July 2000
Issue 1
Welcome to the Saint Louis University Hospital (SLU Hospital) cancer patient education newsletter. This newsletter has been developed to give you, the cancer patient, and your family information on specific topics. This newsletter will be updated every three months with a new topic focus. This first edition of the SLU Hospital cancer newsletter will deal with cancer survivorship.

If you are a cancer survivor who received treatment at SLU Hospital, you should have received a card from our oncology staff congratulating you on a special birthday. Whether it has been years, months, or days since you were diagnosed with cancer, you are considered a survivor. Wouldn't you agree? Just getting the diagnosis of cancer puts you into a survival mode. One of my colleagues who has cancer corrected me on this terminology and stated that she preferred the term “thriver.” She and others felt that the term “survivor” sounds like you are holding on by the skin of your teeth.

This year it is estimated that 10 million people are considered survivors and thrivers of cancer. Each year on the first Sunday of June, you as survivors are given your special day. A birthday of sorts. It is an important day for the world to acknowledge that people who get cancer are living! The world applauds your accomplishments, your struggles and your ability to overcome.

Survivorship has become an important topic and has been addressed in many magazines, on TV and in the news. The issues surrounding survivorship are real and must be brought out in the open for you to discuss. Many people are isolated with their diagnosis and feel it is difficult to discuss with others not experiencing cancer. We would like to identify a few of the issues you as survivors may encounter along your journey and give you resources to utilize. By becoming more aware of these issues, you may feel that you are not the only cancer survivor with these issues and concerns.

Insurability Discrimination in employment
Chronic fatigue
Body image concerns
Secondary cancers
Other issues

Insurability:
After you have been diagnosed with cancer, you may have some insurance questions. Frequently asked questions include: Have I reached my maximum dollar amount to be covered? Will I be able to get insurance again after my diagnosis if the insurance holder changes jobs?

 - There is a brochure out about insurance issues called
   “Cancer: Your job, insurance, and the Law” and can be
   obtained from the American Cancer Society.
 - The National Coalition for Cancer Survivorship is a
   resource for all survivorship issues.
 - The National Insurance Consumer Organization offers
   general information only about insurance issues
   (703) 549-8050.
 - Information on health insurance for high-risk individuals:
   The Gateway Cancer Resource Guide offers insurance information
   for Missouri and Illinois residents. To order copies, contact:
   Cancer Family Care/9385 Olive Blvd./St. Louis, MO 63132 or phone
   (314)993-1240.
 - For an understanding of health insurance and how to receive
   reimbursement for claims, contact the National Coalition for Cancer
   Survivorship at (888)650-9127.

Discrimination in employment:
Many people worry about being able to get a job after they have had a diagnosis of cancer. Although you may experience some discrimination, you are protected from discrimination by the Americans with Disabilities Act passed to protect anyone from job discrimination related to an illness or disability. If you would like more information about your legal protection from discrimination obtain a copy of:

 - Americans With Disabilities Act: Legal protection for cancer
   patients against employment discrimination. From the American
   Cancer Society. 1-800-ACS-2345.
 - Other resources: National Rehabilitation Information Center
   1-800-34-NARIC.
 
Chronic Fatigue:
Many people who have had cancer report feeling fatigued or tired. There has been much attention paid to this issue over the last few years. There are even ads on television on the topic of talking to your doctor about fatigue. If you are anemic, you may be given a medicine designed to improve this. Many people continue to feel tired long after their treatments are complete. Some studies have shown that moderate exercise may improve this fatigue. Your energy may return months after treatment or it may never be what it was like pretreatment. This really varies with each individual. Let your doctor or nurse know how you are feeling.

Body image concerns:
Some cancers require surgery that cause changes in body image and how you feel about yourself. Sometimes there is swelling in the arms or legs because lymph nodes have been moved or taken out during surgery. Radiation to the brain may cause long-term changes in hair. If you are experiencing any of these concerns, there are resources to help you through these issues. Talk to your doctor or nurse.

 - Look Good Feel Better program through the American Cancer
   Society (1-800-395-LOOK)
 - Reach to Recovery is a program for breast cancer patients to
   meet another person who has had breast cancer. The American
   Cancer society is the sponsor of this program.
 - There are many places to obtain prosthesis, wigs, and clothing
   to address issues of body image for those who have had
   mastectomy, a limb removed for bone cancer, or any other surgery.
   Resources may be available if you cannot afford these types of
   prostheses.

Secondary Cancers:
Secondary cancers are cancers you can get from the treatment for your first cancer. If you were treated with some forms of chemotherapy or radiation therapy you may be at risk for developing another cancer several years after that treatment. It is important to follow-up with your cancer doctor as directed because he/she will monitor you for cancer in other parts of your body.

This is different from a second type of cancer. A second cancer is a cancer that is different from your first cancer. A woman may be successfully treated for her breast cancer and 10 years later develop a second cancer in her colon that has nothing to do with the breast cancer.

Survivors can increase their chances of having a second cancer found early by having regular cancer screenings. Survivors should feel encouraged when their doctor recommends screening for a second cancer; the doctor wants to help them to live for many years to come.

- Wear sunscreen when out in the sun to prevent skin cancer, do not
   smoke or quit smoking to prevent lung cancer, eat a diet high in
   fiber to prevent colon cancer. Continue the recommended
   screenings to help identify cancer at an early phase.

Other issues:
Sexuality and fertility are often concerns of cancer survivors. Sexuality is the feeling of intimacy and intercourse. Many people who have cancer or who undergo treatment for cancer have decreased sexual drive. Women may experience vaginal dryness and some men experience impotence. If you are having any difficulties with sexuality, consult your doctor or nurse for treatments or referrals for the specific issue.

Fertility is the ability for a person to have children. Some chemotherapy drugs and radiation to the reproductive organs can make a person unable to have children (men and women). Doctors may be able to predict those at highest risk for being unable to have children, but this is not absolute. Many people have had children after treatment when they were told they could not. Discuss fertility with your cancer doctor or nurse; especially address when is an appropriate time to have children after treatment concludes. If you have been told that there is a high chance that you will be unable to have children after treatment, you may want to consider sperm banking or ovarian harvesting. These techniques can be done, but you must investigate the agency doing the processing to make sure they are credible.

Early menopause is also common for women who have had chemotherapy. Signs and symptoms of early menopause include: no periods (menstruation) for several months, hot flashes and sweats, mood swings, irritability, anxiety, bladder infections or difficulty holding urine. There is treatment available for these symptoms, consult your doctor or nurse. One resource that has information on menopause is Understanding Menopause and Beyond; this can be obtained at SLU Hospital.

There may be other long-term effects of your cancer and its treatment. You need to be assured that it is OK for you to discuss any issues with your cancer doctor or nurse. Living with cancer and its effects should not be devastating but should be an experience to learn from.

Many report living “day by day” and have even reported gaining benefit from their cancer diagnosis. They say they learn to look at life differently – more clearly – focusing on the “important” things in life such as their family, friends, walks in the park, their pets, the sunrise, or something as simple as their morning cup of coffee. We would like to hear from you. How do you deal with the diagnosis? The struggles? And the strides? If you haven’t already sent your reply to our survivor questionnaire, please send it in so we can compile the responses into a testimonial of all thoughts. No Names will be used. It will be added to this newsletter.

Congratulations to all of the survivors of cancer who are thriving in life!! We stand up and acknowledge you today and every day, because you are the reason we care for cancer patients.