Q&A: What Can I Do About A Suspected Cancer Cluster?

Here are a few actions you can take, if you suspect you live in or near a cancer cluster.

Photo by Tim Mossholder on Unsplash

I recently had someone write to me with this question, and sadly, it’s one I get often.

Dear Erin,

I live in a little town in [fill in almost any state in the U.S.] I am reaching out to you because I need help. An entire street in my neighborhood needs help. We know many residents who live here with cancer or who have died of cancer.

Is it a cancer cluster? What do we do? Where do we start?

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First of all, my heart goes out to anyone dealing with cancer. It’s a terrible drain to be sick, dealing with doctors and treatments, and even worse to lose someone you love.

For years, I have acted as a kind of reporting agency for suspected disease clusters and environmental issues around the country. Thousands of people contact me every month asking for help and telling me about unexplained diseases in their neighborhood or on their streets. But I’m just one person, and I can’t respond to every person who writes me, so I’d like to give you more tools to empower you in your communities.

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What is a Cancer Cluster?

The CDC defines a cancer cluster as a greater-than-expected number of cancer cases that occurs within a group of people in a geographic area over a period of time.

Cancer is the second leading cause of death in the U.S., so it’s unfortunately quite common, but what is less talked about are the environmental causes of cancer, such as polluted drinking water, poor air quality or toxic chemicals in food or soil.

Substances that cause cancer are known as carcinogens. Many factors influence whether a person exposed to a carcinogen will develop cancer, including the amount and duration of the exposure to that substance.

I’m talking about involuntary exposure to carcinogens. It’s important to know this is not a lifestyle issue, and it’s not your fault if you’ve been unknowingly exposed to contaminated water or soil.

When an entire block or multiple neighbors have the same kind of cancer or a rare form of cancer, it’s certainly cause for concern.

About 1,000 suspected cancer clusters are reported to state health departments each year, according to the American Cancer Society.

The reporting happens at the state level because no national registry exists. Often, these reports go to an abyss, but I still recommend reporting your case to a local or state health department so that the info is there. Think of it as a best practice, but certainly just the beginning of the line.

I’d love to see this change. The federal government should play a key role in identifying and responding to disease clusters because federal agencies have the research, response, and enforcement capacity that states and localities often don’t.

As I’m always saying, Superman’s not coming. We’ve gotta learn how to take action for ourselves and our communities. I’d love for you all to join me in advocating for more federal funds to help understand these clusters.

Get Clear About Carcinogens

The National Toxicology Program (NTP), an interagency program of the U.S. Department of Health and Human Services (HHS), is one of the main organizations that has developed a list of substances that, based on the available scientific evidence, are known or are reasonably anticipated to be human carcinogens.

The NTP publishes the Report on Carcinogens every few years, a congressionally mandated, science-based public health document that NTP prepares for the HHS Secretary.

“The 15th Report on Carcinogens,” is the most recent report that was published in December 2021. It includes 256 listings of substances—chemical, physical, and biological agents; mixtures; and exposure circumstances—that are known or reasonably anticipated to cause cancer in humans.

Eight substances were added to the report that year, including the flame-retardant chemical antimony trioxide, and six haloacetic acids (HAAs) found as water disinfection byproducts are listed as reasonably anticipated to be a human carcinogen.

Antimony trioxide is primarily used as a component of flame-retardants in plastics, textiles, and other consumer products. Highest exposure occurs among workers who produce the substance or use it to make flame retardants.

Other people are potentially exposed to low levels of antimony trioxide from breathing contaminated outdoor air or dust from the wear and tear of flame-retardant-treated consumer products, such as carpets and furniture. State and federal agencies limit exposure to the substance in the workplace and the environment through regulation.

Water treatment removes contaminants and disease-causing agents from drinking water. HAAs are formed during the disinfection of water from a reaction between the chlorine-based disinfection agents and organic matter in the source water.

Approximately 250 million U.S. residents use community water systems and are potentially exposed to HAAs in disinfected water. Municipal water systems monitor for some HAAs. Improvements in disinfection technology, such as filtration methods, can reduce the levels of HAAs in drinking water.

The following six HAAs are included in the report:

• Bromochloroacetic acid (BCA)

• Bromodichloroacetic acid (BDCA)

• Chlorodibromoacetic acid (CDBA)

• Dibromoacetic acid (DBA)

• Dichloroacetic acid (DCA)

• Tribromoacetic acid (TBA)

It’s important to note that the science is ever evolving. So if you suspect a substance might be the cause of your illness, you might need to dedicate more resources to study it. We talked with Susan Wind back in August 2021, who raised more than $100,000 to enlist a team of scientists to test the groundwater, soil, and air in her former neighborhood.

Once you are clear about possible carcinogens, you can then look up who might be releasing those toxic substances in your area.

Is There A Polluter Nearby?

Back in February 2021, we wrote about a tool put out by the EPA that can help you identify polluting industries in your neighborhood.

The Toxics Release Inventory (TRI) is a resource to learn more about toxic chemical releases and pollution prevention activities reported by industrial and federal facilities in your area.

A “release” is when a chemical is emitted into the air or water, or placed in some type of land disposal.

This comprehensive database shows records from every facility that has to report to this inventory (almost 22,000 facilities) throughout the country, but it’s still not an exhaustive list of all the toxins that may be in your community. It can be a good place to start, though.

Test the Water

Do you know what toxins are in your water? You’ve heard me say it before, but it’s worth saying again. Check your water reports! Knowledge is power.

Get a copy of your Consumer Confidence Report (sometimes called a Water Quality Report) from your water company. This annual water report is provided to customers by July 1 each year and will give you details about contaminants that have been detected in your water system. It should come in the mail with your water bill. If you pay your bill online, you should be able to go directly to the water utility’s website and get a copy or request a downloadable PDF.

Each report should list your water source—whether it’s a lake, river, or public well. It will also list the contaminants found in your source water and tell you what levels have been detected. Contaminants found to have a higher level than what the EPA recommends should be listed. Be sure to take note of any violations—meaning the contaminant has been detected at a higher level than the EPA laws allow. If violations are listed, the report should also include how those contaminants may affect your health and how the water utility is working to address the problem.

You can also enter your zip code in to one of these databases to get more info:

The EWG’s Tap Water Database

SimpleLab’s City Water Project

Get Connected

This work can be ongoing and lonely. I recommend finding a few friends or neighbors to join you in this work and help divvy up the research. You may already have a local community group or nonprofit working to improve the water quality in your neighborhood or fight toxic contamination. Join them! Search for local groups or contact national organizations, and ask how you can get involved and help. Let these groups know if there’s a company you suspect might be polluting or tell them about local issues and see how they can help put pressure on the right organizations to follow laws and help make change happen.

Build Your Confidence

No one feels confident in the beginning of any action, but I want to encourage you to push past those initial fears. Don’t believe the thoughts that say “I’m too young,” “I’m too old,” “I don’t have enough experience,” or “I don’t have influence or power.” Now is not the time to let those fears take over. I’ve seen people of all ages and backgrounds fight for what they feel is right and win.

Take the attention away from yourself and put it on your message. Think of each and every person in your community that you can help. Remember you just need enough confidence to take that first step in the right direction.

Get Inspired

Need a little inspo to kickstart your journey? Look to the Flint Community Cancer Consortium. In late November, dozens of cancer researchers from across the state and country convened in downtown Flint to meet with community organizers and public health leaders as part of an effort to determine whether the water crisis had an impact on cancer rates in the city.

While lead was the main story in Flint, a lesser-known water issue was also happening. Total trihalomethanes, or TTHMs, are a disinfection byproduct that can form from a reaction between organic material in the water and chlorine. Research has connected high-level exposures of TTHMs to increased cancer risk.

The consortium is a community-driven effort that has grown out of a years-long push by activists and residents to bring attention to cancer concerns.

“I am ecstatic, words can’t even explain how I’m feeling right now to see all of you and be amongst all of you,” community activist Arthur Woodson, who has been vocal about the concerns among residents and spent years advocating for more attention on the issue, said at the event, as reported in the Detroit News. “I feel so privileged to be able to speak with you and share the history of what’s been going on.” 

The cancer consortium grew out of Woodson’s activism and a series of conversations looking at how to determine what a cancer cluster study could look like.

Support Trevor’s Law

Federal legislation meant to help track and investigate suspected cancer clusters was passed back in 2016. Trevor’s Law, named after my friend Trevor Schaefer, an Idaho native who inspired the law after he survived childhood brain cancer in 2002 at age 13, is part of updated legislation that helped reformed the Toxic Substances Control Act of 1976.

Unfortunately, no action has been taken at a federal level since the law went into effect. No new guidelines have been issued on how to respond to possible cancer clusters and no investigations have taken place at the federal level.

The law was intended to make it easier for state and local officials to coordinate with the federal government.

“Many of these cancers could have been prevented,” Trevor told NBC News in 2021. "How many more children have to suffer before our government follows their own law?"

You can Support Trevor’s efforts at Trevor’s Trek Foundation, as well as asking your local officials how they are tracking cancer cases and demand that more resources go to research and understanding how toxic pollutants are impacting all of us.

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Have more info to share about your experience with cancer clusters? Add your voice and share your resources in the comments below!