The conversation between you and your doctor when she tells you that you have breast cancer is life-changing. Sometimes that conversation takes place in person; sometimes it’s over the phone.
For most (not all, but most) patients, decisions on next steps do not need to be made immediately. Breast cancer is often slow-growing with a 5-to-10 year median survival rate following only surgical intervention.
If you’re anything like I was, you’ll be searching for ways to reassert control over your life. One way to do this is to learn enough about your breast cancer (there are so many different types) to make informed decisions about your treatment.
Talk to friends and family. They’ll connect you to other breast cancer survivors (or you can join one of the many online forums or Facebook support groups or ditch digital and connect with a local support group).
This is an excellent book, if you learn by reading:
What you can do to prepare for that next conversation
Get a notebook that you will take to your appointments. I strongly recommend that a friend or family member accompany you; that person should be the scribe. (At Seattle Cancer Care Alliance, the care team records each session and gives you a CD before you leave.)
This is step one in keeping all of your records related to your diagnosis and treatment accessible. If your care team doesn’t give you a binder, make one.
Things to record in the notebook before your followup appointment (which will probably be with a surgeon, because step one is removal).
- Family medical history, with a focus on cancer. Note how each person is related to you; the age at diagnosis; the type of cancer; whether the person survived.
- Your medical history, including surgeries and major illnesses. Any symptoms; major life changes/stressors.
- All the medications you’re taking, including vitamins and supplements.
- Questions to ask your doctor.
Here are some questions to get you started.
This is a LONG list; prioritize your questions because you will not have unlimited time with your care team. Many of these questions will be addressed by the care team prior to your asking. And it’s unlikely to be your only visit (unless you pick a different care team).
If you live in an area that has some sort of cancer care alliance or university hospital, I recommend that for your first or second opinion. It’s good to talk to everyone who might be on your team – surgeon, oncologist, radiation oncologist – before you decide on surgery.
After you’ve been told you have breast cancer, you’ll want to know:
- What type of breast cancer do I have?
- What do we know about the genomic makeup of my cancer, its hormone status, HER2 status, grade, Ki-67 (my pathology report)? May I have a copy of the pathology report for my records?
- Where is my cancer? How big do you think it is? (Screening is approximate)
- What is the stage of my cancer? (Understand that staging is a process; the first estimate may not be the final word.)
- How aggressive is my cancer?
- How do these factors affect my treatment options and long-term prognosis?
- What medications and supplements should I stop taking? Should I stop taking hormone replacement therapy? What about birth control pills?
- Are there any brochures or other printed material that I can take with me? What websites or books do you recommend?
- Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?
- How quickly do I need to make a decision about cancer treatment?
Before deciding on a treatment plan
- How much experience do you have treating this type of cancer?
- What would be the goal of the treatment?
- What are the pros and cons of genetic testing, such as MammaPrint?
- What are my treatment choices? What are the benefits and risks of each of these treatments?
- What would you recommend to a friend or family member in my situation?
- How does having reached (or not reached) menopause affect my treatment options?
- What happens if I don’t want cancer treatment?
- Will you help me find a doctor to give me another opinion?
- If I’m concerned about the costs and insurance coverage for my diagnosis and treatment, who can help me?
After hearing the recommended treatment plan
- Why are you (which may be the plural form of the pronoun) recommending this treatment plan?
- How soon do I need to start treatment? How long will treatment last?
- What risks or side effects are there to the treatments you suggest?
- How will treatment affect my daily activities? Can I still work full time?
- Will this treatment cause menopause?
- What are the chances the cancer will come back (recur) after this treatment?
- How will we know if the treatment is working?
- Can you help me find a doctor who practices alternative medicine, like a naturopathic oncologist, to supplement my treatment?
- What is my risk for lymphedema?
- Should I consider taking part in a clinical trial?
When treatment includes surgery
- How many surgeries, like you are recommending, have you performed?
- What are the pros and cons of breast-conserving surgery versus mastectomy for my cancer?
- Would I benefit from neo-adjuvent treatment (chemotherapy before surgery)?
- Is breast reconstruction surgery an option? What would it mean in my case? Should I talk with a plastic surgeon about reconstruction options?
- How long will I be in the hospital?
During post-surgical treatment (radiation, chemo, endocrine)
- How will we know if the treatment is working?
- Should a family member or friend come with me to my treatment sessions?
- What I can do to help manage side effects? What symptoms or side effects should I tell you about right away?
- Can I exercise during treatment? If so, what kind of exercise should I do, and how often?
- What suggestions do you have about diet?
- How often will I need to have follow-up exams, blood tests, or imaging tests?
- How will we know if the cancer has come back?
- What are my options should the cancer come back?
Life after a cancer diagnosis is a journey. Hopefully these questions can provide guidance to begin.
Sources for questions
- American Cancer Society
- Cancer.net (American Society of Clinical Oncology)
- Mayo Clinic
- National Cancer Institute