The Best Lung Cancer Blogs

A diagnosis of lung cancer can leave you overwhelmed. But you are far from being alone. There is a community of people who know exactly what you are going through.

“People write and say that until they found my blog, they just had no hope. Part of it is because 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 past 16 years, it hasn’t stopped me from living.

Whether you are looking for inspiration or for more information on the latest cancer research, you can turn to a blog. Here are some tips for finding the one that’s right for you.

Find the right fit

Janet Freeman-Daily, a writer who was diagnosed with lung cancer in 2011, used to keep a list of all bloggers active on lung cancer. But in the end, she couldn’t follow. She thinks it’s a good sign. “As more and more people started taking targeted therapies, people started to feel better and live longer, which is why we have more advocates and more people writing blogs. ”

If you’re looking for good writers, she suggests looking to social media. Look for posts under the hashtag #LCSM, which is short for “lung cancer social media.” When you find someone whose tone you like, check if they have a blog, she said.

Olson gives this advice: “If it makes you feel good and you’re glad you read it, then I think you’ve come to the right place.”

Challenges

If you’re part of the lung cancer community – whether it’s through social media or blogging – you risk losing people you care about or connect with, says Olson. It’s just something you have to figure out from the start, she says.

“I never thought I would have a life where I came to take care of so many people who were dying. And the first ones rocked my world, ”says Olson. “I had to chat with myself a bit and decided that what was worth it was the privilege of knowing other human beings as they go through this situation and sharing their experiences.

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Personal blogs

A good blog shows the reality of living with this disease, says Freeman-Daily. 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 are feeling shitty,” she says.

Some examples:

Life and Breath: Surviving Lung Cancer. Olson started his blog over ten years ago. You can research its catch on topics like parenting, side effects, and even death. “She has a really good way of describing what she is going through but also of living in the moment and enjoying it,” says Freeman-Daily.

Olson says his blog is real but upbeat. “If things go wrong, I’ll share that. But I also have a good sense of humor. And I try to keep a positive goal on the horizon so that the people who come to my blog don’t feel worse. “

You’ll also find out what Olson’s transition to a new clinical trial looks like. She says she is now on her fifth.

Every breath I take Lisa Goldman is a mother in her 40s with lung cancer. It includes information on books to read, other blogs to check out, and anecdotes about her own life. “She tends to be very humorous,” says Olson. “And I appreciate that.”

Gray connections. This Freeman-Daily blog has a very different style, says Olson. It is for those who want to know why certain cancer treatments are used or what research exists.

Freeman-Daily, who has an engineering background, says she likes to break down the science and experience of cancer into simple terms. “The comments I get from my blog that mean the most to me is when someone says, ‘I couldn’t explain to my family what it was like to have this, so I just told them shown your blog. You said exactly how I feel. ”

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Medical or non-profit blogs

Your doctor might not suggest personal blogs. They may want you to research trusted organizations first. But some of these sites also offer blogs. Christine Bestvina, MD, a thoracic oncologist at the University of Chicago, directs people to:

  • LUNG, a nonprofit organization with a blog that shares stories from survivors, as well as updates on research and advances in lung cancer treatment.
  • Cancer.net, a site managed by the American Society of Clinical Oncology (ASCO). Her blog provides physician-approved information for all types of cancer. You can use a tab to narrow your search to lung cancer.

The American Lung Association also maintains a blog, called Every breath. He talks about many lung diseases, but you can filter your lung cancer search by subject and keyword tabs. There you will find details about biomarker testing, mentoring programs, and stories from other people 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 Angels Imerman. You can connect with a qualified mentor, he says, whose cancer diagnosis and journey matches yours.

Other resources

Some people find support through online biomarker groups. These include people with the same genetic changes in their cancer. “There are communities that form around these genes,” says Freeman-Daily. “You can go and get information about lived experiences and which drugs cause which side effects that might not be available in the general information.”

These are usually Facebook groups, she says, but you can also search social media or visit the websites of:

  • ROS1cancer
  • ALKpositive
  • Exon20group
  • EGFRcancer
  • KRASkickers
  • METcrusaders

Talk to your doctor

It’s okay to be curious about treatments that help others. But you shouldn’t be using a blog for medical advice. Always talk to your doctor before making any changes to your cancer care.

And if you still have a lot 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).

Sources

SOURCES:

Linnea Olson, blogger, Outlivinglungcancer.com.

Janet Freeman-Daily, blogger, Grayconnections.net.

Tim Pearman, PhD, director of supportive oncology, Robert H. Lurie Comprehensive Cancer Center; professor of medical social sciences and psychiatry and behavioral sciences at Northwestern University Feinberg School of Medicine.

Christine Bestvina, MD, thoracic oncologist; assistant professor of medicine, University of Chicago.


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