After a diagnosis of cancer, patients often need to make decisions about their personal treatment plan. Many people feel overwhelmed or unsure of how to do this, for different reasons. 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: Talking with Your Cancer Care Team
Navigating Challenges: Managing the Cost of Your Cancer Care
Navigating Challenges: Finding Emotional Support after a Cancer Diagnosis
ASCO® Lineagotica: Doctor-Approved Patient Information
Navigating Challenges: Making Decisions about Your Cancer Treatment
Susan Chang, MD: Medical decision making is an important part of the process for any patient with cancer. And this is very important because it involves both the patients, the caregivers, and the clinicians. Clinicians have different expertise. They understand more about the treatment, the nature of the tumor, the side effects of therapies, but patients know themselves.
They know what their health is like. They know what their personal preferences are for treatment. And so this collaborative process is really important as we come to making decisions about treatment.
Sonali Smith, MD: I think the relationship between a physician and a patient has really evolved over the last several decades. I think historically the relationship has been somewhat paternalistic where the physician made all the decisions based on what they felt was all the important information and the best decision they could make. And now I think with all the information that’s available through the internet, the support groups that are there, and also a changing attitude on the part of physicians, the patient is increasingly an important part of the decisions that are there.
Jamie: I think it’s really important to be educated about your cancer but I also think it’s important to know where the information is coming from. Probably the best advice I could give someone is to ask their physician for some reference sources. You know your doctor can point you to a website that’s good or they can give you some written information that is reputable. But I sort of feel like just Googling your cancer is not a great idea.
Virginia: And you have to know where to get informed because on the Internet just like you can find good things, you can find things make you... feel worse. More than anything else, I think that this information and having to ask questions and have this conversation with... I think that this can help you. Look for help because like I said this word... Me, cancer makes me panic.
Dr. Smith: And having a patient that’s well-educated makes that conversation much more fruitful. And I strongly encourage patients to know about their cancer and about the different treatment options.
I think it’s incredibly important for patients to seek out experts who know the most about their disease. I realize this is not always possible, depending on the geography of where a patient lives. But being in contact with somebody who focuses on that particular type of cancer is very important for many reasons. I think one of the main issues is that cancer, as a field, has just exploded in terms of the amount of information that’s there.
I think a big part of the fear in getting a second opinion is that patients are worried that they’re going to either hurt their doctor’s feelings or somehow ruin the relationship that they have with their physician and so they will stay quiet. And I would really strongly advocate against that.
Jennifer Griggs, MD, MPH: Getting a second opinion, whenever possible, I think is very helpful.It’s helpful for several reasons. For one thing, it can certainly help the patient understand more about their disease when they speak to an expert in the field. And that can make them more comfortable about the treatment decisions that are being made.
So, I do think that wherever possible, a second opinion is very helpful for both patients and the treating physician.
think being open and saying, you know, I’ve really enjoyed our discussion today. I’m going to seek a second opinion. I think it will help me make a decision. That shouldn’t bother the physician. It’s about your life and it’s about your treatment, about the months, weeks, years going forward.
Dr. Chang: When you meet with your physician to talk about options for treatment, one of the aspects that they will bring up will be clinical trials. And this is just an option.
Dr. Griggs: Clinical trials are clinical studies that look at a standard treatment in general and then compare a newer treatment or a different schedule or a different dose to what’s considered standard.
Dr. Chang: And it’s very important to understand that not all clinical trials are available for all patients. There are some factors that will be very important to look for in terms of the type of tumor, the stage of their illness, and whether the patient is well enough to receive these treatments on the clinical trials.
Claudean: My doctor was just great. But she also encouraged me. There was another piece in the treatment process to participate in a clinical trial study and that was another piece of the wellness, I mean, at first in learning the whole process what I would be going through it’s like, it’s kind of daunting and was a lot. But she asked me to consider going through the clinical you know trial study and she told me the purpose of the study was to see if this at the time this particular drug would be of assistance along with chemo would help kind of maintain or not so much cancer free but would put you in a better state than it would chemo alone, particularly in my case,I listened and trusted her and I’m glad that I did.
Dr. Griggs: If you decide to participate in a clinical trial, it’s very reasonable to ask what is the burden on me because there may be more frequent visits or more frequent blood draws and the follow-up may be longer after the trial’s done than it would be if you weren’t on the trial. And with gas prices the way they are and the time you might need to take off of work following the trial or even when you’re on the trial, those are very reasonable questions to ask.
Jamie: Intellectually, yes, I knew that there’s a lot of time to make decisions. Cancer is, even a fast moving cancer doesn’t really move that quickly in the matter of a couple of weeks is not usually a life or death kind of thing and it’s definitely good to be sure that the decision you make is the right decisions. But I think it is really hard for someone who’s been told that they have cancer to then be told oh, we’ve got a few months, you don’t have to decide right now. I think that’s probably something that’s really hard to wrap your mind around.
Terry: So the stress was high, but I would say that all of us have sort of different coping mechanisms. Mine was to really get involved in trying to make the decision about what treatment I wanted to do. And so I guess my coping method was I had a job to figure out what I needed to do and I was sort of focused on doing that.
Claudean: As a newly-diagnosed patient I felt mixed emotions. I felt rushed even knowing that my breast surgeon said I had four to six weeks in terms of finding an oncologist, even though that still gave me time to do the research, you know, on different oncologists, talk to people that I’ve known that have been through the process, who do they recommend for an oncologist. But however I felt very anxious too at the same time.
Dr. Griggs: A lot of times people feel very pressured at the first consult to make a decision. And when I get this deer-in-the-headlights look in their eyes or they look overwhelmed or their spouse or partner looks overwhelmed, their family members look overwhelmed, I say, “You know what, we don’t have to make this decision today. Let’s give it some thought. I’ll see you next week and answer any questions you have.” Or call me before next week. Write them down. Bring a tape recorder. A lot of smartphones can tape the entire consult and most physicians are very open to that because it’s a way of collecting more information.
Dr. Chang: The diagnosis of cancer can be very overwhelming and scary. And many patients feel that they need to move quickly in terms of making the decision of treatment. But it’s very important when you meet with your specialist to understand the nature of the tumor, the options for treatment, and the side effects and what are the goals of treatment. And this information is important not only partnering with your physician but also to give you a sense of understanding where you’re at in terms of your illness.
Dr. Smith: As a physician, when I am trying to select a treatment for a patient, there are many medical factors that go into that final decision. I consider the patient’s age, what other medical conditions they may have.
And, of course, when it comes to the cancer itself, the exact type of cancer and the extent of involvement will often dictate whether or not we can use what’s called a local approach such as surgery or radiation or if we need to use something more systemic such as chemotherapy or biologic agents.
I think whenever a physician gives a patient a list of options, that means that there is no single best treatment. And at that point, it may be more helpful to really think about what are the side effects going to be. What is the impact of this treatment on my future fertility? What is the short term and long-term risk that I take with these types of treatments?
There’s a number of non-medical factors that also go into patient decision making. Often it has to do with pure logistics. How far is the physician’s office from where the patient lives? How often do they have to go there? Can they drive themselves? Do they need to have a caretaker or a family member take time off of work to take them back and forth?
In addition to the logistical considerations, I think what’s also very helpful and important from a patient perspective is their background in terms of cultural and religious beliefs.
Jamie: I feel like being able to talk to my doctor, being able to talk to my family and feeling like I had the information that I needed and I couldn’t make the wrong decision. It was very important to me.
[Closing and Credits]
Lineagotica®: 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
The opinions expressed in the video do not necessarily reflect the views of ASCO or the Conquer Cancer Foundation.
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