You have just been diagnosed with breast cancer, or found you have a gene mutation putting you at high risk for getting breast cancer. Suddenly you are faced with speaking with multiple physicians about your treatment options. The physicians may include any combination of the following: medical oncologist, radiologist, breast surgeon/surgical oncologist, and plastic surgeon. 

What exactly is shared decision-making, and how do you engage in a shared decision-making conversation with your physician(s) for your breast cancer and breast surgery care? 

Shared decision-making is a collaborative effort between patients and their clinicians to decide the best treatment plan. It takes the patient’s preferences and values into consideration and combines these with the expertise of the clinician and evidence-based studies, to come to a decision that is best aligned with the patient’s situation, preferences, and values. Pros and cons, potential complications, recovery, lifestyle, support structure, work constraints are just a few of the important topics to discuss during a shared decision-making consult. Basically, anything that is important to you when making a decision should be on the table for discussion. It’s up to you to make those factors known. 

We cannot for a moment pretend this is an easy concept or conversation for anyone to engage in. What it is, is a commitment from both the patient and the clinician. It takes work and preparation from both. 

It will be easier for some than others. For that reason, I want to present some actionable items you can use to help you overcome some of the challenges.

Time, without a doubt, has to be one of the biggest challenges we face. Think of this as a business meeting. You get to plan your part and the surgeon will plan his/hers. 

Begin by calling the office of your physician and asking how much time will be allowed for your consult. When you go, take something with you to keep your mind active on the off chance, and we all know it can happen, your clinician is running a little late. You never know when they are in surgery or delayed with a patient requiring extra time. That could be you in the room needing the extra time so please keep this in mind. Try to give yourself an extra dose of patience.

If your initial consult is via telehealth, there is no reason you cannot put these same practices into action. For a virtual consult, be familiar with the technology and platform being used, Skype, Zoom, or whatever the clinician is using. Honor your time and set up your virtual consult in a quiet room with no distractions. If you can, have someone there with you to take notes so you can completely focus on the conversation.

In reality, there are two experts at this meeting. You, the patient, who brings their preferences and values, and the physician. How engaged you are in the conversation, and your chosen level of autonomy, will depend on your individual personality of course. 

Your plan may be to go to your consult prepared and do more listening. You may be the type who plans go to your consult and ask, discuss, and talk as much as your physician does. Either way is acceptable. There is no “right” way to practice shared decision-making; what matters is that your voice and preferences are heard, taken into account, and you feel comfortable that you have played the role you want to play in your treatment planning.

Do your research prior to your consult

Today, mobile phones and devices are ubiquitous. They are a part of our everyday lives. Use breast cancer apps available on your phone. The Breast Advocate app is an extremely powerful shared decision-making tool for anyone diagnosed with, or at high risk of developing breast cancer.

Find an online support group that feels comfortable to you, supportive, and most importantly… encourages the use of evidence-based medicine to find answers. It’s ok to lurk initially to get a feel for the support group until you feel ready diving in. 

Ask your clinician’s office if they have any online materials, a website, trusted online support group, or information they recommend you look at prior to your visit. 

Ask questions!

No question is a silly question. This is your body, your health, your life. Whatever treatment or surgery you are there to discuss, ask what all the options are. 

Repeat things back to the clinician or write down terms, medication, and protocols when you do not understand something.

It’s ok to feel overwhelmed

If possible, consider taking a trusted family member or friend with you to your appointment(s) to listen and takes notes.

Do not take Uncle Henry who wants to sit and tell the doc about last week’s BBQ. Your advocate is there to be a second pair of ears, not a casual conversationalist. Be selective when you choose your support person. 

Once your consult has ended, ask your physician the best way to reach out if there are any further questions from the consult. Get phone numbers and emails for further communication.

After you go home, think about what took place at your consult, and look at your notes. You will almost certainly have more questions. Begin writing those down, too. Start a list and revisit it often to make sure all your questions have been answered before you make your final decision. 

Content provided by Terri Coutee, Two-time Breast Cancer Survivor, Patient Advocate, and Founder/Director of the DiepCFoundation, and creator of DiepCJourney.