Rare cancer meets social media

“There’s no evidence that chemotherapy will work, so what do you want to do?”. This sentence has been delivered from countless oncologists to just about every member of our angiosarcoma support group, myself included. I had read the literature, and I knew that there were far too few patients to drive the hard data necessary to build a deep understanding of this disease. But, what do I want to do? I want to live!

We all want to live. Universal truth folks.

I walked in the shoes of someone going through the diagnostic process of breast cancer…for about a month…. And as horrible as it was, I was comforted by the countless resources that seemed to be available to me. I had statistics in the tens of thousands, I had community doctors that saw this disease on a daily basis. There was literature and dedicated labs unraveling the genetic underpinnings of this disease. I had pink. Everything was pink, everyone would help me. The NFL had me in mind during breast cancer awareness month, Dick’s sold pink chairs on my behalf. I don’t begrudge anyone with breast cancer, or any cancer for that matter. Nor am I trying to trivialize a disease that is killing women (and men!) at an alarming rate, despite the global effort to thwart it. But when the cancer in my breast turned out to be angiosarcoma, all the “comforts” of a more mainstream diagnosis fell into a black hole that opened up right next to me. I couldn’t even see the rays of light that I knew were trapped by the enormous gravity that was pulling me in.

Primary angiosarcoma of the breast…what do I want to do…..

When faced with mortality, I think the first thing many of us do is try and find someone, ANYONE else who understands what we’re going through. I put feelers out into every corner of the Internet. And I found people! I sent them messages and received nothing in return. Turned out they were gone, all of them, by the time I tried to reach them. So I turned to facebook in a last ditch attempt to find anyone who knew anything about this disease. And I found her. The one and only Lauren Ryan, along side eight other members of an angiosarcoma facebook group that Lauren started in 2010. Every single one of them was alive. They were ALIVE. I instantly connected with each of them. Josephine was 3 years out from my same diagnosis and was ALIVE. Lauren was a year and a half out and had no evidence of disease. They took me under their wing and provided me with hope in spades. I clung to every word they wrote. It was the same story eight times over. Lauren and I partnered up on many fronts and decided to blow this disease out of the water..but that’s a story for another time.

Eight angiosarcoma survivors slowly turned into ten, then twenty. Each time a person found us, we knew they would feel that same profound sense of relief. When we would connect with each other, we knew it wouldn’t save our lives, but it went far in saving our sanity. But we continued to grow, and with that growth came a wealth of knowledge. There are now over 1,800 members in our support group and collectively, we house the world’s knowledge on this disease. Want to know which doctors know the most about angiosarcoma? Ask our group. Want to get an appointment expedited to see them? We can do that. Want to get anecdotal evidence for a particular drug? I can almost guarantee that you’ll get a handful of people who have been on it..no matter how obscure the regiment. Want hope? We have long-term survivors who will go to the ends of the earth to comfort you. Need to vent? We get it. All of us.  When people find us now, it actually might change the course of their disease. We have sent so many people to the same doctors that they have become clinical experts. These doctors now understand nuances of this disease that weren't  possible when only a handful of angiosarcoma patients would come through their clinics each year. Patients who get treated at these large volume centers bring the knowledge from these clinician experts to their local doctors. As a result, the patients are driving expertise in this rarest of rare orphan cancers, and that expertise is filtering out into local clinics. All because of Lauren, and our collective need to connect with others diagnosed with angiosarcoma.

“What do you want to do? We now have evidence that this regiment might extend your life” is a sentence that many people diagnosed today are hearing. It’s not the cure that we are diligently working toward, but it’s a giant leap toward better therapies for those of us fighting on the fringes of cancer.