Active Surveillance Conference -PCa
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Active Surveillance Patients International (ASPI) is a group of prostate cancer (PCa) patients and advocates with the goal of helping fellow survivors obtain the best outcomes with the least intervention. Our vision is of the ProActive Patient, who, working with partners/spouses and health professionals, takes care to a new level with greater involvement of patients in making informed decisions.
Our first international conference in St Louis is for men on Active Surveillance (AS) their spouses/partners, sons, and newly diagnosed with PCa. The conference is organized for them by AS survivors. The Active Surveillance Patients International (ASPI) Conference will empower men and their spouses/sons/partners concerned with PCa. ASPI’s goal is to provide the most current information to help them make informed decisions regarding approaches to Active Surveillance [AS] and choosing appropriate care.
You have heard of active surveillance and watchful waiting, terms used for approaches to follow early-stage and intermediate stage PCa rather than rushing in with aggressive, potentially risky and life-changing therapies such as radical surgery, chemotherapy and radiation. Doctors still debate the value of these terms and others, such as monitoring, observation and expectant management, says the American Cancer Society.
Whatever you call it, two-thirds of men diagnosed with early-stage prostate cancer will never need aggressive therapies. They can live with their cancer and will die from another cause.
The problem is that doctors can’t predict precisely who needs definitive treatment and who doesn’t. Hence, the need for patients to be followed with prostate-specific antigen (PSA) tests, digital rectal exams, multi-parameter MRI scans and biopsies.
Why does ASPI support the concept of the ProActive Survivor? “Proactive” means you make things happen instead of waiting for them to happen to you. Active means "doing something.” The prefix pro- means "before."
So, if you are proactive, you are ready before something happens. It’s the opposite of reactive or waiting for things to happen before responding.
We are Active Surveillance and proactive survivors. We and our life partners are deeply involved in our care.
We discuss everything with our family doctors, oncologists and urologists. We consult with dietitians and urologic naturopaths, discussing how the right food and dietary supplements can improve not only our prostate health but our health overall. We consult with exercise physiologists and alternative healers.
We search for answers to control our disease. We also discuss what proactive survivors do when surveillance is no longer possible because their disease is becoming more aggressive and may be spreading to other organs
We urge you and your spouse/partner to join us June 5-7, 2020 in St Louis, MO to share your experiences and hear about ours as proactive survivors. We will present panels with survivors and other health professionals.
We will get to know each other and form new networks as we develop this new concept of ProActive Survivor.
We are preparing for the paradigm shift and sea change in Active Surveillance that is starting to take hold now. Our Active Surveillance Patients International Conference will be on the forefront of this change.
Background (addressing problem or question): Over-treatment has been a disconcerting issue in the prostate cancer field for decades. Prostate cancer is the only cancer that is primarily diagnosed and treated by surgeons (urologists), resulting in bias that has saturated the medical community and its treatment of the disease. Active surveillance is a treatment option that is often neglected, as doctor’s terms and lack of explanation can make patients fearful that the cancer is more aggressive than it actually is. Many men who are perfect candidates for active surveillance choose options like surgery or radiation out of fear. These men are often unaware of the complicated and often permanent side effects that greatly diminish quality of life. Studies have shown that treatment regret is prevalent in men who choose surgery and radiation. Active surveillance is a treatment option that leads to better quality of life and reduces the risk of side effects that come with unnecessary, invasive treatments. But how are men who are candidates for this treatment supposed to choose active surveillance if it is not offered and explained to them?
Proposed Solution: For men to choose active surveillance as a treatment option for prostate cancer, we must raise awareness and educate men of all ages and their loved ones. To this end, ASPI will hold the Active Surveillance Patients International Conference, a patient planned and run meeting, bringing together prostate cancer experts--urologists, dietitians, oncology nurses, sexuality counselors and other health professionals--from around the world who will present on active surveillance, lifestyle changes, diet and exercise, and advancements in screening. By gathering specialists, educating on active surveillance against overtreatment for men who are candidates, and sharing the conference online with people around the world, we will create a movement that truly has a global impact.
Objectives: ASPI aims to educate men and their loved ones on active surveillance as a treatment option for prostate cancer, creating a greater awareness internationally. We aim to create nothing less than a movement of survivors/spouses, partners, and health professionals whose missions it to promote further research on new technology in order for men to properly screen, as well as promote research on lifestyle impact through diet and nutrition on active surveillance. Part of this movement is to address the problems men on active surveillance face that cause them to unnecessarily move on to radical treatment. We want to create a movement that educates families on prostate cancer, preventative lifestyle changes, and the best screening tools, and https://www.facebook.com/aspiconference/ thus create an active surveillance movement against over-treatment of prostate cancer.
Methods: In order to raise awareness for the conference we will create social media ads, e-blasts, and keep a current website. Other organizations and medical professionals who are supporting us will share our e-blasts and updates with their contacts as well. The conference will feature a full schedule over the course of two to three days, with presentations from experts in active surveillance. The conference will feature a Q&A segment after each presentation with the presenter, so attendees can have their questions answered directly. Anyone around the world can submit their questions before the conference via a website form. In an effort to promote research, ASPI will partner with companies who work in imaging technologies, staying current on research and sharing this information and information on early detection through our website. All aspects of active surveillance will be thoroughly explained, as well as over-treatment and side effects of unnecessary treatments, providing a strong, clear education that promotes active surveillance and lifestyle changes.
Outcomes (projected): Through our contacts and those of our supporters, about 1,000 people will be invited to attend the conference. Of this, we expect an audience of 300 to 500 in person at the conference, and we expect thousands who are unable to attend to stream it online to learn the valuable information. We will also publish roughly 40 blogs on active surveillance topics to be shared on our website, along with 30 videos of the conference itself. We expect to publish at least one study on active surveillance, gathered from the survivors who attend the conference. These outcomes ensure that active surveillance education, delivered in a conference that brings experts together, will be shared around the globe on an unimaginable scale. This involves the objectives listed above, creating a solution to the problems we are addressing.
The international working group will be conducting a long-term study on what lifestyle factors can be employed--diet, supplements, exercise, etc.--to slow or prevent progression of prostate cancer.
Briefly Summarize Your Survivor and Stakeholder Engagement Plan: The survivor and stakeholders are all men (with or without prostate cancer), the loved ones of those men, experts in the prostate cancer field (particularly with a focus on active surveillance), and other prostate cancer non-profits. All will be engaged through bi-weekly e-blasts regarding the conference, as well as bi-weekly blog posts featuring research and study-based information on active surveillance. Survivors will also be engaged through the website, where they will be able to submit questions to presenters prior to the conference and during the conference. Patients at the conference may also submit written questions at the conference. After the conference, attendees will be engaged with surveys to gather real life data that can be valuable to the prostate cancer community and active surveillance community.
ASPI Goal’s
To inform PCa survivors by providing the latest data and the understanding necessary to pursue the best outcomes with the least intervention.
To help inform AS survivors Spouses/Partners and their sons with helpful and relieving information so they can have a better quality of life living with an AS survivor. To give their sons proper data to prevent them from getting prostate cancer in the first place.
To provided data on Exercise, Nutrition, Supplements, Protocols, Faith, Positive attitude and discuss with them a quality of life living with cancer.
To provide Testing information to monitor their cancers.
To provide Supplement options wo help fight their cancers.
To provide treatment information options and side effects may affect their quality of life.
To provide information on stress, anxiety concerns or problems and help relieve them.
To discuss sexuality issues and provide options.
To discuss urinations issues and solutions.
To help Prostate Cancer patients become cancer survivors with a good quality of life.
We are not in the medical field and we do not give advice, we just provide good data for the PCA survivors to digest and discuss all their options and become more proactive about their health care. The information we provide will help you communicate better with your health care provider.
Our first international conference in St Louis is for men on Active Surveillance (AS) their spouses/partners, sons, and newly diagnosed with PCa. The conference is organized for them by AS survivors. The Active Surveillance Patients International (ASPI) Conference will empower men and their spouses/sons/partners concerned with PCa. ASPI’s goal is to provide the most current information to help them make informed decisions regarding approaches to Active Surveillance [AS] and choosing appropriate care.
You have heard of active surveillance and watchful waiting, terms used for approaches to follow early-stage and intermediate stage PCa rather than rushing in with aggressive, potentially risky and life-changing therapies such as radical surgery, chemotherapy and radiation. Doctors still debate the value of these terms and others, such as monitoring, observation and expectant management, says the American Cancer Society.
Whatever you call it, two-thirds of men diagnosed with early-stage prostate cancer will never need aggressive therapies. They can live with their cancer and will die from another cause.
The problem is that doctors can’t predict precisely who needs definitive treatment and who doesn’t. Hence, the need for patients to be followed with prostate-specific antigen (PSA) tests, digital rectal exams, multi-parameter MRI scans and biopsies.
Why does ASPI support the concept of the ProActive Survivor? “Proactive” means you make things happen instead of waiting for them to happen to you. Active means "doing something.” The prefix pro- means "before."
So, if you are proactive, you are ready before something happens. It’s the opposite of reactive or waiting for things to happen before responding.
We are Active Surveillance and proactive survivors. We and our life partners are deeply involved in our care.
We discuss everything with our family doctors, oncologists and urologists. We consult with dietitians and urologic naturopaths, discussing how the right food and dietary supplements can improve not only our prostate health but our health overall. We consult with exercise physiologists and alternative healers.
We search for answers to control our disease. We also discuss what proactive survivors do when surveillance is no longer possible because their disease is becoming more aggressive and may be spreading to other organs
We urge you and your spouse/partner to join us June 5-7, 2020 in St Louis, MO to share your experiences and hear about ours as proactive survivors. We will present panels with survivors and other health professionals.
We will get to know each other and form new networks as we develop this new concept of ProActive Survivor.
We are preparing for the paradigm shift and sea change in Active Surveillance that is starting to take hold now. Our Active Surveillance Patients International Conference will be on the forefront of this change.
Background (addressing problem or question): Over-treatment has been a disconcerting issue in the prostate cancer field for decades. Prostate cancer is the only cancer that is primarily diagnosed and treated by surgeons (urologists), resulting in bias that has saturated the medical community and its treatment of the disease. Active surveillance is a treatment option that is often neglected, as doctor’s terms and lack of explanation can make patients fearful that the cancer is more aggressive than it actually is. Many men who are perfect candidates for active surveillance choose options like surgery or radiation out of fear. These men are often unaware of the complicated and often permanent side effects that greatly diminish quality of life. Studies have shown that treatment regret is prevalent in men who choose surgery and radiation. Active surveillance is a treatment option that leads to better quality of life and reduces the risk of side effects that come with unnecessary, invasive treatments. But how are men who are candidates for this treatment supposed to choose active surveillance if it is not offered and explained to them?
Proposed Solution: For men to choose active surveillance as a treatment option for prostate cancer, we must raise awareness and educate men of all ages and their loved ones. To this end, ASPI will hold the Active Surveillance Patients International Conference, a patient planned and run meeting, bringing together prostate cancer experts--urologists, dietitians, oncology nurses, sexuality counselors and other health professionals--from around the world who will present on active surveillance, lifestyle changes, diet and exercise, and advancements in screening. By gathering specialists, educating on active surveillance against overtreatment for men who are candidates, and sharing the conference online with people around the world, we will create a movement that truly has a global impact.
Objectives: ASPI aims to educate men and their loved ones on active surveillance as a treatment option for prostate cancer, creating a greater awareness internationally. We aim to create nothing less than a movement of survivors/spouses, partners, and health professionals whose missions it to promote further research on new technology in order for men to properly screen, as well as promote research on lifestyle impact through diet and nutrition on active surveillance. Part of this movement is to address the problems men on active surveillance face that cause them to unnecessarily move on to radical treatment. We want to create a movement that educates families on prostate cancer, preventative lifestyle changes, and the best screening tools, and https://www.facebook.com/aspiconference/ thus create an active surveillance movement against over-treatment of prostate cancer.
Methods: In order to raise awareness for the conference we will create social media ads, e-blasts, and keep a current website. Other organizations and medical professionals who are supporting us will share our e-blasts and updates with their contacts as well. The conference will feature a full schedule over the course of two to three days, with presentations from experts in active surveillance. The conference will feature a Q&A segment after each presentation with the presenter, so attendees can have their questions answered directly. Anyone around the world can submit their questions before the conference via a website form. In an effort to promote research, ASPI will partner with companies who work in imaging technologies, staying current on research and sharing this information and information on early detection through our website. All aspects of active surveillance will be thoroughly explained, as well as over-treatment and side effects of unnecessary treatments, providing a strong, clear education that promotes active surveillance and lifestyle changes.
Outcomes (projected): Through our contacts and those of our supporters, about 1,000 people will be invited to attend the conference. Of this, we expect an audience of 300 to 500 in person at the conference, and we expect thousands who are unable to attend to stream it online to learn the valuable information. We will also publish roughly 40 blogs on active surveillance topics to be shared on our website, along with 30 videos of the conference itself. We expect to publish at least one study on active surveillance, gathered from the survivors who attend the conference. These outcomes ensure that active surveillance education, delivered in a conference that brings experts together, will be shared around the globe on an unimaginable scale. This involves the objectives listed above, creating a solution to the problems we are addressing.
The international working group will be conducting a long-term study on what lifestyle factors can be employed--diet, supplements, exercise, etc.--to slow or prevent progression of prostate cancer.
Briefly Summarize Your Survivor and Stakeholder Engagement Plan: The survivor and stakeholders are all men (with or without prostate cancer), the loved ones of those men, experts in the prostate cancer field (particularly with a focus on active surveillance), and other prostate cancer non-profits. All will be engaged through bi-weekly e-blasts regarding the conference, as well as bi-weekly blog posts featuring research and study-based information on active surveillance. Survivors will also be engaged through the website, where they will be able to submit questions to presenters prior to the conference and during the conference. Patients at the conference may also submit written questions at the conference. After the conference, attendees will be engaged with surveys to gather real life data that can be valuable to the prostate cancer community and active surveillance community.
ASPI Goal’s
To inform PCa survivors by providing the latest data and the understanding necessary to pursue the best outcomes with the least intervention.
To help inform AS survivors Spouses/Partners and their sons with helpful and relieving information so they can have a better quality of life living with an AS survivor. To give their sons proper data to prevent them from getting prostate cancer in the first place.
To provided data on Exercise, Nutrition, Supplements, Protocols, Faith, Positive attitude and discuss with them a quality of life living with cancer.
To provide Testing information to monitor their cancers.
To provide Supplement options wo help fight their cancers.
To provide treatment information options and side effects may affect their quality of life.
To provide information on stress, anxiety concerns or problems and help relieve them.
To discuss sexuality issues and provide options.
To discuss urinations issues and solutions.
To help Prostate Cancer patients become cancer survivors with a good quality of life.
We are not in the medical field and we do not give advice, we just provide good data for the PCA survivors to digest and discuss all their options and become more proactive about their health care. The information we provide will help you communicate better with your health care provider.
Organizer and beneficiary
Shelly Jones
Organizer
Ballwin, MO
Gene Slattery
Beneficiary
