Prostate Cancer Support Association of New Mexico Bethany asked us to tell you how we can support you and your patients. In this presentation we will introduce PCSANM as an organization, why we exist, who is in the organization, what we do and how we do it. We believe we can help support you and your patients by supplying information so the patient becomes knowledgeable about his options and becomes a partner in his treatment. Our free services and information is as close as an in-person visit, a phone call or an email. Affiliated with Us TOO S

Mission Statement The Prostate Cancer Support Association of New Mexico exists to provide New Mexico men and their families with the most current information about prostate cancer detection and treatment, and provide emotional support following diagnosis, during treatment, and beyond. In this presentation we will talk about who we are, why we exist, the statistics of prostate cancer occurrence, and what tools we have to accomplish our mission. We recognize that each person is an individual with specific existing knowledge, needs and concerns. S

Who is PCSANM? All volunteer organization of prostate cancer survivors Current board of 8 dedicated volunteers who want to help men and families deal with the trauma of a prostate cancer diagnosis 32 identified mentors (buddy list) 750+ on mailing list Add about 40 men per year S

PANIC!! “I’m going to die!” That’s the first thing every patient thinks when he hears the word “CANCER”. And then he hears almost nothing more. Men, in general, make very poor patients and don’t either ask appropriate questions or follow instructions. The PCSA tries to keep things in perspective for the men and families we serve. Our Mission Statement which follows pretty much says what our objectives are S

Why does PCSANM exist? Many men have little knowledge of prostate cancer and may make poor decisions about their care. PCSANM exists to dispel that ignorance. S

PROSTATE CANCER MYTHS Prostate Cancer is an “Old Man’s” Disease Prostate Cancer is easy to cure Prostate Cancer is always fatal But first let’s dispel some of the myths. 1)Although prostate cancer does affect older men more frequently it is not an “old man’s disease”. It doesn’t usually show up much before 40 years old most men should start getting screened when they are 45 unless there is a history in the family or if you are in a higher risk category like African American men who should start at 40. 2)There are many treatments but few actual cures. Prostate cancer cures are often gauged in number of years before recurrence. 3)Prostate cancer is not usually nearly as aggressive as say breast cancer or some other cancers. Most men who are diagnosed late in life will actually die from other causes even if not treated. Early detection and treatment does have a very good prognosis and most men will still die from other causes before the prostate cancer would have time to become a problem or even metastasize at all. L

US INCIDENCE OF PROSTATE CANCER 2015 (ACS estimates) Prostate cancer, most frequent male cancer after skin cancer; 220,800 new cases; 27,540 deaths Life-time risk---14% Life-time risk of PCa death---3% SURVIVAL RATES---National Data,1990-2004 5-yr after diagnosis, localized------100% 5-yr after diagnosis, metastasized---32% L

NM INCIDENCE OF PROSTATE CANCER 2015 (ACS estimates) 1,290 new cases, 210 deaths from PCa 10 YR SURVIVAL, N.M. MEN---1973-2002 Caucasian-----------------82% Hispanic-------------------85% Afro-American-----------80% Native American--------57% (late diagnosis) L

What PCSANM Provides 1-on-1 support Maintain an office M-Th 10AM to 2PM Host bi-monthly Saturday sharing/education sessions Sharing time Topics presented by professionals Put on an annual all-day conference Quarterly newsletter Lending library Outreach Health Fairs Presentations We will look into each of these activities briefly, then go into one-on-one support in depth S

Office A quick view into our facilities https://youtu.be/NHYBdorsEnU S Open 4 days a week and when the office is closed we forward the phone to an on-call member so we are actually maintaining a 24-7 help line. S

We offer this free pamphlet to introduce our organization to you and your patients. It is free for the ordering at pchelp@pcsanm .org We would like to introduce this free document to you at the start of our presentation and urge you to order a free supply from us. This document summarizes much of what the rest of this presentation covers in detail. . S

Tri-fold inside Our Tri-fold is a very quick read and anyone should be able to understand it. It covers prostate cancer incidence, how PCSANM members share their experiences, that PCSANM provides information about prostate cancer, and urges men to have the PSA test. S

Tri-fold back The back of the Tri-fold contains contact and other information about us. S

Bi-Monthly Meetings Start with a sharing session where men and often their wives can express their concerns and hear from others that may have gone through similar experiences. Presentation by a professional on topics ranging from the basics of prostate cancer to the latest diagnostics and cutting edge treatments. We also have presentations on physical therapy, diet, how to get your affairs in order, quality of life issues, dealing with the side effects and any other topic that may have a bearing on how we deal with our cancer. We make sure that no one tells another what they should do but only share their personal experiences. L

Annual Conference All day conference – focusing on a related theme and featuring professional medical presentations. This year’s free conference will be held on November 4, 2017 at Sandia Prep. in Albuquerque. This conference is themed “What’s Next in Prostate Cancer Diagnosis and Treatment”. If interested, the program will be posted on our website shortly. L

Newsletter Features articles we’ve gathered, news about the organization and events that are scheduled L

Library books, pamphlets, and magazines

DVDs S

Typical Health Fair presence Outreach – attend as many health fairs as we can all over the state and pass out literature. We especially encourage screening at these events Presentations – such as what we are doing today and we hope to do more for civic groups, and especially to high risk populations. If your community would like to have a presentation give us a call. S

1 on 1 Support Trained facilitators share with the newly diagnosed about their many options for treatment and how they may arrive at the treatment choice with their doctor. When we conduct one-on–one support we use our packet of information for the newly diagnosed. When face-to-face is not possible we can conduct support by phone. During the one-on- one session we provide the patient and family with information about the prostate, what PSA and Gleason scores mean, provide them with a list of treatment modalities and generally we listen to their concerns and help them formulate questions that they need to get answered. L

PCSANM’s packet for the newly diagnosed. This set of documents is a tool we use to counsel newly diagnosed men and their families. Our facilitator trained survivors review each side of the packet with the newly diagnosed in person (at our office or other mutually agreeable place), or by telephone (after mailing the packet to the individual). Because this is our most important counseling tool, after our facilitator trained survivors, we will walk you through this important document. The right side of the open packet is more or less for “reference” material while the left side is the “working” side. We will look at the right side first and then go to the left or working side. Besides general information, including copies of our newsletters we encourage the newly diagnosed to review on their own two key pieces of information: the Beginners Guide and the Staging Prostate Cancer DVD by Dr. Mark Scholz L

Newly diagnosed packet http://www.pcsanm.org/?page_id=14 The Beginners guide, enclosed in the right side of the Newly Diagnosed Packet, is 6 pages of essential information that anyone with an interest in prostate cancer should review. It contains basic information about the disease, its diagnosis, and treatments available for organ confined and metastasized prostate cancer. It is designed to be an overview, a starting point for research and a potential starting point for discussions with the patient’s doctor. L

Newly diagnosed packet This DVD is on staging of Prostate Cancer by Mark Scholz, one of the leading Oncologists treating only prostate cancer. The DVD explains the different criteria that can be applied to select the optimal treatment for the patient.The patient is urged to spend about one hour reviewing this DVD before consulting with his doctor on deciding upon treatment. It covers the criteria that should apply to selecting active surveillance surgery, radiation, systemic treatments, or combinations. https://www.youtube.com/watch?v=Tf_MU5Y4GS8 L

Newly diagnosed packet This picture is one half of the contents of the left side of the Newly diagnosed packet. This is where we start with a welcome sheet (New Membership Handout) describing PCSA services and ask them to fill out a contact information sheet so we can send newsletters, emails and other info about our activities. . We then begin a detailed review of the patient’s status and hope to give him the tools to understand his prostate cancer diagnosis. He needs to know his PSA, Digital Rectal Exam (DRE) results, and, if biopsied, his Gleason score. We will cover the “Why” shortly, but in the meantime we’ll cover “What” these are. . L

PSA PCSANM disagreed with the US Preventative Service Task Force previous recommendation to stop requesting PSA tests We agree that PSA is not a definitive diagnosis for prostate cancer and is often misunderstood We also agree that overtreatment has been a problem We believe that education about what PSA indicates is a better approach and we applaud the USPSTF for reversing their stand The first of the “Whats” is the PSA reading. 99% of the men who come to us with a prostate cancer concern, will have the results of this simple blood test performed by their PCP, or urologist. This is the test that was under controversy after the USPSTF in 2012 said they didn’t recommend using this test (it’s the only one currently available). They have reconsidered their negative recommendation and are now Ok-ing this test, with caveats. We could talk about PSA for a long time but that will be for another day, other than in our opinion this test should be part of every man’s physical starting no later than age 50, preferably earlier (NCCN guidelines). The second item that we discuss with the patient is the results of his digital rectal exam. This is the “finger” test that many men don’t like because of the sense that they are being violated when the medical professional sticks their finger up the man’s rectum and feels the back of the prostate. L

Newly diagnosed packet The results of the DRE are used to put the man’s cancer situation into the TNM staging system. The medical professional can feel whether or not the prostate has any palpable “bumps” and where those “bumps” are. The chart above lidts where most men we counsel fall into the chart categories. Basically their cancers fall in the prostate and immediate area around the prostate. The next slide shows the remainder of the TNM categories. Now we are ready to look at the third element of what the patient needs to know so he can be an informed patient and can interact with his physician. The third leg is the Gleason score. This is a pathologic finding (see next). L

Newly diagnosed packet Gleason Score For the Gleason Score the Pathologist looks at samples under microscope and assesses the degree of irregularity of the cells in each sample. The pathologist assigns a numerical grade to the predominant kind of cell irregularity in the sample and another numerical grade to the next predominant kind of cells in the sample. The pathologist then reports the two grades for each sample. Reported combination of grades might be like 2+3, or 3+4, or 4+5. The aggressiveness of the cancers found are generally considered not too aggressive when the sum is less than 6, various combinations that sum up to 7 are intermediate, while those 8 and over are considered aggressive. Now with the PSA, DRE results, and Gleason scope in hand, the doctor and patient can make an assessment of the stage of the cancer. Staging is an important phase of prostate cancer treatment and is addressed in detail in the DVD by Dr. Scholz. Suffice it to say for this presentation, the patient and doctor need to assess is it an aggressive cancer, is it confined to the prostate, has it escaped to surrounding tissue, or has it metastasized? All these considerations will determine what type of treatment or none, is appropriate. The next slide shows an early staging tool developed by Johns Hopkins: they compiled the PSA, TNM score and Gleason score for 5000+ men before surgery and compared the same criteria after surgery. Staging is a process whereby the doctors put all the diagnostic data together to determine treatment options. This is a critical point in the patients PCa journey – the decisions made at this point will have irreversible consequences for the patient. Some are good, some may be bad. L

Newly diagnosed packet Because the pathologist report is critical to the selection of treatments, it is often helpful to have the sample read by another pathologist that specializes in prostate pathology. We supply this list of some pathologists we are aware of nationwide. Now we are ready to discuss what the patient probably wanted to know about when he came in the door. L

Newly diagnosed packet We will sit down with the patient and cover the types of treatments and potential side effects. We are cautious to not tell him what to choose but to tell him of the options available. ACTIVE SURVEILLANCE---monitor PSA with regular checks SURGERY---remove prostate gland RADIATION---external beam, seed implants OTHER LOCAL THERAPIES – HIFU, Laser, Cryo HORMONE THERAPY---block testosterone production CHEMOTHERAPY---typically used after failures IMMUNOTHERAPY & NEWER DRUGS CLINICAL TRIALS L

Newly diagnosed packet Our members are very willing to share their experiences with the various types of treatments with others. The “buddy list” formalizes their willingness. All medically accepted forms of treatment are represented. In addition the packet also contains resource lists and reading lists L

What We Offer Professionals Time – professionals are busy and often can’t spend the hours required to fully educate a patient. We have the time. An educated patient – We help them ask the right questions Reduced anxiety – by talking to survivors patients relax to make better decisions and follow instructions S

What We Offer Professionals Support during treatment – If men must travel to Albuquerque for treatment we are here to assist them. Follow up – We help patients understand how to deal with whatever side effects of treatment result. We are another resource to better outcomes! S

Prostate Cancer Support Association of New Mexico 2533 Virginia St NE Suite C Albuquerque, NM 87110 505-254-7784 Email pccancer@pcsanm.org Web www.pcsanm.org Affiliated with Us TOO