Transforming Fear into Hope: Prostate Cancer Treatment Discussions on Inspire

By Kathleen Hoffman, PhD MSPH

In October 2009, Us TOO Prostate Cancer partnered with Inspire to support men diagnosed with prostate cancer. Now, the Us TOO International Prostate Cancer Support Community on Inspire has over 23,000 members. Last year, almost 500 new discussions started in the area of treatment options, prompting over 5500 new replies. When patients and caregivers started 148 discussions about being newly diagnosed, they received more than 2500 replies from fellow patients, who supported and educated them.

Patient and caregiver members often introduce themselves with their diagnosis parameters and then discuss their treatments.

“My husband has Gleason _#_ and we just returned from consultation with radiation oncologist and was told he needed to do hormone treatment for __months before__ __other treatment__We have to decide which procedure he is willing to do. But we were hoping not to have to do hormones as it seems that it is hell to go through. Any advice or experience regarding this first line of hormone therapy instead of it being administered during radiation or after radiation? Thanks” ~Inspire Member

Five patients who had been through the treatment responded, explaining the reasons for using androgen deprivation therapy (ADT) and suggesting medications to bring up with their oncologists.

Members with advanced prostate cancer also discuss options. For example, a caregiver wanted to find out about next steps:

“after three cycles of chemo (with a 6 months __drug name__ break after first chemo series) we opted for a clinical trial at our cancer center in __name of town___. The combination of the two drugs ___ drug name ___was very harsh, and my husband – who had taken chemo quite well – was hospitalized three times. We…need to quickly decide what we do next. Has anybody tried some combination with immunotherapy?” ~Inspire Member

Five members shared their treatments in fifteen responses. Members suggested sharing pathology reports for second opinions:

“get your slides sent to __medical center__, __physician’s name___to get a 2nd opinion, they only do pathology on prostate cancer.” ~Inspire Member

In the Inspire forum, patients give each other detailed information on their treatment and describe what led to decisions that they make with their physicians on medications.

“I’ve been on __drug name__ for two months, now. _physician’s name__ prescribed making the switch from __drug name__back in __month__ and so far so good. Some fatigue and weakness but I am also on a bunch of other meds so who knows. He has me taking it before bedtime and I sleep very well – nice benefit from it. My appetite, etc. has been good. I continue to exercise daily to stay fit and try to ward off fatigue and weakness. You can check my profile to see what I’ve been up to as far as treatment goes – it includes __drug name__per __protocol name__. Second infusion scheduled for today.” ~Inspire Member

Inspire is honored to be partnered with the first prostate cancer support group in the US, an organization founded in 1990 by people affected by prostate cancer. Their dedication brings education and the kind of compassion that only those who have walked the same path can provide.

“Through our support groups, online support services, newsletters, educational materials and events, Us TOO will help transform resignation into determination and fear into Hope.”¹