Becoming an Active Participant in Kidney Cancer Care

Although patients with kidney cancer put their care in the hands of doctors, it truly takes a village for a patient to navigate their cancer journey, including loved ones, caregivers and other members of the cancer team. This collaborative approach may help patients digest the news they receive over time and how they respond to treatment.

As part of its “Speaking Out” video series, on behalf of KidneyCAN, CURE® spoke with Meryl Uranga, a kidney cancer survivor and a patient advocate, about working as a team with clinicians, caretakers and loved ones as support throughout your cancer journey and taking a step back to process each part of diagnosis and treatment.

Q: Why is it so important for patients to be their own best advocate, especially when it comes to their care?

A: It’s a topic that I’m very passionate (about) and have a very personal connection with. The caretakers and patients that are going to be coming in on your behalf are one of many, many patients that your doctors are going to see, that your clinicians are working with.

So you really have to take responsibility for your care, your decisions and, most of all, the empowerment of knowing what’s going on with your case. And instead of being someone who’s taking direction, you want to be in a mindset of working as a team with your clinicians. And it makes all the world of difference in terms of how your care will go going forward.

Q: How can patients make sure they’re effectively communicating with their physicians when it comes to their preference on treatment, quality of life and side effects?

A: I think like in any situation, you have to set expectations at the beginning of the relationship. You need to, first of all, choose a clinician that is going to work with you, do the things that you’re looking for and be able to communicate the way that you want to. You want to set the expectation (of ), “I want to be an active participant. I want to know what’s going on. I want to communicate. I want to be involved in decision-making.”

If you have a caretaker that you want to be involved, you need to communicate that because there are, like in any profession, certain areas they’re not going to be a good fit. You’re going to meet doctors — and I went through a few before I found mine because we weren’t on the same page. So you have to make sure that those expectations are set and they know what kind of patient you are.

There are a lot of people that are very comfortable just taking direction from authority figures like a doctor, (but) if you want to be in that empowerment mindset and you want to be a partner, you have to make sure that they want that as well. I really recommend finding that right fit in terms of experience, specialty areas and the communication style that they’re willing to provide and work with you on.

Q: How can a caregiver or a loved one also be a part of this patient-physician communication?

A: Bring them with you, introduce them, let (your care team) know that you want them there, that you want them to have the information that you have, that they will be working with you on decision-making (and that) they may be taking notes.

There are a lot of times when, unfortunately, we get not the greatest news — and it can be jarring — so you want to have somebody there with you. Again, as long as you’re all on the same page, there’ll be a tremendous working experience and relationship.

But the thing that I would stress is to make sure that is something that they allow; for whatever reason, they may not do that in their practice. So you have to get that set up — those expectations set and agreed to upfront.

Q: Looking back on your own experience, what is your biggest piece of advice for others when it comes to patient-physician communication?

A: My biggest piece of advice is born from my own experience. When
I was diagnosed, I was in a fog. I am normally a very proactive, research-oriented person. But when you get this kind of news, it’s very difficult to pick yourself up and get in that mindset right away. And so you kind of go through the motions.

My only regret and what advice I give to someone newly diagnosed is: Don’t make too many decisions until you can get your feet under you. I personally made some decisions looking back that I would not have done six months later when I got more educated and more involved in learning about what was going on.

So take a breath. Whatever is going on with you, it has been going on for some time, especially with kidney cancer because almost everyone I know — and there’s a lot of people that I know that have been diagnosed with this disease — has said that their physicians have said that they’ve had it for many, many years. It’s a very silent, quiet- growing (disease) for a while with no symptoms, no signs. You got a few more weeks, so chill. A lot of people just panic, like, “Get this thing out of me,” or “Start my treatment.” But become educated. It’s hard because you’ve got that emotional jarring (feeling), your world’s upside down, and so you have to take a breath, get some land legs and then start understanding what the next best steps are.

And if I had to do it all over again, which obviously I can’t, that’s what I would have done. What I was doing was just taking direction and advice from the people that haphazardly diagnosed me. In my case, I think it worked out OK, but within six months and recovering from two major surgeries, I was able to really understand where I needed to be for care and make those changes. Had I done that pre-surgery, I have no way of knowing if it would have been a better outcome, a different outcome. I have no way of knowing, but I highly encourage people to take that time.

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