Doctor Priorities vs Patient Priorities: How to Strike a Balance

A smiling woman doctor in a white lab coat speaks with a patient

 

One of the first decisions everyone diagnosed with cancer must make is choosing a treatment that’s best for them. For many patients, the decision is not an easy one, whether their options are many or few. Some patients also might find that their doctor’s priorities are different from their own. A doctor’s No. 1 priority is treating a patient’s illness or disease. But for some patients, their No. 1 priority may not be their disease.

“It’s not surprising that doctors and patients have contrasting agendas,” Danielle Ofri, M.D., wrote in a blog for the New York Times. “We come to illness from entirely different perspectives and backgrounds. Moreover, the angles of our respective lenses are mismatched.”

Coming to an agreement with your healthcare team about what’s best for you can be a unique challenge, but it’s attainable. For Dr. Ofri and one of her own patients, the challenge was “to help each other adjust the angles of our respective lenses so that our visions could come into common focus.”

So, what happens when your priorities and your doctor’s priorities don’t perfectly align? Keep reading for tips on striking a balance that works for you.

 

Communicate Your Needs & Goals

Cancer and its treatment can be disruptive to everyday life. We recognize the delicate balance between maintaining your lifestyle and treating your disease. It’s important to discuss your treatment options, questions, and concerns with your healthcare team. Let them know what is important to you so the disease can be treated effectively without compromising what matters to you. Through open and honest communication with your doctor, you can make a decision you feel comfortable with.

Here are a few examples of topics to discuss with your doctor:

  • What treatments are best for me and why?
  • What are the risks and benefits of each treatment option?
  • What side effects should I expect?
  • What can I do to feel better?

In addition to learning what your doctor feels is the best goal of your treatment, you can share your own goals around treatment. A goal of treatment may be cure, slowing or controlling tumor growth, or extending your life while maintaining quality of life.

You can also inform your doctor about any personal goals or plans you have. For example, you may want to attend a loved one’s upcoming wedding or other special event for which you want to feel your best. By communicating your goals and plans, you and your doctor can work together to decide the best treatment for you.

Discover Tips & Tools to Help You Make Treatment Decisions

Even though you don’t feel like researching your cancer, it is truly critical for treatment. The more you know, the better. Doctors don’t have time to explain everything, or nurses, so it is important to take notes or record the conversation. I record the office visit, go home, listen & write down what was said and then erase.

― Nancy, diagnosed with cancer

 

Ask About Clinical Trials

One treatment option many cancer patients have at their disposal is a clinical trial. Clinical trials for cancer are research studies that compare the most effective known treatment for a type or stage of cancer with a new approach, such as a new drug or combination of drugs. People with any type and stage of cancer should take the time to explore this possibility.

Even if your cancer is in remission, you can participate in trials that seek to improve your mental and physical health for the road ahead. Clinical trials are not ideal in every situation, but they are always worth looking into.

Find Out More About Cancer Clinical Trials

 

Reach Out for Support 

Making a decision about cancer treatment can be overwhelming. Sometimes it’s hard to know what questions to ask your healthcare team. If you aren’t sure where to start, we offer a decision-support counseling program called Open to Options®. This program can help you create an organized list of questions and topics to discuss with your doctor so you can explore your situation and choose the best treatment option for you. Open to Options is available in English or Spanish for people with any stage of cancer. Call our Cancer Support Helpline at 888-793-9355 to learn more about the program.

Cancer care is changing. Watch this short video about new models of care that can improve your life.

 

Don’t Forget Self-care

The hard decisions don’t end in the doctor’s office. Taking action in your cancer journey also includes taking care of yourself. There are steps you can take to improve your quality of life when living with cancer. Strive to make your health and well-being a priority. Choosing to face cancer head-on is a decision that empowers you to continue living your life your way.

10 Things You Should Do if You are Diagnosed with Cancer

A female doctor in a white coat shows a male patient information on a tablet screen

For many people, facing a cancer diagnosis is like nothing they have faced before. It can be a life-altering experience. One of our goals at Gilda’s Club and CSC is to help people with cancer and their loved ones become empowered. When people feel empowered in their cancer experience, they can regain a sense of control. This can help reduce anxiety while navigating a diagnosis.

Kim Thiboldeaux, author of Your Cancer Road Map: Navigating Life with Resilience, shared the following tips to help empower you on your journey.

Here are 10 things to do if you or a loved one has been diagnosed with cancer:

 

1. Ask your doctor how much time you have to make a decision and begin treatment. 

Our natural instinct is to take immediate action — to do something and do it now. This is sometimes necessary, but often it is not. I, along with the CSC, urge all recently diagnosed people to ask their doctor how much time they have to make a decision and begin treatment. In most cases, you have time to do more research, get a second opinion, and even consult with a decision counseling expert to discuss your options, personal goals, and wishes.

Discover More About Making Treatment Decisions

 

2. Know your exact cancer diagnosis and stage of disease. 

Ask questions like:

  • What is the exact name of my cancer?
  • What is the stage of my cancer?
  • Is there anything we know or can learn about my disease, such as a biomarker or genetic test, that will help guide my treatment decisions?
  • Gather the facts and write them down in a notebook.

Watch this 2-minute video about biomarker testing, then get answers to common questions about biomarker testing.

 

3. Communicate your priorities.

Write down your questions and concerns and bring them to your next appointment. Think about what it is you want your healthcare team to know about you personally and your goals as you explore treatment options together.

Get Tips to Discuss Your Priorities With Your Doctor

 

4. Bring a family member or friend with you to medical appointments.

They can listen, take notes, and ask questions during your appointments. Then they can help you talk through the information after the appointments.

 

5. Become informed about your treatment options and goals of care.

Here are some questions to consider:

  • Are there multiple treatments available? If so, what are the different treatment options?
  • What are the goals of treatment?
  • Can my cancer be cured? Or are we treating it with other goals in mind?

 

6. Ask about the risks and benefits of any given treatment. 

Questions can include:

  • How well has the treatment been shown to work in my type of cancer?
  • What are the potential side effects of the treatment and how are they prevented or managed?
  • How will the treatment be given?
  • How often will my treatment be given?
  • How much will my insurance pay for the treatment and all of the surrounding care and how much will I have to pay myself?

 

7. Get a second opinion. 

Every patient has a right to a second — or even third — opinion, and your doctor should support your desire to do so. Oftentimes people seek a second opinion from a doctor in a different cancer center or academic medical center. This helps them to explore all care options and to see if there is any new science they should know about.

Learn More About Getting a Second Opinion

 

8. Ask if a clinical trial might be right for you. 

Many people don’t realize that a clinical trial can be explored at the point of diagnosis and may be a possible treatment option early on.

Cancer clinical trials provide patients with access to new therapies. Watch this 2-minute video to learn about the purpose of clinical trials. Then, explore more educational resources about cancer clinical trials, including how to find one for you.

 

9. Take time to get to know your insurance coverage. 

Most people say you don’t really know how good your coverage is until you have to deal with a serious health issue. Ask if there is a financial counselor or social worker who can help you find out how much of your doctor and hospital bills, surgery, cancer treatment, and other medications and supportive care will be covered under your plan. Ask about co-pays, deductibles, and other costs you may have to pay.

Make sure all the healthcare professionals and the locations of care are considered in your network or that you understand what it means to be treated out of network.

Discover More About Health Insurance for Cancer Patients

 

10. Ask to be screened or talk to someone about emotional and social distress.

Please know that a cancer diagnosis can raise many personal issues, including feeling depressed, anxious, and scared or confused. These feelings are normal and are experienced by many people diagnosed with cancer.

A professional such as an oncology social worker or navigator can help you with your concerns and connect you to resources and support. Help is available, whether you are looking for someone to talk to about the stress cancer has brought into your life or other specific concerns, such as:

 

We Are Here to Help

Call Gilda’s Club Kentuckiana at 502.583.0075 to find free support. Also, our Cancer Support Helpline provides free navigation for people living with cancer and their loved ones, including access to a distress screening questionnaire.

 

While there are many new treatment options available, you must be your own best advocate. Being a self-advocate ensures the care and treatments you receive address your values, preferences, and priorities. Make sure there is transparency and honesty in the options being presented to you and that you are respected, heard, and viewed as a human being and not just a disease. This is why we must all learn to raise our voices in healthcare today.

Editor’s Note: This blog was originally published in December 2015 and has been updated for relevancy.

* * *

As a nonprofit executive, thought leader, and author, Kim Thiboldeaux continues to make her mark on the global stage by ensuring that the patient’s voice is at the center of every conversation about cancer. The publication of Your Cancer Road Map: Navigating Life with Resilience is the latest example of how Thiboldeaux is a relentless ally for patients, caregivers, and survivors. Discover more about Your Cancer Road Map and read an excerpt from the book. 

How Can Cancer-Related Side Effects Impact Mental Wellness

by Kimberly Papay Rogers, PhD

A woman wearing a colorful head scarf embraces her sister along the bank of a sunlit river

Editor’s Note: This is part of our Spotlight on Mental Health series examining critical mental health concerns that affect cancer patients, survivors, caregivers, and providers. 

A cancer diagnosis brings about much more than physical concerns. For many people, the symptoms and side effects of their cancer and its treatment can affect their mental health and well-being.

“When a person is experiencing physical side effects from cancer and its treatment, their outlook can be negatively affected by these symptoms,” notes Brittany, MSW, LCSW, a navigator for our Cancer Support Helpline.

This is especially true for people with metastatic disease, whose symptoms and side effects can be more severe. For example, one physical symptom that metastatic breast cancer patients commonly report is intense pain. Opioids are often prescribed to help manage the pain, but they can lead to another physical problem: increased nausea, a common side effect of opioid-based pain medication.

Our research team set out to understand more about the link between physical side effects and mental health among people with cancer.

Here’s what we learned:  

We examined how symptoms and side effects impact people with metastatic breast cancer. Our research showed that pain and nausea were not just physical concerns for patients; they also influenced their mental health. The more pain a patient experienced, the more likely they were to experience depression and anxiety. The same thing was true for nausea. The more nausea a patient experienced, the more likely they were to experience depression and anxiety.

Read our full research article in the Journal of Patient Experience.

There are likely different ways that pain and nausea can lead to depression and anxiety. Our research team uncovered one surprising explanation: It may have to do with how much pain and nausea interfere with someone’s social life.

“If the physical side effects impact the ability to do things such as attend to daily tasks and responsibilities, socializing, or even participating in activities previously enjoyed, which are important to our overall mental health, it can be very distressing,” Brittany explains. “Over time, this can lead to experiencing anxiety or depression symptoms.”

In our research we found that, among metastatic breast cancer patients, pain and nausea were linked with having more trouble doing work and leisure activities, including activities with family and friends. The more trouble patients faced in these areas, the more likely they were to also experience depression and anxiety.

The reverse was also true: Patients who were more engaged socially showed less severe depression and anxiety and better overall psychological health.

So, what does this mean?

Can people living with cancer improve their mental health by engaging in an active social life, even when dealing with pain and nausea? Possibly, but more research is needed before we can know for sure.

What we do know for certain is, with the right support, people can find healthy ways to cope with the symptoms and side effects of cancer. It’s important to note that people don’t have to navigate their cancer diagnosis and health concerns alone.

Did You Know?

Our Cancer Support Helpline provides free navigation for cancer patients or their loved ones by phone at 888-793-9355 or online via our chat service.

Connecting With Others Can Help You Cope: Here’s Why

For people who are experiencing side effects from cancer and its treatment, it can be beneficial to meet others who are going through similar experiences. Support groups facilitated by trained professionals offer a safe environment to socially engage and share your experiences with others.

“We’ve all felt the physical manifestations of stress and anxiety through headaches, stomach pains, and more,” says CSC’s Vice President of Partner Relations, Kelly Hendershot, LGSW, LMSW. “Similarly, when the body is in pain, the mind feels it. It’s important to have a safe space, like a support group, to process how physical pain is impacting you in all areas of life.”

Gilda’s Club and CSC have 175 locations worldwide that offer free professionally led programs for people impacted by cancer, including support groups. In these groups, pain management and the emotional aspects of being in pain are common topics, says Kelly.

“Rather than focusing on the loss of control you have when it comes to pain, the conversation often shifts to what you do have control over — prioritization,” she notes. “You may not be able to do everything you once enjoyed, but you can prioritize how you want to spend your time when the pain is manageable.”

And when you attend a CSC support group, there’s no need to hide any pain you may be feeling.

“Our groups follow a come-as-you-are mentality, which includes sharing how your pain truly makes you feel,” says Kelly. “When you are vulnerable about how the pain impacts your emotions, there begins to be a shift in mentality. You begin to gain back some control by putting a name to those feelings.”

Find a Caring and Supportive Location Near You

Support groups are just one way to connect with others when you’re coping with cancer and its side effects. CSC locations also offer programs like educational workshops and yoga classes.

“For those who are more doers than talkers, healthy lifestyle activities such as yoga and meditation can help bring calm to your mind in times of pain,” Kelly notes. “In either setting, you’re surrounded by others trying to manage the pain that comes with a cancer diagnosis or its treatment. And that community of shared experience can be powerfully uplifting.”

Do you experience nausea or vomiting? Watch this video for tips to manage these side effects.
Connect With Others Online

If you are living with cancer or navigating survivorship, but you don’t live near one of our physical Gilda’s Club or CSC locations, we have you covered. Connect with others like you through our digital support community, MyLifeLine.

When you join MyLifeLine, you can create a private site to document your journey and receive support from friends and family along the way. There are also discussion forums on a variety of cancer-related topics like Coping With Side Effects, Living With Breast Cancer, Nutrition & Wellness, and more. Members can join as many forums as they wish to connect with others like them.

Build Your Online Community Now

 

To conclude, there are many ways to connect with others when coping with cancer and its side effects. Online discussion forums, support groups, counseling, and peer mentorship are just some examples. Through these types of connections, there’s the opportunity to learn about new coping tips and strategies that have worked for others.

“By connecting with others who have been through something similar,” says our Helpline navigator Brittany, “you are getting first-hand experience of how they have lived and managed the physical side effects of cancer and treatment. This can help a person feel less alone and feel more heard in their cancer experience.”