A lung cancer diagnosis can leave you feeling overwhelmed. But you’re far from alone. There’s a community of people who know exactly what you’re going through.
“People write and say that until they found my blog, they just didn’t have any hope. Part of that comes from the fact that I’ve lived so long,” says Linnea Olson, who was diagnosed with lung cancer in 2005. “But I also think it’s because my blog makes it clear that even though I’ve had cancer and been in treatment for most of the last 16 years, it hasn’t stopped me from living.”
Whether you’re looking for inspiration or for more information on the latest cancer research, there’s a blog you can turn to. Here are some tips on how to find the best one for you.
Finding the Right Fit
Janet Freeman-Daily, a writer who was diagnosed with lung cancer in 2011, used to keep a list of all active lung cancer bloggers. But eventually, she couldn’t keep up. She thinks that’s a good sign. “As more people started taking targeted therapies, people started feeling better and living longer, which is why we have more advocates and more people writing blogs.”
If you’re looking for good writers, she suggests turning to social media. Search for posts under the hashtag #LCSM, which is short for “lung cancer social media.” When you find someone whose tone appeals to you, check to see if they have a blog, she says.
Olson gives this advice: “If it makes you feel good and you’re glad you’re reading it, then I think you’re in the right place.”
If you’re a part of the lung cancer community — whether through social media or blogs — you may lose people you care for or connect with, Olson says. That’s just something you have to understand from the beginning, she says.
“I never thought I’d have a life where I’d come to care for so many people who’d die. And the first few just rocked my world,” Olson says. “I had to have a little chat with myself, and I decided what made it worthwhile was the privilege of knowing other human beings while they’re going through this and sharing their experiences.”
A good blog shows the reality of what it’s like to live with this disease, Freeman-Daily says. But she says it should also show you that life can go on. “I think it helps to find blogs where people are trying to find a positive way to live with lung cancer and despite lung cancer, even when you feel crappy,” she says.
A few examples:
Life and Breath: Outliving Lung Cancer. Olson started her blog more than a decade ago. You can search for her takes on topics like parenting, side effects, and even dying. “She has a very good way of describing what she’s experiencing but also living in the moment and taking advantage of that,” Freeman-Daily says.
Olson says her blog is real but upbeat. “If things are going badly, I will share that. But I also have a sense of humor. And I try to keep a positive goal on the horizon so people who come to my blog don’t leave feeling worse.”
You’ll also find out what it’s like when Olson switches to a new clinical trial. She says she’s now on her fifth.
Every Breath I Take. Lisa Goldman is a mother in her 40s living with lung cancer. She includes info about books to read, other blogs to check out, and anecdotes about her own life. “She tends to be very humorous,” Olson says. “And I appreciate that.”
Gray Connections. This blog by Freeman-Daily has a very different style, Olson says. It’s geared toward those who want to learn why certain cancer treatments are used or what research is out there.
Freeman-Daily, who has an engineering background, says she likes to break down the science and experience of cancer in simple terms. “The feedback I get back from my blog that means the most to me is when somebody says, ‘I couldn’t explain to my family what it was like to have this, so I just showed them your blog. You said it exactly how I feel.’”
Medical or Nonprofit Blogs
Your doctor might not suggest personal blogs. They might want you to seek out trusted organizations first. But some of these sites also feature blogs. Christine Bestvina, MD, a thoracic oncologist at the University of Chicago, directs people toward:
LUNGevity, a nonprofit with a blog that shares survivor stories, along with updates on research and progress in lung cancer treatment.
Cancer.net, a site run by the American Society of Clinical Oncology (ASCO). Its blog gives doctor-approved info for all kinds of cancer. You can use a tab to narrow your search to lung cancer.
The American Lung Association also keeps a blog, called Each Breath. It talks about many lung diseases, but you can filter your search to lung cancer through the topic and keyword tabs. You’ll find details on biomarker testing, mentor programs, and stories from others living with lung cancer.
Blogs run by ASCO or the American Lung Association are probably OK, says Tim Pearman, director of supportive oncology for the Lurie Comprehensive Cancer Center. But he’s a bigger fan of peer support groups like Imerman Angels. You can connect with a trained mentor, he says, whose cancer diagnosis and path matches yours.
Some people find support through online biomarker groups. Those include people with the same gene changes in their cancer. “There are communities forming around these genes,” Freeman-Daily says. “You can go and get information about lived experiences and which drugs cause which side effects that might not be available in general information.”
These are usually Facebook groups, she says, but you can also search social media or visit the websites of:
Talk to Your Doctor
It’s normal to be curious about treatments that help others. But you shouldn’t use a blog for medical advice. Always talk to your doctor before making any changes in your cancer care.
And if you still have lots of medical questions, Pearman suggests asking your doctor if you can meet with a health educator. You can also find evidence-based guidelines through the National Comprehensive Cancer Network (NCCN).