As someone with strong online support connections, when mom was diagnosed with stage 4 pRCC (papillary renal cell carcinoma), a rare form of a rare cancer, I felt the need to find some online community. It was not nearly as easy as it is for breast cancer, in that there are not a ton of communities to choose from, but on the other hand, it was easier to find a community and there was an immediate sense of community when I joined.
The first place I looked was Facebook. For me, that is the easiest place to find online communities. Plus I know that mom uses Facebook, so she could also join and follow the community. Initially, I found a community for Kidney Cancer, but then found one specific to pRCC.
In addition to the facebook community, I’ve been searching for bloggers with pRCC, or even RCC. Google searches aren’t as easy anymore, as they find a lot of community blog sites, and not individual blogs. After asking in the Facebook group, I was connected with the blog SingleWhiteKidney – who in addition to have pRCC, she is in the #PAPMET trial and she is an awesome writer. If you want to learn more about what is means to live with kidney cancer as a 30-something, I recommend checking out her blog. In addition, her story gives hope, as she has been on one of the MET- inhibitors for 1.5 years now and is NED (no evidence of disease).
If you know of anyone who blogs and has stage 4 kidney cancer, or pRCC, please leave a link to the blog in the comments. I’d love to follow it.