Cancer Patient Advocacy: How To Communicate With Your Healthcare Team

Something that comes up often in my work as a cancer coach is the concept of advocating for ourselves as patients. Cancer patient advocacy isn’t something that’s talked about often enough, in my opinion, so in this post, I’m sharing my best advice for having conversations with your healthcare team and ensuring that your voice is heard. 

It’s important for us as patients to let our doctors know that we want to be informed throughout our journey with cancer, but sometimes it feels like we’re not empowered to have that conversation. 

Whether you have been recently diagnosed with cancer, are in survivorship, or are somewhere in between, this post will give you tips on having those conversations with your providers and ensuring you’re heard. 

Cancer Patient Advocacy Means Being Part of the Care Team

When it comes to how we approach our own care, we need to work collaboratively with our care team. Sometimes it can feel like there’s a power imbalance–like they are in charge, and we are there to do what they suggest, when in fact, it should be a two-way conversation.

I share this with clients often, but my best piece of advice is to think of yourself as a member of the care team. You’re all working together to find the best solutions for you. 

You don’t need to only approach the situation as one simply taking direction; instead, you should always feel free to question things that you’re not comfortable with, bring up alternative ideas when appropriate, or simply ask for clarification when you need it. 

In our healthcare system, it’s important for us as patients to be our own advocates. And this can often mean communicating with one member of your care team about what was discussed with another. Depending on how your cancer center is structured, you may see multiple providers, nurses, etc., and you may have to do a little legwork to keep each in the loop and apprised of updates. While they will document your visit in their notes, of course, the details from your discussions are not always included, and you may find yourself having to fill in the communication gap. 

How to Speak Up During Medical Appointments

It can feel intimidating at times to speak up to your doctor (which is why I suggest looking at your role as an active member of the care team), but you also want to be sure that your primary oncologist is one you feel comfortable talking to. 

If they’re not, you could consider looking around (seek out recommendations from friends, family, or your community) if needed. Or, find someone on the team with whom you do feel comfortable talking openly. Depending on the structure of your clinic, you’ll likely see multiple providers, so whether that’s a nurse, nurse practitioner, or PA, finding someone on your team who is a safe space for you is invaluable.  

Also, remember that you don’t need to feel rushed during your appointments. They often go by quickly, but don’t feel like you can’t ask your questions because the appointment is short. Your providers are there for you, so feel comfortable taking the time to ask the questions and bring up the discussion topics that are important to you. They may be busy, but this is your chance to see them and ask what’s on your mind!

The Foundation of Cancer Patient Advocacy: Asking to Be Informed

It’s a great idea to let your provider know early on, when you are first diagnosed, that you want to be well-informed as things progress. But it’s also okay to have a reset around communication expectations anytime throughout your journey with cancer. 

Have a conversation with them about how you want to have open communication, and you want to know the details (such as the why behind their decision-making when it comes to your treatment plan), or alternatives that could be available (even if they didn’t offer them to you at first). 

Remember, they are there for YOU. 

How to Prepare for Doctor Appointments 

Finally, here are some practical tips for preparing for your appointments to ensure your voice is heard: 

• Bring someone with you who can help you absorb the information and speak up on your behalf if needed. Especially when we are first diagnosed, our brains tend to still be in shock, which makes it difficult to retain and remember the information that was discussed in appointments. It can also be helpful to bring the same person, or the same few people, with you to your visits. This way, you’re not always having to translate the latest updates between your caretakers or family members, and you can have someone who is there supporting you and helping you take notes who is familiar with your case.
  

• Keep your notes in one place. I recommend either bringing a favorite notebook (dedicating one specific notebook to your medical appointments can really help keep things clear) or, if it works better for you, use a note-taking system on your phone to keep track of everything.
  

• Prepare your list of questions before your appointment. Having things organized before you walk into the room will help you make sure you don’t miss anything you had been meaning to ask or bring up. Since those visits do go quickly sometimes, having the info written down and handy means you don’t have to rely on yourself to remember it all in the moment. 

Lastly, don’t be afraid to communicate outside of appointments, either. Whether your provider uses a patient messaging portal, email, or something else–use it! You don’t need to wait for your next visit to bring up something that you’re wondering about. 

Cancer Coach & Therapist

As a cancer survivor myself, I understand how difficult it can be at first to speak up and advocate for yourself with your care team. But from my experience, it makes a world of difference. I was very upfront with my doctor at the beginning, letting him know that I wanted to be completely informed all along the way, and that really impacted my treatment and outcome. 

If you’re struggling with this, however, I would be happy to talk it through with you. As a therapist and cancer coach, I help my clients figure out how to have these conversations with their team all the time. I encourage you to reach out and schedule a complimentary consultation to see if counseling would be a good fit.  

Reach Out To Cathy