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.
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.
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.
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.
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:
- How to talk to your kids
- Managing challenges at work
- Financial and insurance concerns related to your cancer care and treatment
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.
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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.