>> So how was your doctor's visit?
>> Fine, I don't need to see him again for three months.
>> What he'd say about your dizzy spells?
>> Well, I guess I forgot to tell him.
>> Really! Well did you tell him about your trouble sleeping?
>> No, he didn't ask about any of that. We talked about my blood test and scans and all of them were normal. Besides, I feel fine today and after getting good news, I didn't want to spoil the visit.
Dr. Harpham: Similar scenes play out repeatedly all across America. The patients return home after doctor visits with only some of their questions answered and only some of their symptoms addressed. It doesn't have to be this way. I'm Wendy Harpham, a doctor of internal medicine and a cancer survivor. Since my original diagnosis in 1990, I've been through a variety of cancer treatments, surgery, radiation, chemotherapy, immunotherapy. From both sides of the stethoscope, I have experience the difficulties of preventing and treating side effects of cancer treatments. I have also seen as both a doctor and a patient how talking about side effects at doctor visits helps patients get good care and live as fully as possible while in treatment. So let's explore healthy ways to talk about side effects with your healthcare team.
Simply put side effects are a changes and problems that occur during treatment and are due to the treatment not to the disease. Despite dramatic progress in cancer care, side effects are still common place. This is because almost all therapies that kill or control cancer cells also affect some of your healthy, noncancerous cells as innocent bystanders. If the impact on noncancer cells is great, or if your body can't compensate for any changes, obvious side effects can develop. Conversely, if the impact of cancer treatments on noncancerous cell is small or if your body can compensate well, side effects can be mild or not even noticeable. Unfortunately, most side effects are unpleasant such as nausea, hair loss, fatigue, numbness of your fingertips and impaired short term memory. Which side effects you might develop and when, is determined by the dosage and the intensity of your treatment as well as by individual factors such as your overall health, your body sensitivity to certain elements. That's why if two patients received the very same treatment, one patient's side effects might be mild, while the other patient's side effects might be severe.
For you to get good care and live as fully as possible while being treated for cancer, ask yourself. Do my doctors know which side effects I'm experiencing? Do they know how these side effects are impacting my daily life? Many times the answer is "no" unless you've told them. Yet it's not unusual for patients to withhold information about their side effects. Here are only some of the reasons patients might not report unpleasant symptoms at doctor visits.
>> I get so nervous waiting to hear my test results that my mind goes completely blank.
>> I'm worried that if I ask my doctor about minor problems like not sleeping, I'll distract her from taking care of my cancer and I don't want her to think I'm a complainer.
>> He saw my test results so he knows how I'm feeling. I'm sure he would have mentioned it or written a prescription if he could do something to help me feel better.
>> Tell my oncologist about nausea, complain about not sleeping through the night? Nah, I'm not gonna say anything. I can handle it.
>> I have cancer, this is how cancer patients are supposed to feel.
>> I heard that if patients complain about side effects, their oncologist lowers the doses of chemo or radiation. I don't want to hurt my chance for a cure.
Dr. Harpham: As I went through various courses of cancer treatment, occasionally, I felt hesitant to report new symptoms. Even though my oncologist always welcomed my questions and concerns, I was still afraid of bothering him with too many minor complaints. I knew how busy he was and that many of his other patients were sicker than I was. Once I didn't want to say anything about a new symptom because at the time, I was so tired of all the tests and scans and doctor visits. I felt completely doctored out. I knew, if I told my oncologist about the new symptom, he'd probably order tests to figure out what was going on, so I didn't want to tell him. I supposed it's possible on some level that I didn't want to disappoint my oncologist by having a tough time with the treatments he prescribed. I wanted to be one of his success stories.
Doing the right thing for my own health was sometimes a struggle. What helped me most was the realization that more than I wanted to avoid bothering my oncologist and more than I wanted to avoid tests and scans, I wanted to get well. For that to happen, I had to find ways to talk about everything that affected my recovery, including my side effects. Reporting your side effects is so important because untreated side effects can drain physical and emotional reserves that could be better used toward healing and because during treatment, feeling as well as possible is an important element of getting through treatment and getting better. Reporting your side effects is so important because in many cases, your physicians can prescribe medications or treatments that alleviate your symptoms without interfering with any of your cancer therapies. And in some cases, physicians can adjust your cancer treatments in ways that decrease your side effects without decreasing your chances of recovery. Even if you're dealing with side effects that are not treatable, you need to report them. You're physicians use all this information to help prevent complications and to help you manage your expectations about the upcoming days and weeks.
Dr. Baile: I need my patients to tell me what they're experiencing. I want my patients to tell me what they worry about.
Dr. Harpham: Remember, you are not just another cancer patient. You are unique, as are your body's responses to cancer therapy. Your physicians can prescribe the best therapies for you if and only if they know exactly how you are feeling both physically and emotionally. And the only way for them to know is for you tell them. Here are some tips that have helped me and many other patients overcome any reluctance to reporting side effects. Doctor visits are not social visits. While some doctors enjoy a few minutes of chitchat to help everyone relax and to connect on a personal level, the main objective of the visit is to take care of your health. Talking with your healthcare team about your side effects is not complaining, rather, you are reporting vital information your healthcare team needs to do its job well.
Dr. Baile: Oncologists depend upon their patients to report side effects. Your physicians can only address problems they know about. To be candid, all the sophisticated tests in the world cannot tell your physicians how you feel. And no matter how brilliant and compassionate, they can't read your mind. So if you don't tell, they can't help.
Dr. Harpham: We said this before but it's worth repeating. Whether we're talking about your cancer or your side effects, your doctors ultimate goals are to help you get and feel as well as possible. To reach these goals, in addition to listing which side effects you're having, tell your healthcare team how these symptoms are affecting your daily life. For example, if you have nausea, let your doctors and nurses know. Is it just a little bothersome or is it affecting what you eat? Is it preventing you from going anywhere you can smell food? Let's say you're having trouble sleeping. Tell your healthcare team if the trouble is occasional or a nightly affair. If it's just annoying or leaving you anxious and exhausted. Regarding pain, let your healthcare team know if it's mild and easily ignored or severe and disruptive. Does it keep you from sitting at the computer, riding in a car, doing a grocery shop? One way to communicate meaningful information quickly is to describe for your physicians a pleasurable activity or hobby you can no longer enjoy because of pain or other side effect. Many patients do believe in the value of reporting all side effects. But at their doctor visits, they still don't say anything. Even though I'm a physician who knows full well, I need to report my side effects. I've had times when my emotions made it difficult for me. The bottom line, sometimes it's hard to do what you know to be the right thing. I found it extremely helpful to simply explain what I'm feeling about reporting my side effects. For example, I remember one particular time I developed a symptom I can only describe as odd. It was embarrassing, so I told my oncologist, I know this sounds wacko and I sound like a kook but I've developed this odd symptom. Then I told him more about it and we took care of it. By sharing my uncomfortable feelings along with my description of the symptom, it was easier for me to talk about the side effect, and easier for him to respond. Embarrassment is only one of a variety of emotions and situations that can make it difficult for patients to report side effects.
>> I'm afraid to tell you about something that's been happening because I'm scared you'll tell me it's something bad.
>> To be honest, I don't want to tell you this because I really can't afford to have any more blood tests or scans now but I've got a new symptom.
>> You really don't need to do anything about it. It's mild. It's not interfering with anything that I do.
Dr. Harpham: If despite your best efforts, you still feel uncomfortable talking about side effects, that's okay. There are other ways to communicate this vital information. You may feel more comfortable telling your nurse or you may prefer writing down your symptoms before the visit and then handing your list to your nurse or doctor. Some patients bring along a relative or a friend who can relay the information to the healthcare team. Modern medicine is making great strives in developing targeted less toxic cancer therapies. Yet most cancer patients today still face the challenge of side effects. You have a right to feel as well as possible during treatment and you play a key role in making that happen. So talk about side effects with your healthcare team. Doing so can help you get good care and live as fully as possible, today, tomorrow and every single day.
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