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 Forbes.com 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
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.
First, Eve, I’m SO glad to have you blogging here. What a great voice.
Second, Jody, having not seen the news elsewhere, I’m shocked at your news – and newly attuned to the power of your narrative. I’ll comment over there.
This is so important. Thanks to both of you for conveying why this matters.
Thank you both.
The reality of late recurrences in hormone-sensitive breast cancer — oh, surprise – is swept under the early detection = cure rug. There is so much more myth busting to do. And I’m fine with using the digital space to do just that!
I appreciate your support.
Yes, thank you, Eve, for shining a light on Jody and thank you, Jody, for sharing your story.
In case anyone missed it, the New York Times magazine cover story on Sunday addressed “Our Feel-Good War on Breast Cancer” and put the lie to the “early detection=cure” myth:
On a personal note, I’m sending my best wishes for strength, Jody!
I’ll say here what I’ve said elsewhere: anyone who thinks “it can’t happen here” is deluded. It – metastatic breast cancer – can, and does, happen everywhere. All the pink ribbons in the world can’t cover up that fact.
First (and most importantly) I wish Jody were not joining us. No one wants to be in the metastatic breast cancer club. However, if we have to be here, it comforting to rely on #bcsm and other peer-based sources of support.
There is a slight error in your copy:
“Schoger is one of the 150,000 American women previously treated for early stage breast cancer who are now living with metastatic breast cancer…”
While most people do arrive at a metastatic breast cancer diagnosis after previously being treated for early stage breast cancer, about six to 10% are Stage IV from the start. (I was.)
That’s #5 on “13 Things Everyone Should Know About Metastatic Breast Cancer.” See: http://mbcn.org/developing-awareness/category/13-things-everyone-should-know-about-metastatic-breast-cancer/
Please let us know if we can provide any further information on metastatic breast cancer.
Knowledge is power!
Metastatic Breast Cancer Network (www.mbcn.org)
Oops, of course you’re absolutely right, Katherine. THANK YOU for the correction: another demonstration of the power of community!