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.)
3. Your Odds of Beating Cancer
Success in the battle against cancer is often measured in terms of the “five-year relative survival rate.” That rate is the number of patients who are still alive five years after being diagnosed, relative to the number who would be expected to survive if they had not come down with the disease. Five years might not seem like a lot, but it is, considering that 67 is the median age for diagnosis.
Below is a sampling of five-year relative survival rates for common types of cancer diagnosed between 1996 and 2004. These rates are calculated by the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) program, which collects survival data from state registries covering about 26 percent of the U.S. population.
Survival rates have increased dramatically over the years, thanks to earlier detection and better treatments. The five-year relative survival rate for patients diagnosed with any type of cancer in 1975 was 50 percent; the rate jumped to 67 percent in 2000.
Bear in mind that survival rates vary widely depending on the type of cancer and the patient’s age, gender, general health, lifestyle and ethnicity. You can find more detailed statistics at http://seer.cancer.gov
Five-Year Survival Rates
Melanoma (skin) 91%
Urinary bladder 80%
Non-Hodgkin’s lymphoma 65%
Colon and rectum 64%
Lung and bronchus 15%
4. Getting Support: Tips, Tools and Tenderness
You’ve just been diagnosed with cancer. Now what? First and foremost, do not try to handle this on your own. Allow family and friends to help, and find others in your situation to lean on.
- www.crazysexycancer.com: Carr’s Web site. Have questions? Want to dish? You can visit her online community, www.crazysexylife.com.
- http://berniesiegelmd.com and www.ecap-online.org: These sites of physician Bernie Siegel, author of Love, Medicine & Miracles and Peace, Love & Healing (both from Harper Paperbacks, 1990), offer info and tools based on the science of mind-body-spirit medicine.
- www.cancercare.org: Need a professional cancer assistant? Try the next best thing. This site is designed to help patients navigate their way through cancer—answering questions, finding help or just “listening” when they need to vent.
- http://nccam.nih.gov: The National Center for Complementary and Alternative Medicine of the National Institutes of Health provides information here on alternative and complementary therapies, discoveries and clinical trials.
- http://hippocrateshealthinstitute.com: Site of the Hippocrates Health Institute, a world-renowned healing center in Florida.
- www.mercola.com: An alternative medicine and education site.
- www.heardsupport.org: This site is specifically geared toward patients with hemangioendothelioma, the rare cancer that Carr has.
- www.livestrong.org: Site of seven-time Tour de France winner and cancer survivor Lance Armstrong.
- www.ulmanfund.org: Provides support programs and resources for patients and their families. Also helpful: a downloadable book penned by founders Doug and Diana Ulman.
- www.thechinastudy.com: The China Study, by T. Colin Campbell, probes the relationship between diet and cancer and other diseases.
- www.cancer.gov: This site of the National Cancer Institute is a comprehensive source of state-of-the-art treatments and clinical trials (including a database of open trials).
- www.imtooyoungforthis.org: An invaluable source of support and research for survivors in their 20s and 30s and their families.
- www.cancersurvivorsunite.org: Camps and support programs for young adults with cancer.
- www.youngcancerspouses.org: A site designed to connect couples dealing with the ups and downs of cancer.
- www.cancerconsultants.com: Contains detailed, consumer-friendly information on the latest treatment developments.
- www.americancancersociety.com: This American Cancer Society site provides basic information, alternative therapies, ways to manage the disease, and support programs .
- www.oncolink.com: This University of Pennsylvania site offers key cancer info and pointers.
- www.cancerguide.org: A how-to on researching your disease, searching for clinical trials, and finding out about the latest traditional and alternative therapies.
- www.cancer.net: American Society of Clinical Oncology site provides oncologist-approved information to help patients make informed decisions about their health care.
- www.gildasclub.org: Named for Saturday Night Live comedian Gilda Radner, who died of ovarian cancer, this site provides a support network for patients and their families.
- www.thewellnesscommunity.org: The Wellness Community provides support and education for cancer patients and caretakers—and hooks them up with others going through the same thing. It provides info on local wellness communities and even offersa virtual wellness community in Spanish.
5. Medical Resources
Finding a doctor who specializes in cancer care and choosing a treatment facility are essential steps in any patient’s recovery program. One good place to start is with the 63 cancer centers that the National Cancer Institute recognizes for “scientific excellence and the capability to integrate a diversity of research approaches” (http://cancercenters.cancer.gov/cancer_centers).
You can also check whether the American College of Surgeons’ Commission on Cancer (www.facs.org/cancerprogram) approves of a given program. Some of the things to look for in a cancer center include a low mortality index, a high ratio of nurses to patients and opportunities to participate in clinical trials. For more tips, see www.cancer.gov/cancertopics/factsheet/Therapy/doctor-facility. Here is a selection of some of the most respected cancer treatment centers around the country:
Dana-Farber Cancer Institute
Memorial Sloan-Kettering Cancer Center
New York City
Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
Children’s Hospital of Philadelphia
Duke Comprehensive Cancer Center
University of Texas M. D. Anderson
University of Chicago Medical Center
(facilities also in Arizona and Florida)
University of Washington Medical Center
UCLA Medical Center
6. The 411 on Health Insurance
Worried that your health insurance won’t cover your treatment? Wondering if you’re entitled to disability benefits? These Web sites may help:
7. How to Stay Healthy
Patients undergoing treatment can shore up their physical (and emotional) reserves by eating well, exercising and cutting stress (which impairs the immune system). The American Institute for Cancer Research, which funds studies on the role of food and exercise in cancer prevention and treatment, recommends a diet that’s at least two-thirds vegetables, fruit, whole grains and beans. Below is a roundup of research related to staying healthy:
- A study of 22,000 healthy Greeks showed their “Mediterranean diet,” rich in vegetables, whole grains, olive oil, fruit and fish, reduced their risk of dying from cancer by at least 25 percent. Other studies have found that nutrients in dark, leafy greens may inhibit the growth of tumor cells in breast, skin, lung and stomach cancers and that green tea may thwart cancer development in colon, liver, breast and prostate cells. (A leading theory: flavonoids in tea and carotenoids in leafy greens, which act as antioxidants, may protect against cancer by rooting out free radicals.)
- A pair of 2006 studies showed that regular exercise reduced by up to 61 percent the odds of death in colorectal cancer patients. The findings held even in patients who did not start exercising until after diagnosis.
- A 2005 study showed that 92 percent of nearly 3,000 women with breast cancer who walked or did other exercise three to five hours weekly were still alive 10 years after their diagnosis, compared with 86 percent of those who exercised less than an hour a week.
- A 30-year review of the scientific literature, published in 2004, suggested that cancer patients who feel helpless or who suppress negative emotions may be at greater risk of having their cancer spread than those who play a role in their healing.
8. Looking Ahead: Start a Family?
Does a cancer diagnosis spell the end of your dreams to have a family? In a word—no. Note to readers: check your options before undertaking treatments that may cause infertility. In the event that you cannot become pregnant, there is always surrogacy and adoption. Despite what you’ve heard, it is possible to adopt if you’ve had cancer. The key: pick an agency and country that are open to working with cancer survivors.
For more, check out:
- www.fertilehope.org: This site provides unvarnished facts about fertility risks associated with cancer treatment as well as fertility-preservation and parenthood alternatives before, during and after treatment. It outlines the success rates, costs and time requirements for a variety of fertility procedures and also addresses other possibilities, including egg and sperm donation, surrogacy and adoption.
- www.pregnantwithcancer.org: This Web site links newly pregnant cancer patients with others with a similar cancer who have already been there, done that.