This week’s blog post is by Kim Thiboldeaux, CEO of the Cancer Support Community. This blog post also appears this month in the Huffington Post, and you can read more of Kim’s Huffington Post blog posts here.
I seem to be getting more and more calls from people just diagnosed with cancer who simply don’t know where to start and what to do. These people come from all walks of life and many are smart, highly successful individuals. But facing a cancer diagnosis is not like anything they have faced before. It’s monumental, life-altering. They feel overwhelmed and their world has seemingly spun completely out of control. One of our goals at the Cancer Support Community is to help people with cancer and their loved ones become empowered because with that feeling of empowerment comes a feeling of control and a reduction in anxiety.
If you, or a loved one, are newly diagnosed, following the steps below can make a tremendous difference as you begin your cancer journey:
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 is not. I, along with the counselors at The Cancer Support Community, 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 diagnosis and stage of disease – gather the facts and write them down in a notebook. Ask questions like:
a. What is the exact name of my cancer?
b. What is the stage of my cancer?
c. Is there anything we know or can learn about my disease that will help guide my treatment decisions such as a biomarker or genetic test?
3. Write down your questions and concerns in advance of your appointment and bring the questions to your appointment. Think about what it is you want the health care 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 to listen, take notes, ask questions, and help you to talk through the information after the appointment.
5. Become informed about your treatment options and goals of care.
a. Are there multiple treatments available? If so, what are the different treatment options?
b. 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.
a. How well has the treatment been shown to work in my type of cancer?
b. What are the potential side effects of the treatment and how are they prevented or managed?
c. How will the treatment be given?
d. How often will my treatment be given?
e. 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 in order to explore all care options and to see if there is any new science they should know about.
8. Ask if there might be a clinical trial that is 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.
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 of the health care 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 diagnosis of cancer 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 brief distress questionnaire and a discussion with a professional such as a social worker or navigator can help you with your concerns and connect you to helpful resources and support. Whether you are looking for information on how to talk to your kids, challenges at work, information about financial and insurance concerns, or are just looking for someone to talk to about the stress cancer has brought into your life, help is available.
With 77 million baby boomers in the U.S. and an expected shortage of health care workers, care can sometimes feel rushed and glossed over. While there are many new treatment options available, you must still learn to be your own best advocate in order to ensure that the care and treatments you receive address your individual values, preferences and priorities — to make sure there is transparency and honesty in the options being presented to you — and to ensure 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 health care today.
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