We diagnose cancer either when it has symptoms or when we are looking for something else.

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2 Dedication: Thank you to our elders and those who shared their time, wisdom, and stories. Thomas Burke Raymond Craig Christine DeCourtney Stacy Kelley Greg Marino Karen Morgan Judith Muller Matthew Olnes Tammie Pickett Laura Revels Barbara Stillwater James Tiesinga Funding for this project provided by We diagnose cancer either when it has symptoms or when we are looking for something else. Some cancers have clear symptoms and we can often diagnose them quickly. Some cancers typically have no symptoms until the disease is very advanced. - Thomas J. Burke, MD ANMC Gynecologic Oncology This publication was produced by the Alaska Native Tribal Health Consortium Cancer Program Designed by Dan Miller Graphics December, 2015

3 What is cancer? Cancer starts in our cells. Every day, your body s cells grow, divide and die off in an orderly manner. But sometimes cells can grow out of control. When this happens, these extra cells can form cancer. Cancer is not one disease. There are many types of cancer. Cancer affects each person in a different way. It is important to find out the exact kind of cancer, where it is in the body, its size, and whether it is just in one organ or if it has spread to other organs.

4 How is cancer diagnosed? When someone goes to the doctor with a health problem, the doctor will ask questions and do an exam. This will help the doctor decide what kind of tests should be done. There is no single test to diagnose cancer. Many tests are done to get the information needed to make a treatment plan. These can include lab tests, x-rays, scans, and biopsies. Some cancers are diagnosed by a screening test such as a colonoscopy or pap smear. These tests help find cancers early. In most cases, a biopsy is needed to diagnose cancer. A doctor removes a sample of tissue and sends it to a lab. This tissue is looked at under a microscope to confirm a diagnosis. Pathologists look at patterns in patient tissue cells and to distinguish normal patterns from abnormal patterns. Cancer cells grow in distinct ways that are usually easy to recognize under the microscope. Pathologists also can send tissue away for expert analysis. It may take several days or even weeks for the pathologist to arrive at the correct diagnosis. The pathologist looks at all of the test results and makes a diagnosis, which may or may not be cancer and reports it to the patient s doctor. The doctor discusses the diagnosis with the patient and coordinates all treatment that is needed. -James Tiesinga, MD, Pathologist, Director ANMC Pathology/Laboratory Stages of cancer The stage of cancer describes how far the cancer has spread from where it first started. It can describe the size of the tumor, whether the cancer is found in lymph nodes or has spread to different parts of the body. Stage 1 means the cancer has been diagnosed early. Stage 4 means the cancer has spread to another part of the body (metastasized). Knowing the stage of cancer helps doctors develop the best treatment plan. STAGE 1 Early form STAGE 2 Localized STAGE 3 Extensive local & regional spread STAGE 4 Distant metastasis

5 Waiting is so hard! Sometimes more tests are needed in order to make sure your doctor has all the information to make your treatment plan. Many people will worry that the cancer will spread during this time. However, most cancers grow very slowly. Waiting a few days or even weeks to make sure a diagnosis is right does not usually make a difference in cancer. Treatment usually begins within one month after cancer is diagnosed. In some cases, you may have to wait longer. Sometimes, for personal reasons, like taking care of family, fishing or berry picking, cancer treatment can be started later. The doctor will tell you if it is safe to delay treatment. Cancer treatment is designed for each person and each kind of cancer. It is important to begin treatment when all the test results are back. Doctors want to make sure they know the best way to treat each cancer for each person. It is important to get as much information as possible before diagnosing someone with cancer and finding the best way to treat it. Cancer, even cancers of an organ like the lung or breast, is not one thing it is a family of different kinds of cancer cells that share the same body tissue. Cancer cells do not spread evenly through an organ. They often scatter like birdshot and we don t know where they will show up next. So it takes time to find the right mix of drugs that can treat the different cells. There is no one treatment strong enough that can target and kill all the cancer cells but save non-cancer cells. The good news is that cancer detecting machines and new therapies are invented all the time. Cancer patients are living longer than they did even a few years ago. -Greg G. Marino, DO Former Director of Oncology at ANMC

6 Cancer treatment Cancer treatment can include chemotherapy, radiation therapy, surgery, hormonal therapy, and immunotherapy. Sometimes people also choose other types of complementary therapies, like traditional healing, along with their standard treatment. They may also seek treatments, like massage therapy, acupuncture and meditation to help with the side effects of cancer treatment. At the ANMC Hematology/Oncology Clinic we have access to national and international information about the latest treatments for cancer. We review all new recommendations for cancer treatment when we design a special treatment plan for each of our patients. -Matthew Olnes, MD, PhD Director of Oncology at ANMC Treatment recommendations The National Comprehensive Cancer Network has developed treatment guidelines for most cancers. Your doctor will look at these guidelines to find the recommended treatment for your cancer. There are no firm rules about treating each type of cancer. The guidelines are based on the results of how patients like you did after they received certain treatments. Treatment plan There are many kinds of cancer and different cancers respond to different treatments in each person. Some people with cancer will have only one kind of treatment. But most people have many types of treatments, such as surgery with chemotherapy and/or radiation therapy.

7 Side effects Cancer treatments can have side effects like nausea, vomiting, and diarrhea. It is very important to let your doctor and nurses know about any side effects you are having. There are treatments for side effects that can make you more comfortable. Cancer remission When a patient with cancer completes a cancer treatment plan and there are no more cancer cells that are found, the patient is in remission, meaning the cancer is not showing anywhere in the body. This can also be referred to as No Evidence of Disease (NED). Recommended treatment for cancer changes often as new research findings result in new therapies. In the future we will better understand the make up of each patient s genes and cells and be able to develop more effective targeted cancer treatments. It is hard to treat cancer because everyone s cancer is unique to them and will respond to treatment differently. Researchers are finding ways for cancer treatments to be designed for each person. -Matthew Olnes, MD, PhD Director of Oncology at ANMC Cancer reoccurrence If the cancer comes back, the treatment process will need to start over again with a new cancer treatment plan.

8 More Information: Alaska Cancer Care Alliance The Alaska Cancer Care Alliance provides navigation of resources through staff, American Cancer Society volunteers, literature and educational workshops throughout Alaska. Phone: (907) Web site: American Cancer Society (ACS) The ACS mission is to end cancer as a major health problem through prevention, saving lives, and relieving suffering. ACS works towards these goals through research, education, advocacy and service. The organization s National Cancer information Center answers questions 24 hrs a day, 7 days a week. Web site: Phone: National Cancer Institute (NCI) Provides comprehensive, research based information on cancer prevention screening, diagnosis, treatment, genetic, and supportive care. Web site: NCI s Cancer Information Service (CIS) Answers questions about cancer, clinical trials, and cancer related services and helps users find information on the NCI Web site. Phone: CANCER ( ) Chat online: Susan G. Komen Komen s Breast Care Helpline is available Monday through Friday, 9 am - 10 pm (EST). Web site: ww5.komen.org Phone: GO KOMEN ( ) Alaska Native Tribal Health Consortium (ANTHC) (907) Alaska Native Medical Center (ANMC) (907) ANMC Oncology /Hematology Clinic (907) Questions: What is the stage of the disease? Has the cancer spread? What is my treatment plan? How long will my treatment last? What side effects could come with my treatment? What side effects need to be reported right away? Will there be any long term side effects? How do I prepare for my tests or treatment? When will treatment start? When will it end? How often will I have treatments? Will treatment affect my normal activities? How will we know if the treatment is working? Would gene testing be helpful to me or my family?

9 Notes Notes

10 Notes I was 20 years late for my first screening colonoscopy and they found two polyps. The ANMC doctor told me that I had to have surgery to remove the cancerous part of my colon. I didn t worry while I waited, because I knew I couldn t change anything and I trusted the doctor. Even though they took 2ft from my colon, I recovered quickly. - Raymond Craig, Glennallen, Alaska I was diagnosed 10 years ago with leukemia at the age of 34 years while pregnant with my son. I remember how hard it was to feel like I had no control over my life. I had to develop patience through the long process of treatment at ANMC and to get to my full life with my family today...including my healthy 10 year old son! -Tammie Pickett, MD, Anchorage, Alaska I ve been diagnosed with cancer two times. First time I wanted the doctor to cut it out and get rid of it. I didn t even think about it. Second time I was diagnosed, I had a more aggressive type of breast cancer. I couldn t believe I had cancer. I felt like my whole life was thrown in chaos over those three little words you have cancer. I went from disbelief, to sadness, to being scared, to being determined. After a year of cancer treatments including chemo and radiation, I m happy to say, I m cancer free for 7 years! - Laura Revels, 2x cancer survivor, Anchorage, Alaska (originally from Sitka)

11 Funding for this project provided by 4000 Ambassador Drive, Anchorage, AK