ER/PR+, HER2- IDC Diagnosis: List of questions to ask your care team

Hi,

I was diagnosed with ER/PR+, Her2- invasive ductal carcinoma and DCS a month ago. I already had my initial appointment with a breast surgeon, medical oncologist, and radiation oncologist. I wanted to share the questions I prepared and asked each of them. I did not need to ask some of the questions because they covered them when they explained my diagnosis and tentative treatment plan. Hope this helps those who are preparing for their first appointments.

I had ultrasound, mammogram, and three doctor appointments on the same day. I did not record the doctor appointments but I had my husband and a friend with me. My friend took notes and sent me a summary of her notes later. This was very helpful.

Breast Surgeon

1. How much tissue will you remove to achieve clear margins?
2. Are you going to order genetic testing?
3. Will you check margins during surgery or only after (final pathology)?
4. If margins are not clear, what happens next?
5. If something looks worse during surgery, can the plan change (e.g., to mastectomy)?
6. How soon can I have surgery?
7. Will I need breast reconstruction? Do I need plastic surgeon consultation? Can I have DIEP flap in six months?
8. What can be a surprise? What’s the worst possible outcome or progression?
9. Can pathology results after surgery significantly affect the treatment plan?
10. What are the most common complications I should be aware of?

Medical Oncologist

1. Will you be ordering an Oncotype DX (or MammaPrint) test? When? If my score is low, can we safely skip chemotherapy?
2. Which hormone-blocking medication is best for someone who is perimenopausal? Will it be Tamoxifen or an Aromatase Inhibitor (AI)?"
3. How much does hormone therapy reduce my recurrence risk?
4. Do I need ovarian suppression shots in addition to hormone pills, or is the pill alone sufficient?
5. Since hormone therapy can affect bone density, should I have a baseline DEXA (bone density) scan before starting treatment?
6. Will treatment compromise my immune system?

Radiation Oncologist:

1. How does radiation work?
2. When does it start? How often, how long?
3. Are there things I won’t be able to do during treatment?
4. How many weeks of radiation would I need, and am I a candidate for 'short-course' radiation?
5. What are the long-term effects on the skin and underlying breast tissue?
6. Do you prescribe a lotion for the skin?