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October is breast cancer awareness month. While there’s often a lot of noise around screening and prevention, I want to talk about finding your voice when you’re at your oncology appointments. I work with a lot of breast cancer patients who wished they had requested this or asked that question during a medical visit, but it didn’t occur to them until after the fact or they may have felt unsure of themselves. And it’s difficult to broach that topic now that the appointment is over.
Healthcare is changing
Gone are the days where doctors have all the authority and knowledge and patients come in and are told what’s wrong with them and how to fix it. Granted, I’m not saying don’t trust your medical team; they still have a lot to offer during a time of medical uncertainty. But, with the blessing and curse of search engines, you can easily look up symptoms, possible diagnosis, treatment and side effects, and seek medical consultation to confirm or deny your findings. While this might lead to misdiagnosis or unnecessary anxiety, now more than ever, patients are more likely to present at their doctor’s office looking more like this: “You recommended six rounds of chemo, but a recent study published in the New England Journal of Medicine found that women like me with early-stage breast cancer may not need chemo after all. What’s that about?”
Collaborative healthcare
The field of medicine has been calling it “collaborative healthcare.” As the name suggests, every time you go into your doctor’s office, it is really meant to be a collaboration, a partnership to a healthier you. You’re the one who has been living in your body for the past however many years; you’re the one who knows your medical history or have the means to find out whether there has been a history of cancer on either side of your family.
As a patient, you have something to offer too.
The thing is, when you feel heard, understood and your questions answered, you’re more invested in your treatment, and you’re more likely to follow recommendations that make sense to you. While you might not be thrilled about treatment itself, you can look forward to seeing your medical team because you know they care about you and have your best interest at heart.
Current reality
The reality is that there’s still a power differential between the provider and the patient. Your oncologist did go to med school and further specialized in cancer. Your degree was in business; not oncology. There is a firehose of information shared during appointments and on handouts, not to mention the emotional turmoil of needing to go through treatment. As a cancer patient, you are at a more vulnerable place. Rather than being told you need to jump and how high, this is a crucial time to find your voice and feel empowered about your own care. It is after all your body.
A push for self-advocacy
Because you’re such an important part of the treatment process, I strongly encourage you to advocate for yourself. If you’re not in a place to do so, bring a friend or a family member with you who could. The following are examples of ways to help you find your voice as you interact with your oncology team:
Do a little research, if that could help you – Emphasis on “a little”. Google does not replace medical school and decades of experience, but credible websites can help to learn a little about what might be going on with you. I say this with the caveat: for some people, knowledge is power. For others, knowledge is anxiety. Still for the rest, knowledge is power up to a certain extent, then it turns into anxiety. So, do what helps you.
Know your rights as a patient – This is the two page handout I call snooze reading. You can pick one up at any healthcare provider’s office and it shows you your rights as a patient seeking medical care. To name a few, you have the right, according to your local health department, to say yes to treatment, to say no to treatment, to change providers, to have access to records, to file a complaint, etc. You have more rights than you know. While you might fear ramifications for some of these actions, the stress of not being in charge of your own care could be worse.
Read your reports – It’s a lot of medical terminology, I know. Unless you’re also in the medical field, it can read like french. That’s the beauty of Google, you can search for terms, struggle to know what it really means, then proceed to 3) and 4). I know an oncologist who thanks his patients for reading their reports, because many people don’t.
Come with questions – You do have questions, even if you’re afraid of the answers. Your $135 visit with your surgeon is the best time to ask them. I know of a patient who goes to her appointments with her list of 20 questions. And, she brings her partner to catch the answers that goes over her head. Better to ask a silly question than to wish you had asked it after the fact.
Ask follow-up questions – Even for the over-prepared, there’s bound to be questions that are left unanswered. Secure message your doctor’s office in between appointments; you don’t have to wait until your next visit, unless your appointment is soon and you’d prefer a face-to-face.
Ask yourself, “What do I need or want?” – Being diagnosed and treated for cancer is a very uneasy time. Your world has just been overhauled. It’s okay to ask for what would put you at greater ease. Could a warm robe bring comfort during your next check up? A blanket during your four-hour chemo? Do you want to bring your special stuffed animal to every radiation treatment? Request a certain radio station during your MRI?
Ask for what you need or want – As you come upon your preferences along the way, share them. Make it happen. I know someone who asked for a surgical pen so she could go home and mark on her husband. Cancer is hard enough; let’s bring some lightheartedness into the mix.
Cancer has a way of prompting us to re-evaluate life, which could include finding your voice. You’ll never have as much medical attention given you than when you’re in active treatment. While it’s not necessarily the attention you’d like, let it be a time when you can focus on you.
Ada Pang is the proud owner of People Bloom Counseling, a Redmond psychotherapy practice in WA. She helps unhappy couples find safety and connection in their relationship. She also helps cancer thrivers and their caregivers integrate cancer into their life stories. She’s a big proponent of standing up to your medical provider, even if it’s uncomfortable in the moment. After all, when you’re already diagnosed and treated for cancer, what do you have to lose? Please take care of you.