Prostate Cancer International wishes to announce the development and official opening of its online Active Surveillance Virtual Support Group. This group meets by webinar / conference call once a month, usually at about 4:00 pm Eastern time (1:00 pm Pacific) on the second Wednesday of each month.
Registration is required to join. Please e-mail Jan Manarite at jan.pcainternational@gmail.com or JManarite@hotmail.com. Just enter “I want to join ASVSG” in the header and your name (or nickname) in the body of the text and hit “Send”. It would help us if you gave us some idea of your age, your diagnosis, and where you live, but that is not essential.
Active surveillance (AS) is an established and recommended first-line management option for prostate cancer patients who are defined as having low-risk or very low-risk and who can consider deferring treatment because of the slow-growing nature of their cancer. It may also be appropriate for some carefully selected men with favorable intermediate-risk prostate cancer.
Through the use of AS, some men may be able to defer the need for treatment for years — or even for ever.
Men already on or thinking about starting on active surveillance have a whole range of concerns that are very different to those of men who clearly need — or have already had — some form of early first-line treatment (not to mention the men with more advanced forms of prostate cancer:
- Is just monitoring low-risk prostate cancer really a good idea?
- How does active surveillance actually work?
- Will I have to have another biopsy every single year? (No. You almost certainly won’t!)
- How do I know if and when I need to have some form of treatment?
- If I defer treatment by using AS, can I still be treated successfully later? (Yes, nearly always as far as we can tell.)
The intent of this new AS Virtual Support Group is as follows:
- To give prostate cancer patients already on AS a place to ask questions and receive thoughtful responses based on current guidelines and research.
- To give men on AS a place to connect with each other.
- To give men who are new to AS (or trying to decide whether AS is right for them) a place to connect with other patients who have navigated AS for years (mentors).
- To give men who have been on AS for years a place to mentor others, and to share their experiences.
Most webinars will be interactive in nature, guided by questions that you and other patients bring to the meeting or submit beforehand. The webinar setting offers a way to share visuals, graphics, and websites with support group members as we discuss different topics. Each attendee will also receive copies of any slides used in the webinar for their own understanding and personal research. Mike Scott or Jan Manarite will moderate the webinars and discussions.
If you have questions, please feel able to e-mail Jan at JManarite@hotmail.com. To learn more about AS, here are some useful links:
- Active surveillance for prostate cancer: how to do it right (an article by Drs. Garisto and Klotz on the CancerNetwork.com web site)
- Active surveillance: protecting patients from harm (a 45-minute-long slide-lecture presentation by Dr. Klotz on the UroToday web site, which you need to join to watch the lecture, but there is no cost)
- Howard Wolinsky’s continuing journey on active surveillance (a whole series of articles by a Chicago-based journalist who has now been on active surveillance since 2010)
- The 2017 guidelines for the management of prostate cancer — issued jointly by three highly relevant medical associations (and look in particular at recommendations 1, 4, 7, 8, 19, and 28-33)
The AS Virtual Support Group webinars and conference calls are a free service of Prostate Cancer International, and are supported by an educational grant from Genomic Health, which has no input into the content or organization of the webinars.
Filed under: Diagnosis, Living with Prostate Cancer, Management, Risk | Tagged: active, group, support, surveillance, virtual |
THE "NEW" PROSTATE CANCER INFOLINK 
A printed copy of this article will be an excellent hand-out resource at our Us TOO support chapter for our monthly meetings. We already have three foam board posters on active surveillance that we display at each meeting, and I will attach a handout envelope to one of them with copies of this article.
Thank you for reporting this!
Great service, Jan, and thanks for the references.
I am far past the point of active surveilance but would be interested in participating to gather information to share with others who are in my two prostate cancer support groups. Would it be appropriate for me to listen in?
Dear pfadtag:
I shall forward your message to Jan so you should get a response from her later today.
Hi pfadtag — I sent you a direct email. Let me know if you don’t get it…