Pathways and Signposts

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UsTOO Presentation for the newly diagnosed

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Pathways and Signposts

  1. 1. - PROSTATE CANCER -Understanding Your Diagnosis Someone to talk to… who understands.
  2. 2. Us TOO has TWO terrific resources tohelp you understand your diagnosis. • Pathways for New Prostate Cancer Patients 2. Signposts along the Pathway of Prostate Cancer Use these two brochures together to navigate your diagnosis AND YOUR JOURNEY. Someone to talk to… who understands.
  3. 3. Brochure #1 Pathways for New Prostate Cancer Patients You Don’t Need to Walk Alone Begin Your Journey with Education and Support as Solid as the Ground You Walk On The path you choose is unique… like you. Someone to talk to… who understands.
  4. 4. Brochure #2 Signposts Along the Pathway of Prostate Cancer Understanding Diagnostic Tests and Procedures to Monitor Prostate CancerSignposts along the pathway are designed to identify where you areand point out the most efficient and effective route toward your Someone to talk to…desired destination, a healthy you. who understands.
  5. 5. Brochure #1 - Pathways Receiving the news that you have prostate cancer is overwhelming. Information, opinions, stories, and emotions can cause confusion. Many Information for people find credible, unbiased Peace of Mind education and support valuable. The Pathways brochure provides you with information to enable you to assume an You’re at the Trailhead: integral, self-directed role in making decisions during your Define Which Path You’ll journey with prostate cancer. Take by Understanding Your Choices
  6. 6. Brochure #1 - Pathways Us TOO Has More Than Us TOO is Here to 300 Support Accompany You on Group Your Journey. Chapters Worldwide Us TOO International Prostate Cancer Education & Support Network was started as a 501(c) (3) not-for-profit organization in 1990 by prostate cancer survivors to serve prostate cancer patients and their families. Someone to talk to… who understands.
  7. 7. Brochure #1 - Pathways Good News: Physicians are More It’s Better to Skilled than Ever to Travel with a Team Treat Prostate Cancer Take your time to choose the right physician/staff team that you can trust and that makes you feel comfortable and confident. Carefully assess your needs and match them accordingly. You want to be sure they include you as an integral member of the decision-making process.
  8. 8. Brochure #1 - Pathways A UROLOGIST, Specialists You A RADIATION ONCOLOGIST A PHYSICIAN ASSISTANT (PA) May Encounter A SOCIAL WORKER Along The Way. A NUTRITIONIST NURSES A THERAPIST An ANESTHESIOLOGIST A PATHOLOGIST A MEDICAL ONCOLOGIST
  9. 9. Brochure #1 - Pathways Understanding Your Cancer The more educated you are about Getting the Lay your cancer, the more in-control and confident you will feel in making of the Land treatment choices that are unique to you. Monitoring markers such as your PSA level, the core needle biopsy, your Gleason Score, and other tests your physician may suggest will help you to understand your cancer.
  10. 10. Brochure #1 - Pathways Important Information Understanding You Need to Understand: - The Prostate Your Cancer - Normal Prostate Cells - Cancerous Prostate Cells - What Causes Normal Cells to Become Cancerous?
  11. 11. Brochure #1 - Pathways You Need to Know Where Location, Your Cancer is Located location, location… You can gain an understanding of what type of cancer you have and where it is located by talking with your physician, and having a basic knowledge of clinical terminology. Knowing the stage of your cancer, and how fast your cancer is expected to grow, will help you determine which treatment is best suited to your healthcare needs and lifestyle expectations.
  12. 12. Brochure #1 - Pathways PSA (prostate-specific antigen) is a protein made by the prostate. Understanding The PSA test measures the PSA level of PSA in the bloodstream. A small amount of PSA is present in the bloodstream• Establish a baseline. when the prostate is healthy.• Track PSA over time However, when the prostate• Pay attention to begins to make too much velocity and doubling PSA, it can be a sign of time. prostate disease. We are all unique, PSA levels vary from person to person.
  13. 13. Brochure #1 - Pathways • Used to diagnose prostate cancer. • Usually performed by a urologist. • The doctor inserts a needle through the rectum wall into the prostate Understanding gland. • The needle removes a cylinder of Core Needle Biopsies tissue, usually about 1/2-inch long and 1/16-inch across. • Most urologists take 8 – 18 samples. • The tissue sample is sent to a pathologist to see if cancer is For additional present. • If cancer is present, the pathologist information about will assign it a Gleason Score. Needle Biopsies, see the Signposts brochure, page #4. Note FALSE NEGATIVES: Even with many samples, biopsies can sometimes miss a cancer if none of the biopsy needles pass through it. This is known as a “false negative” result. If your doctor still suspects prostate cancer (due to a high PSA level, for example) a repeat biopsy may be needed.
  14. 14. Brochure #1 - Pathways Cancer Stages Help Plan Your Route Knowing the stage of your cancer provides important information for you and your physician as you explore your treatment options. There are treatment options specific for early and advanced stages of cancer. It can be helpful to refer to the two lobes of the prostate to describe the cancer’s location and in planning treatment. Stage I (T1 tumor) Stage II (T2 tumor) Stage III (T3 tumor) Stage IV (T4 tumor)
  15. 15. Brochure #1 - Pathways Gleason Score Provides a Compass for Decision-Making PART #1 – What is a Gleason Score? A Gleason Score describes different types of cells to classify tumors by their microscopic appearance. The score helps to estimate:  how fast the cancer is likely to grow, and  a patient’s life expectancy. The Gleason Score is made up of two numbers which are determined by a pathologist and then added together. The first number indicates the type of cancer cells that are most numerous in the tissue sample. The second number indicates the type of cancer cells that are second most numerous. The total Gleason Score is determined by adding a primary and secondary score pattern for each lesion i.e. 3+4=7.
  16. 16. Brochure #1 - Pathways Gleason Score Provides a Compass for Decision-Making PART #2 – Gleason Scores and What They Mean The lower the score, the better the prognosis. 2 to 4 Cancer is very low on an aggression scale 5 to 6 Cancer is mildly aggressive 7 Cancer is moderately aggressive 8 to 10 Cancer is highly aggressive This score helps to determine the appropriate type of treatment FOR YOU.
  17. 17. Brochure #1 - Pathways Empower Yourself by Understanding Treatment Options  Prostate Cancer is typically a slow growing cancer.  Stay calm and take your time, up to a few months, to explore your options and make a treatment decision.  Oftentimes, a combination of treatments will be recommended to treat your cancer, for example radiation and hormone therapies.  Seek the best treatment for you.  Once you’re given a treatment recommendation from a physician specialist, it is a good idea to get a second or third opinion from the same type of specialist, as well as other specialists.
  18. 18. Brochure #1 - Pathways Treatment Options Study pages #6-7 Discuss the information with your doctor and your loved ones.
  19. 19. Brochure #1 - Pathways Special considerations For Hormone-Resistant, or Androgen-Independent Prostate Cancer Hormone-resistant or androgen-independent prostate cancer that has metastasized (Stage N+ and M+) may require treatments such as: • Systemic Radiation Therapy, used to reduce pain and symptoms, • Estrogen Therapy • P450 Enzyme Inhibitors • Chemotherapy.
  20. 20. Brochure #1 - Pathways Clinical Trials/Emerging Treatments Worldwide, research efforts are underway to discover new types of treatment. There are several types of emerging treatments, including: • Vaccine therapy • Gene therapy • Targeted Medications Ask your physician if there is a clinical trial that may be appropriate for you or visit www.clinicaltrials.gov or www.ustoo.org for more information.
  21. 21. Brochure #1 - Pathways Side Effects Side effects vary with each treatment option. This is an important topic to discuss with your physician to determine which side effects you might experience, how mild or severe they might be, how long they might last and what you can do to either prevent them or lessen their intensity.
  22. 22. Brochure #1 - Pathways A Prostate Cancer Patient’s Journey from Diagnosis Through Recovery During each phase of your journey with prostate cancer, you will find support in different places. Use available resources such as Us TOO and communicate openly with your healthcare provider(s), supportive family, friends, other patients and survivors.
  23. 23. Brochure #1 - Pathways ASK QUESTIONS: Gather Information from Your Guides Plan on meeting with three specialists: * urologist * radiation oncologist * medical oncologist. Although each physician will recommend a course of treatment, the final decision remains with you, the patient—with the help and support from your family. Your Objectives: 1. Determine the status. 2. Evaluate the treatments. 3. Gather accurate information. 4. Select a treatment. .
  24. 24. Brochure #1 - Pathways MANAGING THE ROAD TO RECOVERY Recovery from treatment is different for everyone. Once you have selected your treatment option, talk with survivors who can help you understand what you can expect during your recovery process. Remember to include physician specialists, supportive family members and friends who can provide various levels of support during your treatment and recovery phases. * Set your expectations accordingly * Recovery Requires Preparation * Review Ten Tips to Help you Through Recovery (page #10) with your loved ones BEFORE you begin treatment(s).
  25. 25. Brochure #1 - Pathways SEEK SUPPORT & HAVE HOPE You are now equipped with the information you need to take your first steps toward treating and managing your prostate cancer. You can live with prostate cancer. Seek out other men have been treated with prostate cancer. They can provide a wealth of information and support as you travel on your own treatment path. Chinese Proverb—“To know the road ahead, ask those coming back.”
  26. 26. DO YOU NEED OR WANT MORE INFORMATION ON THE TESTS AND PROCEDUCES TO DIAGNOS AND MONITOR PROSTATE CANCER? IF SO, CONTINUE ON…. Someone to talk to… who understands.
  27. 27. Brochure #2 - Signposts Prostate cancer diagnosis is rarely Understanding the result of one test or one medical procedure. The Diagnostic Process Diagnosis is generally the result of a longer process, including several screening and diagnostic tests and much analysis. This is true whether you are: • receiving your first diagnosis • monitoring your progress after receiving treatment, or perhaps facing recurrent disease. The tests, tools, and screening procedures you experience in the diagnostic process are like signposts on a journey, designed to show you where you are & point the way.Signposts along the pathway are designed to identify where you areand point out the most efficient and effective route toward yourdesired destination, a healthy you.
  28. 28. Brochure #2 - Signposts Doctors use four key tools for an initial prostate cancer diagnosis: Understanding • Blood • Touch The Diagnostic • Tissue • Image. The results of these four types Process of tests provide basic diagnostic information, such as the stage of your cancer and your Gleason Score. THE You and your care team can BASICS use the results of these tests & tools … … to determine the best course of treatment for YOU. .
  29. 29. Brochure #2 - Signposts Beyond the Basics—CLARIFICATION As you review the chart on pages 3–5, you will notice several tests in addition to the basic diagnostic tests. These additional tests can provide clarity on certain aspects of your prostate cancer diagnosis. Many decisions about treatment options become clearer based on the information provided by these test results. NOTE: Be sure to get copies of all your test results. This can be vitally important as you move from one medical professional to another. You may also want to graph your test results for better communication and understanding.
  30. 30. Brochure #2 - Signposts Knowledge is Power Test, Procedures and Tools Study pages 3-5 to learn more about important tools for your journey. Talk with your doctors and your loved ones about your questions and/or concerns.
  31. 31. Brochure #2 - Signposts You Are Your Best Advocate This is the time to be your best advocate. Take the time to learn about the diagnostic process. Understand your diagnosis and what is happening in your body. Reach out for support and ask questions. Us TOO is here for you as you learn. Our goal is to provide support, information, and a safe place for you to share and learn. You are not alone. Someone to talk to… who understands.
  32. 32. You Are Not Alone Us TOO International®Prostate Cancer Education & Support Network 5003 Fairview Avenue Downers Grove, IL 60515-5286 phone 630-795-1002 fax 630-795-1602 www.ustoo.org Prostate Cancer HelpLine: 1-800-80-Us TOO (808-7866) Someone to talk to… who understands.

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