Patient survey re active surveillance

AnCan, UsTOO, and Active Surveillance Patients International (ASPI) are working together to conduct a survey of the experiences of men who are on active surveillance (AS), have ever considered AS, or were at one time on AS. Spouses/partners of such men are also able to participate. … READ MORE …

A revolutionary advance in patient-centric prostate cancer advocacy/support

For those who have not already heard about it, two of the very largest patient-centric prostate cancer advocacy organizations have agreed to merge into one.

… READ MORE …

Modulating personal bias in provision of prostate cancer “support” services

As Howard Wolinsky has been learning over the past few years, not all prostate cancer support groups are “equal” — in the sense that individual support group leaders may be seriously biased by their own personal experiences (which may have occurred many years ago). … READ MORE …

Do men on AS need their own support groups?

Howard Wolinsky is a long-time prostate cancer patient who has been on active surveillance (AS) since his diagnosis in 2010, when one of his doctors described him as a “poster child” for active surveillance. … READ MORE …

Participation in a patient support group increases prostate cancer patient knowledge

A newly published study from a group of German researchers examined the degree to which participation in patient support group activities increased prostate cancer patients’ health literacy and, specifically, their prostate cancer‐specific and non‐cancer‐specific knowledge about health care. … READ MORE …

For patients on or considering active surveillance

Prostate Cancer International wishes to announce the development and official opening of its online Active Surveillance Virtual Support Group. … READ MORE …

Cancer “journey”? … What cancer “journey?”

One of the ways that some prostate cancer patients help themselves (and others) is through the ways that they engage with other patients and families and the health care systems in the areas where they live. … READ MORE …

Being an advocate — thoughts on what it means

I am an advocate by surprise.  I believe I join a group of thousands, maybe millions who would say the same.

Help with finding out about clinical trials for prostate cancer treatment

Apparently the National Cancer Institute (NCI) has just re-funded the Fred Hutchinson Cancer Research Center in Seattle to the tune of $24 million to continue to operate what we see as an important, patient-centric program here in the USA that we (and therefore probably many others) were utterly unaware of. … READ MORE …

Impact of OSGs on patient decision-making and treatment for localized prostate cancer

Since Prostate Cancer International runs an online support group (OSG) for patients, we were obviously very interested to see a newly published article by a German research group on the effects of OSGs on patients’ decision-making processes. … READ MORE …

Living with very advanced forms of prostate cancer

A new article in the journal Supportive Care in Cancer makes the point that informational needs and resources for men dealing with metastatic, castration-resistant prostate cancer continue to be relatively poor — a fact that we would not disagree with. … READ MORE …

What does “value” mean for prostate cancer patients?

Many readers who weren’t able to join us on yesterday’s CureTalk panel discussion may want to listen to what was a wide-ranging discussion about things that are really valuable to prostate cancers patients at diagnosis and along their prostate cancer journey. … READ MORE …

Survey about use of online support networks for prostate cancer patients

Researchers at George Mason University (GMU) in Fairfax, Virginia, USA are conducting a study to learn more about men’s use and perceptions of online prostate cancer support networks as well as men’s experiences with prostate cancer. We encourage readers to participate in this survey. … READ MORE …

Gee … on-line support systems for prostate cancer patients actually work!

In the management of patients being treated for prostate cancer, “Providing support using online methods is effective; the length of time this intervention should be provided to patients will require further research.” … READ MORE …

ACS stops providing support for Man-to-Man network

We heard rumors more than a week ago that the American Cancer Society (ACS) was closing down its Man-to-Man support group network, and now we can confirm that (effectively) this is the case. … READ MORE …