Knowing what to ask about your bladder cancer treatment can help you feel more prepared and confident in your care. Bladder cancer specialist Dr. Ashish Kamat shares key questions to ask about treatment goals, schedules, and side effects – emphasizing why speaking up about symptoms is never a bother to your healthcare team.
Dr. Ashish Kamat is a Urologic Oncologist and the Director of the Bladder Cancer Support Program at University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Kamat also serves as the founding President of the International Bladder Cancer Group (IBCG). Learn more about Dr. Kamat.
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Transcript
Katherine Banwell:
When choosing a therapy, what questions should patients ask their healthcare team about a treatment plan?
Dr. Ashish Kamat:
The first thing the patient should ask their healthcare team is: What is this therapy, what does it mean, and how long do I have to take it?
Because setting that timeline is very important. It’s very important for the patient to adhere to the schedule. It could be the best treatment in the world, but if the patient is not able to adhere to the schedule, then we have to choose a different treatment for the patient as long as there is an option. Sometimes the cancer is metastatic. We really don’t have an option because that’s the only thing that works. But so long as there are options, the treatment schedule and the patient’s ability to adhere to the schedule are very important. Obviously, understanding the goals of the treatment is important. Is this treatment meant to cure the cancer? Is it meant to put it in long-term remission? Is it periodic remission?
What’s the goal of this treatment is also very important. If a patient, for example, embarks on a journey of treatment and then there is a recurrence of tumor in the bladder, the patient might feel, “Oh, this treatment didn’t work.” Whereas we’re like, “No, it worked. It changed the recurrence from a dangerous recurrence to a recurrence that is really low-grade and means nothing in the grand scheme of things.”
But the patient needs to understand the goal upfront. And then, of course, understanding toxicity data, what are the side effects, all those as much or as little as the patient wants to know. There are some patients who love to get literature after literature on the treatment. That’s great. And some patients say, “No, just give me the overview. Just tell me in broad terms what I need to look out for and who I can reach out to if I’m having trouble on the treatment,” which is the key question to ask. A patient should not sit at home and try to Google side effects and try to deal with things on their own. They should feel free to approach their team with questions and, of course, if they’re having trouble with the treatment.
Katherine Banwell:
People can sometimes feel like they’re bothering their healthcare team with their comments and questions. So, why is it important for patients to speak up when it comes to symptoms and side effects?
Dr. Ashish Kamat:
So, it’s never a bother. If you’re reaching out for advice and if you’re reaching out for guidance, it’s never a bother. And the reason patients should reach out for guidance and advice is that if they don’t, then we can’t tailor the treatment, modify, or adjust the treatment to provide the best cure or result for the patient.
So, reaching out is clearly important. Now, of course, I think what you’re alluding to is the fact that some patients feel that they’re going to be a bother if they’re reaching out with minor things. But patients don’t know what’s minor. So, send the message to MyChart. Most hospitals usually will have someone that’s monitoring that. They’ll get back to you in an appropriate amount of time. But clearly, if you feel something is life-threatening, as you mentioned earlier, just go to the emergency room.
I’m not saying sit at home if you think something is life-threatening. But even if it’s a minor question in your mind, it may not be minor to the physician. But because of this perceived I’m going to be a burden thing, there are efforts underway, and I’m sure you and your audience are familiar with this, of trying to develop these AI-based responses.
I think it’s similar to what customer service is doing in other fields. It’s a little dangerous in medicine because who knows if the AI is going to hallucinate. But for common questions: I had this put in yesterday. I have a low-grade fever. What do I do? For example, those are common things that the AI responds to; so long as they are vetted, they are reasonable ways to look at it.
Katherine Banwell:
I know that patients can often feel overwhelmed, and it seems to me that it’s a good idea to have a care partner in with the patient during appointments just in case the patient is so anxious and nervous, then the care partner can maybe take notes and remember a lot of what the discussion was about.
Dr. Ashish Kamat:
Yeah, you’re absolutely correct. And one of the questions I always ask a patient when they’re in the room with me, I say, “Is there anybody else you want to bring in the room?” Because sometimes they’ll come to the appointment with three people but only bring one in the room. I’m like, “No, anybody else you want to bring in, bring them in.” If they’re sitting alone, I will often say, “Do you have someone you want to put on the phone? Is there someone you want to have listening in because you’re absolutely right. The more people that are involved, the more people taking notes, I love it when a patient’s daughter, son, or spouse is actually writing down things.
I joke, “Are you writing a textbook, or what are you doing?” But I like it because that way you don’t forget things or sometimes misinterpret. A patient might think if somebody says, “You have X percentage recurrence,” they may think, “Oh, I’m going to die X percentage of the time.” And the person who’s taking the note can go home and say, “No, no, no, that’s not what it means.” So, it’s very important to involve your care circle in the actual physical appointment.