Active Surveillance Patients International (ASPI) is a non-profit based in East Stroudsburg, PA, created by men with prostate cancer (PCa) for men with prostate cancer. The founders all took a proactive approach to Active Surveillance (AS). They witnessed overtreatment and confusion about monitoring. Men from all walks of life contacted us seeking guidance and felt that this organization might be a vehicle to help. Two decades ago, men on AS were almost unheard of; now, over 50% of men with low-grade prostate cancer practice AS, and we know that there are still newly diagnosed men with Gleason 6-7 who might want to consider AS as their “treatment.”
ASPI supports the concept of the proactive patient who is interested in reading materials and watching videos as part of their research, participates in support groups and webinars, attends (if possible) relevant conferences, and, most importantly, establishes decision-sharing relationships with their doctors.
In following Active Surveillance, we and our life partners or friends are deeply involved in our care. We discuss everything with our family doctors and our specialists. We may choose to consult with dietitians and naturopaths to inform ourselves of food regimens and dietary supplements to improve our prostate health and overall health. We may also consult with exercise physiologists and alternative healers.
We engage with science-based professionals in updating our AS protocols. And, finally, we include in the information we disseminate what proactive patients do when AS is no longer possible because, over time, we find through testing that there is evidence of more aggressive PCa.
As of this writing, AS monitoring and testing changes involve PSA, imaging, biopsies, and much more.
Consider that thousands of men a year worldwide are diagnosed with early-stage prostate cancer (Gleason 6/7). They most likely will never experience deadly and painful metastatic disease. But without researching their diagnosis, they choose to undergo surgery or radiation therapy because they don’t fully understand all the available options.
Fear and anxiety play a large part in their decision-making. They could live long lives without exposing themselves to the risks of urinary incontinence, erectile disorder, bowel problems, and even death.
The aggressive treatment may very well be unnecessary. While ASPI does not offer medical advice, we aim to provide the latest science-based research, which, in turn, leads to the Active Surveillance alternative to other treatments.
Active Surveillance may be appropriate for many men with low and intermediate risk PCa. In some instances interventional treatment may be appropriate as well. ASPI recommends a diligent Proactive decision making and monitoring process for men adopting the Active Surveillance approach.
Our concerns which led to ASPI’s creation
- Several other prostate cancer organizations include support groups for AS. We encourage patients to gather as much information as possible in these groups to make informed decisions. We strive at ASPI to cover critical topics related to the AS protocol, including, but not limited to, PSA testing, imaging (i.e., 3TmpMRIS and ultrasounds), contrast agents, and types and frequencies of biopsies if needed.
- We strive for an excellent quality of life while living with our low-grade cancer.
- Although this is somewhat changing, some professionals do not tell newly diagnosed and low-risk patients 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. Patients sometimes overlook opportunities to seek second, even third opinions on imaging and pathology. These opinions could very well lead them to a decision to treat their low-grade cancer with 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. Additional research on the potential benefits of lifestyle factors, such as diet and exercise, is part of ASPI’s information gathering. ASPI is an international, patient-driven movement.
ASPI was conceived at a Prostate Cancer Research Institute (PCRI) annual conference. Thrainn Thorvaldsson, Mark Lichty, Howard Wolinsky, and Gene Slattery, all on AS, saw a need to guide men through the sometimes confusing AS journey. They had heard many horror stories of overtreatment and realized that there was no other organization that solely dedicated its efforts to AS.
ASPI is grateful to PCRI and Mark Scholz for their compassionate leadership in opening the doors to AS. The founders saw 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.
ASPI realized that there were opportunities to improve the monitoring process and minimize risks such as sepsis from biopsies. Early on, the organization raised awareness of the potential risks from the use of contrasts such as gadolinium. As an international organization, ASPI continues to build bridges between nations and their approaches.
Active Surveillance Patients International (ASPI) will empower men diagnosed with low and intermediate risk prostate cancer, including Gleason 6-7, by providing the latest information to allow for informed decisions with your physician, regarding approaches to active surveillance. 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.
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