Active Surveillance Patients International (ASPI) Active Surveillance Patients International (ASPI) is a non-profit based in St. Louis, Missouri that was created by men with prostate cancer (PCa) for men with prostate cancer. The founders all took a proactive approach to active surveillance. They still witnessed much overtreatment and much confusion about monitoring. We were often contacted by men seeking guidance and felt that this organization might be a vehicle to better help. 15 yrs ago people doing AS were almost unheard of, now nearly 50 % do AS, and we know more can.
Why does ASPI support the concept of the ProActive Patient? “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 Patients and also Proactive Patients. 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 patients do when surveillance is no longer possible because their disease is becoming more aggressive and may be spreading to other organs
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.
Consider this, some 250,000 men a year Worldwide alone are diagnosed with early-stage prostate cancer (Gleason 6/7). They most likely will never experience deadly and painful metastatic disease. But typically, they undergo surgery or radiation therapy because they don’t fully understand all the options that are available to them.
Frankly, our society has cancerphobia. Many of these men think they must undergo surgery or radiation to eradicate their cancers. They don’t. They could live long lives without exposing themselves to the risks of urinary incontinence, erectile disorder, bowel problems and even death.
As it stands, of these 250,000 men, 125,000 will undergo aggressive treatment and 125,000 should be offered to go on AS to monitor their cancer. That is better than a decade ago when 5,000 men a year opted for AS. ASPI knows we can do so much better.
Our concerns which led to ASPI’s creation
- There are plenty of groups devoted to supporting AS. But when men on AS attend these meetings they are often seen as the “lucky ones” and get little attention devoted to their special needs. Some critical topics that must be covered with PCa patients: Are biopsies needed every year or is a 3T mpMRI all that is needed to monitor the condition? Do contrast agents in 3T mpMRI pose threats to brain barrier health? How do they manage anxiety over living with prostate cancer when traditional medicine has taught to cut or burn it out?
- We strive for a great quality of life while living with our cancer.
- Too many newly diagnosed patients are not told that they may be able to live for years, even decades, with cancer without the need for potentially life-altering and even deadly surgery or radiation. Instead, they are rushed into urology OR’s and radiation suites without a second opinion that could give them access to active surveillance.
- Research has shown that most men with early-stage (Gleason 6) and intermediate-stage (Gleason 7) prostate cancer can live well with their cancers. But there has been little research on the potential benefit of lifestyle factors, such as diet and exercise, on men with these cancers.
We see ASPI as an international, patient-driven movement that addresses these concerns with our kick-off conference. We believe you can help.
In spring 2017, Thrainn Thorvaldsson reached out to Howard Wolinsky, a Chicago-based journalist and long-time active surveillance (AS) patient, who writes “A Patient’s Journey” blog at MedPageToday.com. Thrainn wanted to explore Howard’s experiences on AS. Howard suggested that they hold an international meeting to have the experts share their latest research with patients. It would be the first such meeting of its kind. The idea remained dormant until fall 2017 at a dinner during the last day of the PCRI (Prostate Cancer Research Institute) conference in LA. Two attendees, Gene Slattery and Mark Lichty, both active surveillance followers for years, suggested organizing an international conference about AS.
Lightning struck twice. Later that evening, Alexandra Scholz, executive director from PCRI joined them at the table at the Marriott Hotel and the idea of organizing an ASPI (Active Surveillance Patient International) conference was born. Soon after George Gillespie and Bill Manning joined the group.
Founders Thrainn Thorvaldsson, Howard Wolinsky, Mark Litchy & Gene Slattery began to work on forming a new non-profit corporation in Missouri. In April of 2018 Active Surveillance Patients International (ASPI) officially began. The website, aspiconference.org, was one of the first things the newly formed group completed.
Many more dedicated people have joined the planning, program and advisory teams. With minimal coverage other than in Howard’s “A Patient’s Journey” blog in MedPage Today.com, more than 200 people have signed up on the website requesting information about ASPI. As the preparation evolves, ASPI is working with other cancer organizations on both sides of the Atlantic. PCRI is our lead partner.
The organizing team includes AS patients who have been following this approach for as long as 18 years. The seed for this idea grew because these men observed the sometimes unpleasant consequences of overtreatment and chosen an untraveled route, one questioned by many. They later found their choice of AS was later embraced by the medical profession. They saw a need to help other men to have access to leading-edge tools to avoid overtreatment. Too they saw a need to build a bridge between nations and their approaches.
Active Surveillance Patients International (ASPI) will support and empower men with a rising PSA, newly diagnosed with prostate cancer (PCa), or on Active Surveillance (AS), and their partner to be proactive on their PCa journey.
Our vision is to develop proactive patients by providing the latest data and fostering the understanding necessary to pursue the best outcomes with the least intervention.
- 501 (c) (3) approved