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Thirteen years ago today, I experienced a revival of hope. In mid September 2012, I had learned my cancer had grown despite two different lines of chemotherapy plus radiation. But on this date, the University of Colorado notified me that my tumor tissue tested positive for a gene rearrangement called ROS1, and I was eligible for a clinical trial of the targeted therapy pill crizotinib. I had options again!
Today I’m still on the same daily pill. Cancer research is awesome.
Chances are strong that at least one person you know and love (or even you) will have cancer at some point. Why should you care? Because people are dying for better cancer treatments.
We still do not know how to cure most cancers. Now the funding that has fueled so many new discoveries in recent years—like the targeted therapy I’m taking, which has kept my cancer in check for nearly 13 years—is being throttled. Training programs at universities are being defunded. Labs are closing. Scientists are leaving the US for countries where their research is valued. We’re losing years of painstaking research that cannot be replaced.
The 2025 World Conference on Lung Cancer (WCLC) in Barcelona, Spain, concluded on September 9, 2025. I was there as part of the admin team for the IASLC STARS Scholar Program (STARS = Supportive Training on Research and Science). It was wonderful to see the number of lung cancer patient research advocates actively participating in the scientific panels and presentations. It was also exciting to see my rare type of lung cancer have a plenary session presentation–ROS1+ cancer wasn’t even in the diagnostic guidelines when my lung cancer was first diagnosed in 2011.
Six years ago (2019) I also attended WCLC in Barcelona. It was the first-ever STARS program, and several of my friends in the lung cancer advocacy community were there; a few were even presenting. However, that’s a bittersweet memory. Of the thirteen patient/advocates in the WCLC 2019 pictures in this post, six are no longer with us, including Linnea Olson (one of the first lung cancer bloggers and a dear friend who encouraged me to become an advocate). I can’t think of WCLC in Barcelona without thinking of them. They all ran out of time before new treatments became available.
While it is encouraging to see lung cancer research continue to make strides over the past 15 years, people are still dying of the disease. Cuts in research funding at the National Cancer Institute and other organizations threaten to slow the pace of progress for all cancers This New York Times gift article titled “Trump is shutting down the war on cancer” (free to read) gives a more detailed description of the dire funding situation facing cancer research in the USA.
I don’t want to lose more friends to cancer. Please support efforts to restore funding for medical research in the federal budget. The life of someone you love may depend on it.
Dr. D Ross Camidge is many things.
He’s a world famous lung cancer doctor. He’s an expert in my rare type of cancer (ROS1+ lung cancer). He is the person who started the oncology remote second opinion program at University Of Colorado. He is on the scientific advisory board of the nonprofit I cofounded (The ROS1ders). He is a principal investigator on the clinical trial that saved my life. I’m proud to say he is a personal friend.
On Monday September 8 I learned he is also a person living with lung cancer.
I applaud him for going public with his story. It also breaks my heart.
https://news.cuanschutz.edu/cancer-center/ross-camidge-lung-cancer-diagnosis
Once a person is medically diagnosed with having metastatic cancer (cancer that has spread to other organs), some people accuse that person of lying when the person says they didn’t know they had cancer. Because some cancers might grow for years before spreading to other organs, people think the person with cancer would had to have known they had it.
After more than a decade of living with metastatic lung cancer and serving as a patient research advocate, I have seen plenty evidence this need not be the case. Here are some important factoids about lung cancer that also hold true for other types of cancer:
1. Not all cancers have symptoms while they are growing.
Lung cancer rarely has symptoms until it has spread to other organs. Lungs don’t have nerves to say “ouch!” when a tumor is growing. For this reason, the vast majority of lung cancers were not detected until the cancer had spread elsewhere before the advent of lung cancer screening. But not everyone is eligible for lung cancer screening. Screening is limited to people who are at increased risk of developing cancer and who can benefit from treatment–this is to minimize the risk of overdiagnosing and treating people who don’t need cancer treatment.
2. Not all cancer grows at the same rate.
When I was diagnosed in 2011, I was told my non-small lung cancer did not grow fast and would have taken years to create the 2.5 inch tumor in my lung. I had months of combined chemo and radiation treatments designed to cure me of my cancer. Yet three months after a CT scan said my tumors were almost gone, I had grown a new three-inch tumor at the base of my neck. Some types of cancers are much more aggressive than others.
3. Best practice medical care might not be looking for cancer.
Another friend (age in mid-20s) reported shortness of breath when running. Because they were so young, their doctor took a conservative approach to treatment. My friend was treated for allergies, and then pneumonia. By the time doctors prescribed a CT scan, the lung cancer had spread to several other organs. You can’t find something when you’re not looking for it.
4. Not all cancer is detectable with current technology.
A friend who had lung cancer had a brain scan using magnetic resonance imaging (MRI). The scan showed their brain was clear of cancer. Three weeks later they began leaning slightly to one side while walking. A second brain MRI scan found sizeable tumors in their brain that didn’t show up just a few week earlier. The seeds of those tumors likely existed when they had the first brain scan, but scan technology is not sensitive enough to detect cancer that small.
My take-away message
Don’t assume that someone must have known they had cancer just because it had spread to other organs by the time it was officially diagnosed. Many people honestly had no idea they had cancer before they were diagnosed. I didn’t.
45 years ago today, Mount St. Helens erupted. From my home in Tacoma over 70 miles away, I could hear and feel the blast and see the plume of ash, rock, and hot gases rising into the atmosphere.
Such major blasts of chaotic energy and hot gases produce extensive damage. The explosion darked the skies for miles, extinguished lives, erased forests, and rearranged the landscape. The melted glacial ice generated a lahar that carried away homes, destroyed highway bridges, and clogged shipping lanes. The blast left behind tons upon tons of pulverized rock that continue to cause challenges for communities living downstream–such as clogging their drinking water systems.
Mount St. Helens is now one of the most closely monitored volcanos in the world. Last Saturday at the Cascade Volcano Observatory (CVO) open house I learned about different types of volcanoes, effects of eruptions on living creatures and the earth, how we track and model earthquakes to predict eruptions, understanding lahar flows so we can provide early warnings, and atmospheric influences on that guide ash and volcanic gas distribution. Models for making these predictions depend on data gathered by a variety of sources, such as weather balloons launched by the National Oceanic and Atmospheric Administration (NOAA). We can’t prevent volcanoes from erupting, but we can improve our preparedness and detection abilities so we can help reduce deaths and damage–IF we can learn from history and maintain the will to and funding to do what is necessary.
The posters I’m sharing in this blog were on display at the CVO open house. CVO is part of the Volcano Hazards Program run the by U.S. Geological Survey (USGS), which is under the U.S. Department of the Interior. Many USGS scientists and staff have departed in response to government actions of the past few months. In May the federal government has notified USGS researchers and students that their funds could be frozen and staff could be laid off. Other government cutbacks (such as reduced weather balloon launches) reduce USGS ability to monitor volcano activity, not to mention the U.S. Weather Service’s ability to predict tornadoes and other severe weather.
Despite the devastation, signs of life returned to the desolate blast zone within months, but it will never appear as it did before the eruption. If we don’t actively pursue the objective study of our world, we not only limit our learning about the world we live in, we will become less able to predict impending disasters and protect lives. Guess we’ll just have to adapt when natural disasters strike. If we can.
If anyone is still inclined to think the government’s efforts to delete “DEI” hires are aimed at people hired for reasons other than their skills, consider the case of the Navajo Code Talkers. Pages about them have been removed from DOD websites and replaced with “DEI.”
These Americans had a unique skill that no one else possessed. Their ability to speak in Navajo during WWII created a code that no enemy ever broke. They enabled us to win critical battles during World War II. High-level military leaders said the Allies could not have won those battles without them.
And yet they’ve been cancelled. Erased. Told they were only hired because they looked different than the majority population in the US during WWII, before the civil rights movement even existed. They accomplished it all despite the prejudice against them.
Where are all the objections to “cancel culture” now? Crickets.
I am ashamed of the way our government is erasing genuine accomplishments by people who don’t look like them or fit their definition of warfighter.
I’ve chosen a conservative media site for the supporting news article to show this isn’t a deception by liberal media. The image on this blog comes from this article.
https://www.newsmax.com/amp/newsfront/navajo-codetalkers-dod/2025/03/17/id/1203224/
Take steps to amp up your lung cancer patient advocacy! Applications are now open for the 2025 IASLC STARS PRA & Scholar Programs. STARS (Supportive Training for Advocates on Research and Science) can help you develop and enhance research advocacy skills needed to provide a patient perspective to research.
If you or a loved one has been affected by lung cancer, and you are an active lung cancer patient advocate, you are eligible to apply. Learn more on the STARS website.
Gray Connections 