So, it’s time to talk to doctors, what do I ask them? I gotchu boo. These are the questions that helped me when talking to doctors and determining next steps. This is one thing that I really appreciated from both hospitals: I was given a folder—with a helluva lot of information—with some version of the following questions and a space to write your answers.
I would meet weekly and monthly with a breast surgeon, a medical oncologist, a radiation oncologist and a fertility preservation specialist.
Go ahead and dog-ear the next few pages, you can thank me later!
- What is my primary diagnosis? Please write it out for me. You will say this a lot, so having it written down will help.
- Is there lymph node involvement? How many test positive? How many will you remove in surgery? What’s my risk of getting lymphedema should my lymph nodes be removed?
- What is my cancer staging? Describe the difference between my clinical and pathological staging.
- Talk to me about the Breast Cancer Index Test. Can I receive this testing? This will give you more information about your Oncotype. Oncotype can range between 1-30 (low rate of recurrence) or 31-100 with a high rate of recurrence. My oncotype was 31.
- Should we get my hormone levels tested? Will that include Estradiol and FSH?
- Can we review the pathology report together?
Deciding on a Treatment Plan
- What are my treatment options? Chemo before surgery? Surgery before chemo? Benefits and risks of both?
- Will this treatment impact my daily activities? Ability to work? Diet? Sexual activity? Exercise? I remember writing in this space: hydrate and plenty of protein which helps your muscles recover quicker during chemo.
- What can I do now to prepare for treatment so that I can decrease the impact of side effects? I remember writing: Claritin to help ease side effects. Ask your doctor about taking Claritin to help lessen chemo-induced headaches.
- Get to know the Neulasta Patch. Did you know that if your white blood cell counts are out of normal range, then your chemo will be interrupted. I had no idea. More on this in Chapter XX. Ask about the Neulasta patch which can be given 24 hours after chemo to help stimulate growth of healthy white blood cells, so your chemo won’t be interrupted.
- What else can I do? Any lifestyle changes? Why is this important?
- What happens if a visit, test, treatment or hospital stay is denied by my insurance provider? THIS is so important. It’s important to understand your insurance benefits going into your cancer journey. I discuss this more in the Insurance Support Chapter.
- What’s the percentage of treating this cancer type with this chemo regimen?
- What is the goal of the treatment? Will it cure me, help me live longer or help me with my symptoms? I remember writing here: “curative intent” which are two words that didn’t really make sense until I was on the other side of things. But looking back, I’m glad I wrote this out. It helped me mentally prepare for what was ahead. I also wrote “decreases the chances of the cancer coming back.”
- Why are you prescribing this treatment plan and what are the chances it will work? My response:” see how the tumor and body responds to cancer, to shrink the tumor and there being a possibility of not having surgery. What about surgery before chemo? Benefits?”
- What are the short and long-term side effects of this treatment? My response: neuropathy (see pain management for chemo for what I took every day during chemo to prevent this); nausea, bowel changes, hair thinning, fatigue, kidney function.
- How will this affect fertility? (If applicable.)
- How will I know if the treatment is working?
- Are there other treatment options?
- Where can I document my values and goals for care?
- Clinical trials: Am I able to be a part of clinical trials? Benefits? Risks? (If applicable.)
Question to ask about the appointment
- What should I bring to my appointment? Surgical or pathology reports? Diagnostic test results? Contact information for other doctors I have seen?
- How long will the visit likely last?
- May I bring a family member or friend to meet with the doctor?
- May I record the conversation? This may sound silly, but honestly, you’re going to be so thankful that you did because when you’re in the moment, you’re trying so hard not to break down and just answer all the questions. This way, you can go back and listen to them when you’re in a better place to really understand what the doctor said.
- What support staff members will be available during my visit? Oncology nurses, nurse navigator, social workers, nutritionists or registered dietitians, or counselors?