Search all of the Society for Participatory Medicine website:Search

SPM member Jody Schoger’s post “Cancer: Part Two” at her blog Women with Cancer landed with a big thud on April 26. Schoger was recently diagnosed with metastatic breast cancer. She’s a co-founder of #bcsm (breast cancer social media), one of the highest rated Tweetchats with almost 6,000 tweets per month.

In less than two years the group has gained so much momentum that it has branched into other media. Dan Munro discussed the #bcsm phenomenon in in March. “What #BCSM does exemplify…is how to be open, direct and cut through the layers of healthcare bureaucracies we’ve spent decades building,” he wrote.

In an email to me Schoger said “To be empowered and engaged…means I know what to do now that this has occurred.  I know how to navigate and who has my back.”  Schoger is one of the 150,000 American women previously treated for early stage breast cancer who are now living with metastatic breast cancer, which is the only fatal kind. “It can occur 5, 10, 15 or even 20 years after a person’s original diagnosis,” according to the Metastatic Breast Cancer Network.

In Forbes, Munro quoted Schoger as saying

#BCSM is true grass roots effort…We have absolutely no intention of reinventing the breast cancer wheel or duplicating the work of other breast cancer organizations. But we have every intention of reshaping how social media can be used to empower women affected by cancer. (emphasis mine)

Symplur measured 2.6 million impressions resulting from #bcsm April 29. Participants in the rapid-paced tweetchat were sad, angry and more focused than ever.

Schoger’s most recent post starts this way:

Friday, April 26, 2013

Cancer: Round Two

This is how things change.

On Tuesday, April 9 we celebrate DH’s (darling husband’s) birthday with an extravagant dinner with friends at our favorite restaurant. We make happy noises about the food and pass around bites so rich it is absurd to even contemplate their arterial impact. We simply go with the moment and taste everything.

The next day I’m at MD Anderson for my yearly visit to the survivorship clinic. This will mark – let’s celebrate anyway – my 15th cancer-free year.  The mammogram shows an anomaly.  We take another view. The second shot is inconclusive.  My nurse practitioner meets me in the exam room and says, “I don’t want to alarm you, but we need to get another an ultrasound to make sure it’s benign.”

I’m not alarmed. Lobular breast cancer, which affects approximately 10 percent of all breast cancer cases, does not image well.  Never has, never will.  It’s sneaky. The cells line up in a single file instead of clustering to form a mass.

Read the rest of this blog post at Schoger’s blog.


Please consider supporting the Society by joining us today! Thank you.