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Active Surveillance - Transitioning to Treatment:
A Candid Conversation
Greetings to you from India, where I have been traveling with my wife for my 50th wedding anniversary. Firstly, we welcome Govinda Ramakrishna, from Kochi, India, to our Board of Directors. You may read about his considerable experience and patient story on our website.
While this is not an official ASPI trip for me, we know that AS is relatively unknown here – in a country with a population of close to 1.5 billion. The Board felt it necessary, concurrent with Govinda’s addition, to do what we could to further our work and mission. Our research indicates that there is an orientation to intervention there, and we have the opportunity to save many men from unnecessary intervention. I learned from sources that doctors in India do not even like to tell men they have prostate cancer as they know it will cause fear and anxiety. They don’t have similar guidelines as we do in the US for guiding men with low to intermediate-risk PCa. And they have no awareness of the current scientific debate in the PCa medical community in the US of whether or not to label Gleason 6 as cancer.
After my return, we plan a program that we strongly encourage you to attend.
Our ASPI Board members would love to hang out with you all on February 25 at noon EST with a presentation from three of us: Thrainn Torvaldsson, Joe Gallo, and Govinda Ramakrishna, who, at different points during their Active Surveillance management protocols, needed to choose intervention and transition to treatment.
Each of us has gone through and continues the prostate cancer journey with a different story. Every one of you has your narrative. The latest estimate in the United States is that approximately 50% of men on AS need to transition for various reasons. Isn’t that the way with prostate cancer; it is a long, winding, and unpredictable road - a divergent experience for all of us.
Many years ago, when many of us chose Active Surveillance, fear of a possible future finding of more aggressive cancer necessitating treatment with potential side effects gave us pause. The word on the street – and scientific studies – suggested high percentages of erectile dysfunction and incontinence once one chose intervention. Men are reluctant to speak of these issues. You can read our own stories online, and we thought it would be compelling and informative to hear from those who have progressed. Our Board Members who have progressed have had challenges but have found ways to cope with and lessen their fears. When we join together for this hour or so, let us speak freely about these issues and other aspects of the transition to treatment.
Save the date! We welcome you to join us on February 25 to hear several stories and participate in our regularly scheduled Q and A following. Our mission is to give you information to empower you to make informed choices during your shared decision-making process with your doctors. This program is a first – and we believe it is vital to present and share it with you.
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Dr. Arvin K. George
Joins The Johns Hopkins Brady Urological Institute
February 4, 2023 - Mohamad Allah, Director of the Department of Urology at Johns Hopkins Medicine, announced on Twitter that Dr. Arvin K. George is joining his team as the Director of Prostate Cancer. Dr. George comes to JH from the Michigan Urological Surgery Improvement Collaborative (MUSIC) - a consortium of 46 urology practices in the state of Michigan, where he served as Director of Prostate Cancer Programs. It should be noted that Michigan has the highest percentage of newly-diagnosed patients with low to favorable-risk PCa adopting the Active Surveillance management protocol - than any other state in the US. Dr. George has also taught the PrecisionPoint Transperineal Access System (PPTAS) biopsy procedure to urologists worldwide.
Johns Hopkins is one of many centers of excellence in the country which offers this procedure to patients who choose it over the TRUS biopsy should they need to include it in their AS protocol.
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February 1, 2023 - The American Journal of Managed Care (AJMC) passed on to us another item of interest regarding a new report from European Urology Oncology detailing "active surveillance best practices and research priorities as determined by an international panel of experts....the work being commissioned by Movember, a global charity focused on prostate cancer, testicular cancer, and mental health initiatives for men." Among those participating in the published findings were ASPI co-founders Mark Lichty (current Board chair), and Howard Wolinsky - in addition to ASPI Board member Joe Gallo, who will be one of three presenters on our panel discussion on February 25 (details above) -"AS: Transitioning to Treatment." Click on the link above for the full report from European Urology Oncology. We're sure to hear more from the participants in the days to come on this significant development which could have an enormous global impact on Active Surveillance in the years to come. As you continue and visit past research on AS, check out one of our many Zoom meeting videos of the ASPI-ANCAN webinar "Your Voice in the Future of Active Surveillance," which was held on April 22, 2022. Click on this link to view the impactful webinar of which Movember was a co-sponsor. And stay tuned for more late-breaking items in succeeding newsletters!
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WE NEED VOLUNTEERS!
ASPI is growing and along with that are our staffing needs. There is a lot of fast changing information floating around and having some more eyes and hands to help us keep providing the best meeting topics, website, and newsletters will help a great deal.
Men tell us that they have received important guidance from ASPI. We are an all volunteer organization and rely on volunteers for our mission.
If you have some time to devote we'd love to hear to hear from you.
Drop us a line at contactus@aspatients.org and tell us what your skill set is! |
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and a Last Word from our audience...
"Each of you individually continue to merit applause."
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ASPI interprets data and shares it with men with BPH, with rising PSA, newly diagnosed with prostate cancer (PCa), and on Active Surveillance (AS). We are growing a network of Patients, Spouses, Partners, and Sons that communicate with each other to improve our quality of life without fear or stress. We firmly believe that we can empower PCa patients on their cancer journey.
It is a huge responsibility and workload that we tackle every day.
Patients talking to patients will become a very strong voice when it comes to our health care. We are on this journey together and intend to be healthy along the way. You are not alone.
Please consider a tax-deductible donation to help our mission. ASPI is a 501(c)(3) approved not-for-profit education and research organization that advances improved outcomes for prostate cancer patients.
E.I.N 82-5386351.
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We at A.S.P.I would like to share information from time to time that might be helpful on your journey with Prostate Cancer.
Whether articles or personal experiences of our members, it is not a substitute for professional medical advice.
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