Editor's Note: This store is part of our feature "Living With Cancer: Lessons and Advice from Kris Carr" which was originally printed in the Special Report "New Answers for Cancer" from Scientific American.
Rather than surrendering to despair and impersonal medical treatments, growing numbers of cancer patients are empowering themselves with information and control over their therapies. The trend is finding acceptance in mainstream medicine and helping people with cancer lead healthier lives.
The experiences of author and filmmaker Kris Carr, who was diagnosed with a rare, incurable malignancy, illustrate how successfully one can manage cancer as a chronic disease.
The following resource guides offer tips on developing a strategy for managing the illness, asking the right questions of physicians and getting the right professional and personal support.
1.You Have Cancer: Now What?
Diagnosis: cancer. Your head is spinning, and you feel like the wind has been sucked out of you. In a split second, life as you knew it is gone. “Getting diagnosed throws your entire universe into a free fall,” Carr writes in her 2007 book Crazy Sexy Cancer Tips. “There’s no sugarcoating it: cancer is a devastating blow, one that takes time to process.”
The first things you should do (after taking a deep breath and trying to chill):
- Find the best doctor for your disease: Be willing to travel and always get second, third and even fourth opinions to make sure that you’re getting the best treatment.
- Design a healing plan: Pull together a team of Western physicians as well as integrative doctors (to teach you how to build up your immunity and spiritual grit) to create the best get-healthy recipe. Ask family and friends to chip in and scour the Internet and bookshelves for information. “If you want to heal, you have to take initiative, have a voice and use it,” Carr says.
- Focus on lifestyle changes: “The only thing that you can control is what you eat, what you drink and how you move,” Carr says. She recommends exploring healthy diets, exercise and alternative therapies such as massage, yoga and meditation to boost and maintain your physical and emotional well-being.
- Create a support system: “Nobody understands you quite like another cancer survivor,” Carr says. “There is incredible strength in that.”
- Live! “Don’t wait for permission to live. Just because you have cancer does not mean that your life is over,’’ Carr insists. “Start living. It’s that simple.”
2. Questions to Ask
Studies show that cancer (and other) patients who arm themselves with information typically fare better and experience fewer side effects than those who simply follow doctors’ orders, no questions asked. Being informed gives them some control over their disease—and that feeling of empowerment plays a role in the healing process. No. 1 rule: do not be cowed by your doctor. Ask him or her to explain anything and everything you don’t understand. Prepare questions in advance of appointments (to reduce stress and the odds of forgetting any)—and bring a notebook to jot down answers and other important info. Below are some questions you should ask:
- What causes this type of cancer?
- What are the risk factors? If it’s genetic, are other family members at risk?
- What lifestyle changes (diet, exercise, rest) do you recommend?
- What are my treatment options?
- Are there activities that should be avoided because they might trigger or
- What happens if new symptoms crop up or existing ones worsen?
- What medical tests or procedures are necessary? How often?
- What stage is my cancer? What does that mean?
- What is my overall prognosis or chance of recovery?
- What are the average survival and cure rates?
- Could my disease go into remission?
- What is the recommended treatment?
- How often will I have to undergo treatment—and for how long?
- What are the potential side effects?
- What are the benefits versus the risks of each treatment option?
- Are there alternative therapies? What are they?
- What are the expected results of treatment?
- Is the treatment painful? If so, is there a way to make it more bearable?
- How long is the recovery? Will it require a hospital stay?
- When can I resume my normal activity (if it’s been curtailed)?
- Has my cancer spread? If so, how does this change treatment decisions?
- Am I eligible for any clinical trials?
- What happens if my disease progresses while I’m in a clinical trial?
- Who foots the bills if I participate in a clinical trial?
- Where can I find emotional, psychological and spiritual support?
- Whom should I call with questions or concerns after office hours?
- May I contact you or a nurse if I have questions or more symptoms? (If the
answer is “no,” find another doctor.)