Survival Strategies

The articles below are to provide inspiration for your own positive survival strategies.

Vitamin D: Current News About an Old Vitamin for Cancer Survivors
Survivorship and your Primary Care Provider
Bone Health: Steps to a healthy skeleton
Cancer Prevention
Coping with Sexual Changes After Cancer
Insurance Issues
How important is exercise for cancer survivors?
Employee Rights of Cancer Survivors

Vitamin D: Current News About an Old Vitamin for Cancer Survivors

by Sarah Washburn, M.S., R.D., Nutrition Department, Seattle Cancer Care Alliance

Did you know that a vitamin D deficiency or insufficiency might be associated with risk of cancer progression or recurrence? Other potential consequences of vitamin D deficiency include decreased bone density or osteoporosis, muscle weakness, bone tenderness or pain, autoimmune diseases, osteoarthritis, diabetes and cardiovascular disease. Here is some helpful information regarding vitamin D:

How is my vitamin D level measured?

The major marker to determine your vitamin D level in your blood is 25-hydroxyvitamin D (25-OH vitamin D). This is a simple blood test that costs about $60, although the price can vary.

What is an optimal 25-OH vitamin D level?

A 25-OH vitamin D level of 30 to 80 nanograms per milliliter (ng/mL) is considered sufficient or optimal, depending on what study you read. Refer to the Grassroots Health web site (see reference below) to view a chart displaying optimal vitamin D levels and associated health conditions. A level of 20 to 29.9 ng/mL is considered insufficient as it is associated with metabolic changes that can be early signs of a vitamin D deficiency. Finally, a 25-OH vitamin D level < 20 ng/mL is considered a vitamin D deficiency.

What are my vitamin D requirements?

The current National Institute of Health (NIH) recommendations are 200 International Units (IU) for adults between the ages of 19 and 50 years, 400 IU per day for adults between the ages of 51 and 70 years and 600 IU for adults over 70 years old. However, the Office of Dietary Supplements at the NIH has assigned a group of experts to review the current literature and it is anticipated that these recommendations will change. Most vitamin D experts estimate that the requirements will increase to 1,000 to 2,000 IU per day for most adults.

How do I get vitamin D?

Vitamin D is known as the sunshine vitamin because our skin produces an abundant amount of vitamin D via ultraviolet light. Reasonable sun exposure is the most inexpensive and natural way to meet your vitamin D requirements. However, current studies indicate that 50% to 60% of the US population is vitamin D insufficient or deficient due to limited sun exposure, constant use of sunscreen, aging, obesity (vitamin D gets trapped in fat tissue) and living more than 40 degrees North of the equator (Seattle latitude is 48 degrees North). Experts recommend that we take 15 to 30 minutes most days to expose our arms and legs to the sun before applying sunscreen. Individuals with darker skin (due to greater melanin content) will require longer sun exposure to produce the same amount of vitamin D as individuals with lighter skin. Make sure to apply sunscreen after a brief exposure to the sun without sunscreen.

Since adequate sun exposure is hard to come by for about 6 months out of the year in the Seattle area, we need to rely on eating foods that contain vitamin D and/or take a vitamin D supplement to maintain our vitamin D levels. Unfortunately, very few foods naturally contain vitamin D, although there are some foods that are fortified with vitamin D (see the list below). Don't rely on cod liver oil as a routine vitamin D source due to its excessive vitamin A content. According to the last US population study from the Centers for Disease Control, the average intake of vitamin D from food alone was less than 240 IU per day. Therefore, a vitamin D supplement is often recommended.

Food Serving Size Approximate Vitamin D per serving (IU)

Many cold cereals ~ 1 cup	40
Milk (with various fat contents) 1 cup	100
Yogurt (cow's milk) 1 cup	80 - 100
Soy milk, vanilla 1 cup	120
Egg 1 large	26
Soy nuts 1 ounce	100
Mushrooms, common white 1/2 cup	53
Mushrooms, shitake, dried 4 mushrooms	249
Mackerel, cooked 3.5 ounces	345
Halibut, cooked 3 ounces	510
Salmon, cooked 3.5 ounces	360
Shrimp, cooked 3 ounces	129
Tuna fish, canned in oil 3 ounces	201
Cod liver oil, t teaspoon	453

Vitamin D supplements come in 2 forms:

1. Ergocalciferol (D2) which is made from plants and fungus
2. Cholecalciferol (D3), which is make from fish oil or lanolin from sheep sweat glands

D3 has 3 times the potency of D2, but most recent studies have not shown that D3 is superior to D2 in preventing fractures. Over-the-counter D2 and D3 supplements are generally available in 400 to 10,000 IU tablets, capsules or drops. And, multivitamins often contain 400 IU of vitamin D.

It is best to have your 25-OH vitamin D level checked once or twice a year to determine your supplementation requirements.

There are some concerns regarding vitamin D supplementation for individuals with medical conditions that cause a high calcium level in the blood and for individuals on certain medications, so check with your health care professional before taking more than 1,000 to 2,000 IU of vitamin D per day. Prescription vitamin D (usually 50,000 IU capsules taken once a week for 6 to 12 weeks) may be required to stabilize your blood level if you have a vitamin D deficiency.

Resources:

http://ods.od.nih.gov/factsheets/vitamind.asp
www.vitamindcouncil.org
http://www.grassrootshealth.org/_download/disease_incidence_prev_25ng_p_ml_bline072608.pdf

Survivorship and your Primary Care Provider

BY PATRICIA READ-WILLIAMS, MD, CLINICAL ASSISTANT PROFESSOR, UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE NEIGHBORHOOD CLINIC, ISSAQUAH CLINIC

Surprisingly, your primary care provider (PCP) may not know everything about your cancer.

There are now 12 million cancer survivors past their fifth year of survivorship. For many of these survivors, PCPs provide ongoing medical care. While the chance of recurrence varies by type of cancer, knowing what to monitor is crucial for early detection and treatment of a recurrence.

You can help your PCP make sure that you get the best care possible by providing a tool from the Survivorship Program clinic at the Seattle Cancer Care Alliance. That tool is the Survivorship Care Plan.

Advances in cancer treatment are being discovered almost daily, making it hard for PCPs to keep up with the latest in detection and treatment options. This is where the Survivorship Care Plan comes in.

The Survivorship Care Plan is the bridge between oncology and primary care. Here's how it works: prior to your survivorship clinic appointment, you will be asked to complete an extensive survey. That survey, along with your oncology records, is used as the basis for a careful examination. After the exam, a Survivorship Care Plan is put together specifically for you.

The plan includes your type and grade of tumor as well as details of the treatments you received, including chemotherapy and radiation. It lists the long-term effects from those treatments and effects of your cancer that will need to be monitored.

Unfortunately, the effects of the cancer can be subtle and pervasive. The Survivorship Care Plan may detail other services such as dietetics, psychology, lymphedema treatment, family counseling, pain management and others. Your input and ideas in the development of the plan are crucial.

Once the Survivorship Care Plan has been developed it is sent to your PCP and a copy is given to you. Once you receive the plan, you and your PCP should go over it in detail and discuss the treatment options, as well as the things that will need to be monitored.

By using the Survivorship Care Plan, your and your PCP will have the best information to give you the individualized and necessary follow-up that you need. And the best information can make all the difference.

For more information about the Survivorship Program clinic, or to arrange an appointment for yourself, a friend or family member, call 1-866-543-4272, email us at survivor@fhcrc.org or visit our Web site at www.fhcrc.org/survivorship.

Bone Health: Steps to a healthy skeleton

by Sue Ott, MD, Associate Professor, Division of Metabolism, University of Washington School of Medicine

Osteoporosis is a condition in which the bones become less dense and more likely to fracture. Fractures from osteoporosis can result in significant pain and disability. People who have had cancer treatment may be at increased risk for osteoporosis and bone fracture for several reasons. Many of these reasons are unavoidable - for example, the medications used to treat the cancer and any loss of estrogen or testosterone can harm bones but are necessary to fight the cancer. Your doctor can monitor your bones if you are on these treatments, and sometimes other medicines to protect the skeleton can be provided.

Other risk factors for osteoporosis and bone fracture include inactivity, poor nutrition and unhealthy habits (smoking cigarettes or drinking more than 2 alcoholic beverages a day). The most important step a cancer survivor can take to improve the skeleton is to literally take steps! Whether by walking, dancing, or climbing stairs, these steps send messages to the bone cells to improve strength. We call these activities "weight-bearing," but this does not mean you have to go to a gym and lift weights. Instead, try to spend more time walking instead of driving, standing instead of sitting, climbing stairs instead of taking elevators.

Appropriate nutrition is another strategy that can reduce one's risk for osteoporosis or lessen the effects of the disease. The most important aspect of nutrition for healthy bones is the total number of calories consumed. Weight loss causes bone loss, even in overweight people. Of course, we do not advise everybody to aim for obesity (although that would help the bones) but many men and women are actually underweight, and it would be healthy to gain weight by eating more calories.

Calcium and vitamin D are other important considerations for healthy bones. Calcium is a mineral found in many foods and used by the body to help strengthen bones and teeth. The recommended total daily amount of calcium is 1200 mg, which can include calcium from foods as well as supplements. Vitamin D is a fat-soluble vitamin that is important because it helps maintain blood levels of calcium and is necessary for bone and tooth structure. Most cancer survivors in Seattle should be taking 800 to 1000 units of vitamin D per day. Also, it is important to note that this vitamin is formed in the skin on exposure to sunlight, so unless you are on vacation to a sunny place you will want to pay attention to how much vitamin D you are getting through your diet. Excess calcium and vitamin D should be avoided; getting too much does not help and might cause side effects like kidney stones or calcium deposits.

We encourage all cancer survivors to take these steps for a healthy skeleton.

Cancer Prevention

by Marian Johnson, Clinical Coordinator with the Prevention Clinics at Seattle Cancer Care Alliance

Prevention — there's a lot you can do! Studies show that Americans say cancer is their number one health concern, yet they believe it is impossible to prevent. They believe cancer is beyond their control.

It's especially important to explore this misunderstanding for cancers survivors as they are at increased risk for recurrence of their original cancer as well as the development of second primary cancers. The heightened risk is the result of cancer therapy combined with factors such as family history.

Nutrition Advisor Karen Collins from the American Institute for Cancer Research (AICR) characterizes these misconceptions as distressing. "Popular frustration about cancer is on the rise. An 'everything causes cancer' mindset is taking hold, which causes Americans to throw up their hands and overlook the steps that can lower their risk." According to a 2007 AICR study, most Americans don't realize that they can lower their cancer risk by eating healthy foods, getting more exercise, and managing their weight.

Only a third of adults in the United States realize that a diet high in red meat increases one's risk for cancer (most specifically, colon cancer). About the same number of people know that alcohol is linked with cancers of the colon, breast, esophagus, mouth, larynx, and pharynx. Fewer than half of Americans realize that there is strong evidence that being overweight or obese increases risk factors for eight different cancers, including those of the colon, rectum and breast.

Most people believe that cancer is out of their control and that pesticides, food additives, and hormones in beef are the primary causes. Research says, however, that the links between these factors and cancer is low and that there is a lot people can do to minimize their risk.

A second AICR report, entitled "Food, Nutrition, Physical Activity, and the Prevention of Cancer: a Global Perspective," is the most comprehensive scientific analysis of cancer prevention and causation ever undertaken, authored by an international expert panel that reviewed 7,000 research studies and classified the accumulated evidence for specific diet-cancer links. The report is online at www.dietandcancerreport.org/.

The AICR also has compiled specific resources and recommendations for cancer survivors at www.aicr.org/site/PageServer?pagename=cs_home.

Coping with sexual changes after cancer

by Dr. Sylvie Aubin, Ph.D., clinical psychologist at Seattle Cancer Care Alliance

Cancer survivorship is associated with adaptation to changes in multiple areas of your quality of life. To the majority of cancer survivors and their partners, couple and sexual relationships are important aspects of their quality of life and are thus significantly bothered by any negative changes, especially if irreversible. To some, these changes may even trigger or contribute to emotional distress such as depression or anxiety. Fortunately, there are many ways or interventions that are available to help you redefine and achieve satisfying couple, intimate and sexual relationships.

Regardless of your diagnosis or treatment, you may expect some changes in your sexual response, frequency and quality of sexual activities as well as overall couple intimacy. In addition to the changes in your sexual response, a number of ongoing treatment side effects may also negatively affect your couple and sexual life. These may include fatigue, low energy level, mood disturbances and physical changes altering your body/self-image. Issues of weight gain, asymmetry/growth of breasts, hot flashes, decreased urinary control and loss of muscle mass not only challenge your perception of self as an attractive and desirable partner but also your ability to experience sexual desire and pleasure.

A number of effective interventions are available to address sexual as well as relationship changes after cancer. Interventions may be tried individually or as a couple. However, for a more satisfying outcome, it is best to involve your partner. The majority of couple and sexual strategies are part of a learning process with a series of trial and error consisting of mutual adjustments accomplished mainly through communication.

Regarding sexual function changes of the erectile, vaginal and orgasm response, strategies may include PDE-5 inhibitors (Viagra ™, Levitra ™, Cialis ™), injections, vacuum devices or penile implants for erectile dysfunction and lubricators (short/long acting), vaginal dilators or hormonal gel/creams for vaginal dryness/atrophy. Problems in the orgasm response may be alleviated by the use of vibrators, pelvic muscle exercises (Kegels) and for premature ejaculation, the intake of an SSRI type of anti-depressant medication (Paxil ™, Prozac ™). Used in combination with the above, other strategies found particularly helpful by partners to increase sexual desire and arousal include the practice of sexual fantasy before and during sexual activities as well as the use of erotic literature (visual/written), sexual toys (vibrators) emphasizing sexual play and experimentation.

However, enhancing couple and sexual intimacy starts with setting aside or planning time together, an exercise often experienced by couples as a date night. Ideally, it may consist in a weekly 3-4hr block of time where partners are engaged in a relaxed, mutually enjoyable activity that may or not include sexual activities. Paramount to re-establishing couple and sexual intimacy is partners' willingness to re-connect on a non-sexual, intimate level and to expand their definition of sex to include non-performance focused sexual activities. For example, mutual sensual caressing or erotic massage alleviates the pressure of performance and allows for the learning of new, alternate sources of sexual pleasure.

Other key ingredients to greater couple closeness may include partners' commitment to share sexual advances, engage in mutual disclosure and active listening of concerns, fears, especially about the changes in their sexual preferences and needs.

In conclusion, a number of treatment options are now available to address changes that may have affected you personally as well as your couple, sexual relationships. It is thus important to become educated about these interventions either by talking to your care team or by consulting available resources.

Insurance issues

by Bobbi Christensen-Meins, Community Program manager from Cancer Lifeline

Probably the second most paralyzing thought after you have been given a cancer diagnosis is "How am I going to pay for all of this?" Following are some questions and answers about insurance and cancer, as well as some helpful resources.

Q: My insurance company denied my claim for part of my treatment. What should I do?
A: One of the most important points for cancer patients concerning paying for treatment is never to accept the word "no." You will have to spend time preparing and filing appeals, but you may be able change a "no" to a "yes" and get the procedure covered. Check your plan benefits. If you think a procedure should be covered but your insurance company denied it, appeal in writing and ask them to reconsider. Include with your appeal a letter from your doctor explaining why the procedure was necessary.

Q: Can my new employer's group health plan deny me or impose a waiting period if I have been treated for cancer in the past?
A: If you have had continuous health insurance for at least 63 days before switching to the new plan, your new insurance cannot deny you or impose a waiting period for any pre-existing conditions, such as cancer. If you have had a gap in coverage, your new insurer can make you wait before it will cover care for pre-existing conditions.

The following organizations can provide you with more information:

SHIBA (Statewide Health Insurance Benefits Advisors)
www.insurance.wa.gov/shiba/index.shtml
(800) 562-6900

For information about and assistance with insurance.

Senior Services of King County/Seattle
www.seniorservices.org/
(206) 448-5720

Not just for seniors! Cancer patients may qualify assistance with a variety of issues.

Cancer Lifeline
www.cancerlifeline.org
(800) 255-5505
A 24-hour resource that provides information, emotional support and referral to other cancer services.

How important is exercise for cancer survivors?

by Lexi Harlow, Physical Therapy, Seattle Cancer Care Alliance

Very important! The American Cancer Society recommends a physically active lifestyle, along with an appropriate weight and healthful diet, to prevent recurrence, second primary cancers, and other chronic diseases.1 Studies have shown that exercise improves cardiovascular fitness, muscle strength, body composition, fatigue, anxiety, depression, self-esteem, happiness, and quality of life in cancer survivors.2 Often, survivors tend to decrease their physical activity levels after being diagnosed with cancer and most continue lower levels of activity through treatment and beyond increasing their overall risk for a second cancer, obesity, diabetes, and/or heart disease.1 Most, if not all, cancer survivors would benefit from a consultation by a physical therapist to help develop a comprehensive exercise program. Physical therapists can make recommendations on the type, frequency, duration, and intensity of exercise. This exercise program should be individualized to your age, diagnosis, treatment, previous activity level, and other medical conditions. Physical therapists can evaluate specific needs in the following areas: strength, flexibility, cardiovascular re-training, scar tissue work after mastectomy/lumpectomy, fatigue, balance, incontinence and neuropathy disorder treatment and to teach lymphedema prevention and/or treatment education.

How can we help you start a safe exercise program?

The Seattle Cancer Care Alliance has physical therapists on staff with expertise in recommending specific exercise programs to cancer survivors with a wide variety of diagnoses and stages of treatment. If you are interested in meeting with a physical therapist at the SCCA, please discuss this further with your doctor, who can make a referral to our department. Survivors who are seen in the Survivorship Program's MOST Clinic can receive a comprehensive evaluation, which will include a discussions of the benefits of exercise and any possible risks. We can also refer you to one of our physical therapists for a consultation. We look forward to helping you meet your physical fitness goals and enhancing your quality of life as a cancer survivor.

For more information on the Fred Hutchinson Cancer Research Center Survivorship Program, or to arrange an appointment for yourself, a friend or family member, call 1-866-543-4272, e-mail us at survivor@fhcrc.org. We hope to hear from you soon.

References
1Doyle C, Kushi LH, Byers T, et al. Nutrition and Physical Activity During and After Cancer Treatment: An American Cancer Society Guide for Informed Choices. CA Cancer J Clin 2006; 56; 323-353. 2Courneya KS. Exercise in cancer survivors: an overview of research. Med Sci Sports Exerc 2003; 35: 1846-1852.

Employee Rights of Cancer Survivors

by Dana Hess, Civil Rights Investigator, Washington State Human Rights Commission

One in three persons will be diagnosed with cancer in his or her lifetime. More than 10 million people in the United States are living with cancer. Additionally, more than 1.3 million persons in the U.S. will be diagnosed with cancer this year. Sixty-five percent (65%) of adults diagnosed with cancer today will be alive five years from now. And the large majority of these persons are employed when diagnosed, undergoing treatment, and after treatment ends.

As employees, a person with cancer (or who had cancer) is, in most cases, considered "disabled" under federal and Washington law and is protected by the American with Disabilities Act (ADA) and the Washington Law Against Discrimination (WLAD). An employer must accommodate an employee's condition when the impairment is "known or shown through an interactive process to exist in fact," and the impairment has a substantially limiting effect on one of the following:

the individual's ability to perform his or her job;
the individual's ability to apply or be considered for a job; or
the individual's access to equal benefits, privileges, or terms or conditions of employment; or
the employee puts the employer on notice of the impairment and medical documentation establishes a "reasonable likelihood that engaging in job functions without an accommodation would aggravate the impairment to the extent that it would create a substantially limiting effect."

The duty to provide reasonable accommodation is a fundamental statutory requirement because of the nature of discrimination faced by individuals with disabilities. Although many individuals with disabilities can apply for and perform jobs without any reasonable accommodations, there are workplace barriers that keep others from performing jobs which they could do with some form of accommodation. These barriers may be physical obstacles or they may be procedures or rules (such as rules concerning when work is performed or when breaks are taken). Reasonable accommodation removes workplace barriers for individuals with disabilities.

For more information see the newly released Breast Cancer Legal Resources Guide at: http://www.wsba.org.