After a diagnosis of cancer, many people find it difficult to talk openly with the doctor and other members of the cancer care team. This is for different reasons including fear and shock, medical jargon, and language barriers. This video offers guidance on how patients can navigate these challenges.
This video offers perspectives on this topic from both survivors and health care professionals. It is being offered through a four-part “Navigating Challenges” series for people newly diagnosed with cancer facing real-world barriers to high quality cancer care. This ASCO patient education video series was made possible by a grant from the LIVESTRONG Foundation to the Conquer Cancer Foundation.
Other Videos in This Series
Navigating Challenges: Making Decisions about Your Cancer Treatment
Navigating Challenges: Managing the Cost of Your Cancer Care
Navigating Challenges: Finding Emotional Support after a Cancer Diagnosis
Full text transcript
Cancer.Net®: Doctor-Approved Patient Information from ASCO®
Navigating Challenges: Talking with Your Cancer Care Team
Karen Winkfield, MD, PhD: Trust is an incredibly important concept, particularly when dealing with cancer diagnoses. Anytime folks hear that word cancer, there’s automatically a fear that’s associated with that. So, I think it’s important, particularly for a provider, to make sure that they are open to listening and really very much I think welcoming in terms of their approach. Oftentimes people come in and they’re so terrified they don’t even know what to ask.
Virginia: To start, you have to be informed.
Because this was my case, I wasn’t... already... with just one word to me, I got scared. Because all of my family died from cancer in my country. So, I believe that the panic that I felt was what brought me to the point of that pressure that perhaps prevented me from asking the questions that I needed to ask.
Desiree: When I went for my first consultation with my breast surgeon, she said something to me that you know has resonated, has stayed with me over the years. And she said realize whoever you choose as a doctor is going to potentially be with you for the rest of your life because after a cancer diagnosis, you will always need to be followed or screened, etc.
And so that helped me to realize the importance of making sure that the medical team that I created were people that I could connect to, that I could communicate with because they do, they are actually an extended family.
Dr. Winkfield: So, I recommend that particularly with an initial consultation with an oncology provider, that patients bring a family member or a friend, someone who could also help to advocate on their behalf because there’s going to be a lot of information that’s delivered at the time of that initial consultation that sometimes it’s so overwhelming you don’t know what questions to ask.
Susan Chang, MD: having patients be aware of what questions to ask their particular physician but also to have this open dialogue about what’s important to them. How is it that they want their lives to be? What are their important goals?
What is it that they’d like to see in the next year or two? These are all the types of discussion points that should be covered when you’re talking with your physician about the next step for treatment.
Claudean: Sometimes in terms of being able to express and communicate the need there’s some people that are unable to do that and my advice still would be write a list, just write it down and submit the list you know if you’re unable to open up. Some people are, some people aren’t. But I think that part of opening up is a success of the treatment; your oncologist has to know what you’re feeling, you know, and it just has to be a match there because you’re going to spend time together.
Dr. Winkfield: There may be times where people do not feel that it’s okay to question a person that they consider to be an authority figure. Physicians traditionally many, many decades ago did have this concept of being an authority figure. So, there may be people of older generations that don’t feel comfortable asking questions. Similarly, our population is becoming more diverse. So, people are coming from other countries and they may not feel comfortable with asking questions of their provider.
If you feel uncomfortable about talking about certain things, it’s okay to even share that information. It may not be that you share it with the physician. You may share it with someone else in their office. It might be a nurse. It might be a medical assistant. And then that information can be then relayed to the physician who can then help you feel more comfortable sharing that information. And again, this is where having someone with you can sometimes help.
I actually use the analogy of if you moved to a new city and you saw a police officer and you wanted to get directions somewhere, that if you didn’t understand the directions, it’s important to ask for clarification. Otherwise, you’ll never get to your destination. And similarly, when you’re dealing with cancer, this is a journey. Cancer treatment is a journey. So, it’s important to know and to be able to understand what directions are being given.
Robert Maki, MD, PhD, FACP: We say this over and over again that the only bad question is the one that you didn’t ask. And I guess the corollary to that would be is the only one that wasn’t answered to your understanding as well. So, if it is something that you don’t understand, then I think it’s absolutely critical that you have clarification on just what they meant when they were answering your question as well.
Donna: As far as medical jargon goes it was an overwhelming experience and I used a nurse navigator often when I left the doctor’s office with my notes and called her up and said I don’t really understand this, can you explain it to me. Also the oncology counselor was another person.
Dr. Winkfield: I love when patients, you know, interrupt and say, “Can you explain what that means?” It’s really important for patients to advocate on their own behalf.
Alejandro Muzio: for patients who don’t speak English well enough they should really communicate with their providers and ask what type of language services are available to them. If it’s an in person interpreter or if it’s a telephonic interpreter and make sure what the provider can have available for them, not only in the first visit but every single time they come to see their doctor.
Magda: I had that barrier. Because sometimes the doctor spoke so fast and I was so in shock, as they say. I didn’t understand what he was saying because he spoke and like they say, it went in one ear and out the other, but I was like that. And I wondered, “Why not ask this, why not ask that.” So I asked the doctor... to please have an interpreter come so that he or she could help me with the language. Because there were terms that I didn’t understand.
I asked her, the interpreter, what I wanted to know. What was the treatment going to be like, how long would I have to take it, what would happen next, umm, things like that. I mean I tried to ask her about all of my concerns and sometimes the doctor, well, he spoke with me too. I understand a little English, so I tried to talk to him, things that I didn’t understand, she helped me with. But yes, the help of an interpreter is very, very important when...when it’s not your language.
Alejandro Muzio: The interpreter is there to basically bridge the language gap and try to get out of the way as much as possible. Our goal is not only to provide language services but also to help the patient and the provider to communicate with each other as if the patient spoke English.
Dr. Maki: And that way you can be sure that there’s as much fidelity as possible in the terms that are translated. Otherwise, even for native speakers, you know, medicine is really a different dialect in and of itself, a different language. And unless you have people who are professionally trained, you might lose some of the fidelity that’s important to make sure the point is clear. So, this is also where, for example, a relative may not be the best person to serve as that translator.
Alejandro Muzio: Hospitals that participate in federal programs, Medicaid, Medicare are mandated by law to provide language services for free to the patients. And in those cases the hospital will be the one scheduling the interpreter whether it’s an in person interpreter or making arrangements to use the telephone for services.
Dr. Winkfield: And a way that I kind of do a double-check is sometimes I’ll ask a patient, you know, so can you tell me what we just discussed? Can you tell me what the plan is going to be moving forward? That gives me an opportunity to hear from them in their words what’s going to happen or what the potential side effects of a therapy might be. It’s another way for me to double-check to make sure that even though they’re sitting there nodding their head as if they understand, that they really do.
Claudean: would say to any cancer survivor do not walk away until you get a complete understanding. That understanding would be the success in your wellness journey. If you don’t have that understanding then it poses more stress you know in the process. Stress is not good to have as you’re going through such a critical process. And so always remember do not walk away if you don’t have that understanding. No matter how long it takes get the understanding so when you walk away you’ll feel good about knowing what the next step in your process is.
[Closing and Credits]
Cancer.Net®: Doctor-Approved Patient Information from ASCO®
ASCO's patient education programs are supported by Conquer Cancer Foundation of the American Society of Clinical Oncology. ConquerCancerFoundation.org
Dr. Mary Wilkinson, Dr. Raymund Cuevo, and the staff at Medical Oncology & Hematology Associates of Northern Virginia
Carolyn B. Hendricks, MD, The Cancer for Breast Health
Hasbro Children’s Hospital
Helen F. Graham Cancer Center at Christiana Care Health System
The Adele R. Decof Comprehensive Cancer Center at The Miriam Hospital. The Miriam Hospital is a teaching hospital of The Warren Alpert Medical School of Brown University
Video Footage and photography courtesy of:
St. Jude Children’s Research Hospital Biomedical Communications
Moffitt Cancer Center
University Hospitals Case Medical Center Seidman Cancer Center
The opinions expressed in the video do not necessarily reflect the views of ASCO or the Conquer Cancer Foundation.
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