When you are newly diagnosed with any serious illness, you will have to make decisions that could have life-or death consequences. You need to know all your treatment options, the likely survival outcomes, and all the side effects and other short-term and long-term risks for each option. You want to be very sure that you will be better off with treatment than without treatment, and you want to be sure that any treatments you choose are the best ones available. You should read whatever you can, and you should also ask questions of other patients and your doctors.
Most of the cancer organizations have websites with information that newly-diagnosed breast cancer patients should know. For example, if you go to the National Cancer Institute (NCI) website, you can click on Breast Cancer and read a huge amount of information about every aspect of breast cancer. If you click on Publications/Order Free Copy, you can download pamphlets about many different aspects of breast cancer as PDF files or as ebooks. You can also get information as well as emotional support by connecting with other patients, both in person in support groups such as those at the Cancer Support Community, and online at websites such as breastcancer.org. You should learn about surgery, reconstructive surgery if you are considering it, chemotherapy, radiation, and hormone therapy. While you are educating yourself, you should be writing down the questions you want to ask each of your cancer specialists. The questions will need to be somewhat different for the surgeon, the plastic surgeon, the medical oncologist, and the radiation oncologist, but they will always center around the main three:
- What are all the treatment options available? Which one do you recommend, and why? This is where your research comes in handy. If there are options your doctor did not mention, you can bring them up.
- What would you expect my outcome to be for each option? (If you have questions about outcomes that the doctor has not addressed, bring them up). What can I do to improve the chances of a good outcome, in terms of lifestyle or other changes? What would you do if you were in my situation?
- What are the all the side effects and other short-term and long-term risks for each option? (Doctors can be very reticent in this area, possibly because they don’t want to frighten patients, so it’s a good idea to bring a list of risks and make sure he has covered them all.) What can I do to minimize side effects?
Your surgeon will be the doctor you see first, and you will get the most information from her. Some of this information will be available after your biopsy and other tests; but other information won’t be known until after your surgery if you elect to have it. The following list of questions can also be downloaded and printed at My Breast Cancer Coach.
- What stage is my cancer?
- Is my cancer invasive?
- Am I a candidate for Oncotype DX®, or other diagnostic tests?
- Making Medical Decisions
- Has my cancer metastasized?
- What is my lymph node status?
- How large is my tumor?
- What grade is my tumor?
- What is my hormone receptor status?
- What is my HER2 status?
- How quickly is my cancer growing?
- How likely is my cancer to recur?
- Is there a way to determine the likelihood that I will benefit from chemotherapy?
- How can I get a copy of my pathology report and testing information?
If you have a smartphone, you can also download the My Cancer Coach App, available on iPhone® or Android®, which features a list of questions you will want to ask your doctor.
You should compile similar lists of questions for your plastic surgeon, your radiation oncologist, and your medical oncologist.
It can be important to get a second opinion or more. Take the time you need. Doctors do not necessarily agree about treatment options for each patient, and you want to be confident that the treatment your doctor is recommending is the best option for you.
In addition to information you need from your doctor, you may also need other information, such as financial planning to cover the cost of treatment, planning for absence from work, for child care while you are recovering, etc. Reach out for the help you need.