No
  3. I don’t know

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