Guide to Self-Advocacy

Self-advocacy is the action of representing oneself or one’s views or interests. In simple terms, this means making your voice heard! For breast cancer patients, self-advocacy is  crucial. Only by advocating for yourself can treatment decisions take your views into account. 

At Be the Choice, we are passionate about self-advocacy. It’s partly what led to the creation of the Decision Trees. We want to promote self-advocacy, empower breast cancer patients with knowledge and help them make decisions that are best for them. This means speaking up for yourself at the beginning, middle and end of treatment. 

That said, let’s not kid ourselves, self-advocacy is hard, especially when you’ve been recently diagnosed. The news of a diagnosis is shocking, exhausting and overwhelming. It’s hard to advocate for yourself in this situation. 

This is partly why we wanted to share these tips to help get you started: Practicing Self-Advocacy

  1. Know your cancer: 

Know what kind of cancer you have, what stage you’re in and Understand your pathology report. So many decisions are made based on these three factors. If you understand these, you’ll be able to ask more informed questions, and understand the responses. 

 

  1. Bring a buddy: 

Ask a friend or family member to go with you to all medical appointments – preferably the same person if possible. Studies show that patients remember about 10% of what is said in these appointments. No wonder – it’s an overwhelming time!

The best buddies:

  • Take detailed notes
  • Write legibly
  • Are punctual
  • Tell really good jokes
  • Stand in to support the patient if they lose their voice
  • Support the patient in ways that are helpful to them (i.e. don’t contradict the patient, think they ‘know best’, speak over the patient)
  • Are able to remain objective

 

  1. Binder-it, seriously:

Keep track of your tests and results and take these to your appointments. It’s best to use a 3-ring binder to house it all. Maybe divide it by treatment, or timeline – depending on what makes most sense to you. It’s incredible how easy it is to lose track of what tests have been done and what the results have been. Sometimes even the doctors get confused! Medical appointments are relatively short. Easy and quick access to this information, particularly during medical consultations, saves time and keeps meetings on track. 

 

  1. Do your research:

Know what treatment options are available and what the pros and cons of each are. Discuss these with your medical team. Treatments vary and it’s up to patients to understand their situation and make decisions that are right for them. Plus, your voice is more likely to be amplified and taken more seriously.

 

  1. Find your people:

Get in a group. Seriously. We know, we know, this is controversial. We’ve heard so many people bristle at this. They think that people in support groups sit around and take turns crying. Maybe some groups are this, and that’s ok if it works for them. If this isn’t your vibe, find another group. The point is that cancer patients go through stuff that only other cancer patients understand and it’s good to be in the company of people who get where you’re at. Plus, it’s a great way to find out about treatment options, get tips on great doctors and free parking at hospitals. Think of other cancer patients as a treasure trove of information and tips. 

 

  1. Choose your medical team carefully:

We all have choices in terms of who we consult for our medical care. Yes, even in Canada. In fact, especially in Canada. Think of your doctors as people who apply to be on your care team. These are people who will help you navigate options through an incredibly tough time. Think about what qualities you need to feel supported and seek out people who have these qualities. Remember, when it comes to your medical team, you don’t have to settle. If there is someone on your team that doesn’t support your ability to heal, it’s your right to find someone else that is a better fit. When you meet them for the first time, use it as an opportunity to interview them to be on your care team. Here are a few questions you may ask them (but ask your own as well!):

  1. Describe how your training at the University of XX helps inform your advice for me today?
  2. Which treatments do you prescribe most often, and why? 
  3. What factors do you consider when making a treatment recommendation?
  4. What is your favourite medical journal and why?
  5. Tell me about the last article you read that may relate to me.
  6. Could you describe your relationship with risk? 

 

  1. Understand medical sub-specializations:

Know what kind of doctor you are seeing and what their specialization is. All doctors are trained in specific fields of knowledge (specializations) that offer certain toolkits (treatment options). You need to know what kind of doctor you are seeing so you can ask questions they can answer. Be inquisitive and commit yourself to learning as much as you can. Not sure where to start? Check out our Decision Trees to get an idea of what treatments are available.

 

  1. Know your doctor

Know who your doctor is and what they know best. Know their name, where they were trained and what their fields of specialization are. Have they spoken to, or know, the other doctors on your team? If you can, connect with them on a personal level!

 

  1. Self-care, seriously:

Take self-care seriously at all times, but especially during treatment. Think about what puts a smile on your face and make it happen around you. Is it that person who can make you laugh, no matter how bad their humor is? Is it that meal that gives you joy and comfort? Is it going for a walk while listening to your favourite tunes? Whatever makes you happy, have it around you. The more you feel grounded in you, the stronger and more powerful you will be through this process.

 

Follow along with us on Facebook, Twitter and Instagram over the next couple of weeks to dive deeper into these tips and share your own with the Be the Choice community!

 

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Welcome to the BTC Treatment Decision ToolHave you or someone you love recently received a diagnosis of breast cancer?

Whether you received a diagnosis yesterday or three months ago, you are likely dealing with an upheaval in your life as you’ve known it. Perhaps you have also started the process of meeting with your doctors to discuss what treatment options are available, and which therapies (or combination of therapies) will be the best for you. It is a lot of information to sort through and make sense of.

So we’re here to help.

The team at Be the Choice are a diverse group of women and men who have had experiences with a breast cancer diagnosis and treatment. Some of us have undergone treatment for breast cancer, some of us have provided care for a loved one who has been through treatment, and some of us are physicians and other health care professionals who provide treatment to breast cancer patients.

United in our concern that all people who receive a diagnosis of breast cancer should have access to comprehensive, state-of-the-art treatment information in a comfortable and user-friendly format, we designed this interactive treatment decision tool.

How to use:

Your diagnosis of breast cancer has come with an assessment of your unique clinical and hormonal characteristics. These should be carefully discussed with your medical team and deliberated carefully in advance of any treatment decisions.

This tool will enable you to get to know the “big picture” as well as the “individual picture” behind any breast cancer treatment decision, and to become an active participant in determining your own treatment process. You are the ultimate decision-maker in this process. We hope that you will use the information on this website to inform and empower yourself.

What this tool is not designed to do is deliver individual treatment recommendations. It should be used as a way to get a sense of the full range of treatments available to you as well as what your own treatment plan might look like given your unique profile.