St. Clair County Health Department

Investigation Methods

Q: Why would you take a study on children under 5 years when that does not include the children in our area? By using only data for children under 5, that skews the data and makes for invalid results for St Clair County. Who chooses to exclude the older children? Shouldn’t the taxpayers have a voice in how this is done? By choosing ALL the children for the study- what would the results look like? Can we have that data? The CDC should have the statistical results from ALL our cases! Am I wrong to say the Health Dept used age brackets that would make our county look better on paper? Why are you calculating incidence by the whole county rather than looking at Marine City alone? Why are you diluting the incidence over 10 years instead of the last 4 years?

A: The decision to include only the children under 5 in the statistical analysis was made by epidemiology experts in cancer cluster investigations at MDCH. All options were fully considered (all cases regardless of age, cases just in Marine City area, and calculations of different time frames, etc). It was felt that using the age group in which the cancer had the highest rate of occurrence would be most likely to show statistical significance. This is partly because you are using a much smaller denominator and higher case per population ratio. The intent was to make this cluster look as statistically significant as possible given the relatively small numbers we are working with. Since we have had many questions like this, and it is not easy to explain even with a background in statistics and epidemiology, we have asked MDCH to review these issues.
Q: How many of the cases had other “issues” other than Wilms? Such as kidney failure, dialysis, Denys-Drash Syndrome, etc? 2007-2011: 7 cases of Wilms County wide. Where exactly were these 7 cases geographically? What are the locations in the St Clair County of the last 7 cases of Wilms tumor?

A: Over half were in the Marine City area, with the others in areas that seem unrelated regarding possible exposure routes or mechanisms. SCCHD is required to maintain confidentiality of all personal health information acquired during any service. Although we understand that this investigation is very public in nature, the details or identification of each case will not be made or discussed publicly by our agency. The very nature of having so few cases makes the issue of recognition and confidentiality a particularly difficult one and we request that you respect this obligation.
Q: Have all cases been interviewed. By whom and how?

A: Yes, all cases were reviewed by either the Medical Director, Dr Mercatante, or one of the Public Health Nurses assigned to this duty. All cases were contacted by phone. Some interviews were more extensive than others.
Q: Have all involved been through genetic testing?

A: SCCHD has not engaged in any histological or tissue specimen review. Nor have we done any chart reviews, familial or genetic histories, or extensive environmental exposure reviews. This would be the work of a Stage 3 study.
Q: At what point and when has Stage 3 or 4 been performed?

A: When someone has the resources and data to support it. Compelling data would be more likely to attract further research, particularly related to more extensive case reviews. Since there is no clear environmental exposure linked to Wilms either in the literature or in our local community, we simply need more information before we can move forward. Hopefully we can find someone willing to do this work. It is beyond the capacity of our department to do this with the resources we currently have.
Q: Have any comparative pathology of the kidneys which have been removed from the children (toxicity testing)?

A: Not that we are aware of. Nor are we aware of any such tests existing that would determine toxicity related to a cancer of this type.
Q: You mentioned one common link to Wilms on a national scale – any common links to the “lucky 7” Wilms patients? Any common links with the mothers of the “Lucky 7”?

A: We have not seen anything in the literature that strongly connects Wilms Tumor on a national scale. There is considerable research on the mutated segments of particular genes, but these mutations are not universal. Other associations such as pesticide exposure, hair dyes, and coffee and tea consumption are not consistent or strong across different studies. No obvious links are apparent with the review of the cases so far, but this was not an extensive review.
Q: In Marine City and East China there are perhaps 1000 kids age 0-15. Based on what we would expect 1 case every 20 years. 5 cases in 5 years is so bizarrely out of scale that I would like someone to try to defend the statement “this might be due to chance.” It would be more plausible to say “Jimmy Hoffa died of natural causes”.

A: The statement from MDCH was “these increases were not high enough to rule out it being a chance finding due to the relatively small number of cases. When the rates are based on only a few cases, it can be very difficult to distinguish random fluctuations from the true changes in the underlying risk of disease”. With this being said, our Department is not dismissing this as chance occurrence regardless of how difficult this is to prove mathematically.
Q: Have there been statistically significant cluster of Wilms in the USA?

A: Not that we are aware of.
Q: Might these defects be caused by something the fathers were exposed to and are you checking for links between the father if this is the case?

A: Yes, paternal associations are mentioned in other studies of Wilms. We have not interviewed all the fathers or examined this area closely.
Q: Will the pathology results of each of the cases be reviewed collectively for potential links or similar mutations of the disease?

A: We had a limited discussion with a researcher related to this issue, but there has been no commitment by anyone to pursue this at this time.

Environmental

Q: The Sierra Club recently cited the Detroit Edison Coal Plant in Marine City as an environmental hazard.

A: We are aware of the concern. DTE’s Toxic Release Inventory Report indicates that they are in compliance with applicable environmental regulations. For environmental compliance info, visit DTE @ their Toxic Release Inventory Reporting page. You may also contact MI Dept of Environmental Quality (MDEQ) @ 586-753-3700.
Q: Is the county involved in investigating the coal plant?

A: To our knowledge there is no investigation being done on the power plant. For environmental compliance info you may contact MI Dept of Environmental Quality (MDEQ) @ 586-753-3700.
Q: What should Marine City be doing?

A: Communicate with your local elected officials who can act as a liaison between residents and other resources. They may be able to further assist in answering your questions and concerns.
Q: Has anything been linked to old water pipe?

A: At this time there are no environmental links identified.
Q: Is it safe to swim at MC beach?

A: The Health Dept monitors beaches for bacteriological quality however no monitoring is done for any other type of risk. Visit the Michigan BeachGuard link @ http://www.deq.state.mi.us/beach/Default.aspx?County=74.
Q: Why kids in Canada don’t have this?

A: There are Wilms Tumor cases in Canada. Their province-wide incidence rate is similar to Michigan’s.
Q: Why are there not samples for water and air pollutants in our area? Could you please repeat why samples are not being taken to ensure safe water and air?

A: MDEQ does environmental compliance monitoring for certain industries and community drinking water. Contact MDEQ @ 586-753-3700.
Q: How can we control what plants or factories put in our water and air?

A: There are current controls for what industries are allowed to discharge in our air and water. Federal & state laws regulate pollutants & emissions. For more info on these types of laws visit http://www.deq.state.mi/lawsandrules/ or http://www.deq.state.mi.us/pubcenter/.
Q: Can anything parents consume cause this?

A: Some of the literature has suggested that there may be a link between personal care products and household products. For more info visit the National Cancer Institute’s Surveillance Epidemiology and End Results (SEERS) link @ http://www.seer.cancer.gov/publications/childhood/renal.pdf.
Q: What is it going to take to test the water? What is the list of heavy metals & toxins that the water dept. tests for? Does it include Cadmium?

A: Your drinking water is being tested as required by Environmental Protection Agency (EPA) standards. Test results are reported in a Consumer Confidence Report that is available at your local water dept. Visit http://www.epa.gov/ for the EPA drinking water standards. You may also contact MDEQ Community Water Supply Program @ 586-753-3853.
Q: How is Canada cooperating with the investigation?

A: Canadian officials were very quick to respond to our request for Wilms Tumor data.
Q: What changes will be made to regularly test our drinking and public swimming waters to detect possible exposure to cancer causing agents?

A: No changes are being planned at this time. Your community drinking water supply is already being tested as required by EPA standards. Refer to your water dept’s Consumer Confidence Report. Beaches are monitored for bacteriological quality (refer back to question #5).
Q: What tests have been done in our local air & water that can rule out causing cancer?

A: Other than the sampling required by law, which may include some testing for carcinogens, there has been no additional sampling conducted (refer back to DEQ regulation links- question # 8).
Q: In the present and the past, what kind of testing has been done to monitor the water, air and soil? I’m asking this since we live across the river from “Chemical Valley”?

A: Some soil testing is done after the clean up of a known contamination. For additional environmental monitoring info contact MDEQ District Office @ 586-753-3700.
Q: How do we stop Canada from dumping in our water? Intake alarms not working for our water. Prevention. Pesticides – ponds overflowing from Canada.

A: There are regional environmental groups for which you can become involved. Visit Friends of the St. Clair River @ http://www.friendsofstclair.ca/www/index.html.

A: The drinking water monitoring systems were put in place with state and federal grant money however they have never been fully funded for operation. We are involved in ongoing discussions regarding the funding mechanisms for the drinking water intake monitoring system.
Q: Pipeline middle St. Clair River – Who monitors what is dumped into water by Chemical Valley Canada?

A: We are aware of multiple pipelines under the St. Clair River. These pipelines are regulated by the US Dept of Transportation (USDOT). For more info visit http://www.phmsa.dot.gov/pipeline. The Ontario Ministry of the Environment monitors industry throughout Ontario, Canada. Visit their website at http://www.ene.gov.on.ca/environment/en/index.htm.
Q: Why do the families in Canada receive a warning phone message when chemicals are blasted in the air by mistake and we get nothing! I know this because my family lives there and would call me to let me know. It concerns me because my daughter had a tumor removed at age 7 and it is a great concern for me. Who is notified if there are any chemical spills on this side of the river? What process is in place currently to let MI residents know when there is a release of chemicals from on e of the facilities in Chemical Valley?

A: We spoke directly to MDEQ and we were informed that they are notified by the Ontario Ministry of the Environment when spills or releases are reported.
Q: Why don’t you Ames test water & air samples to see the mutagenic potential of environmental sources? I look at the prevailing winds – Marine City is in the fallout zone of Sarnia’s smokestacks.

A: Ames testing is a screening test that is used to help to identify chemicals that affect the structure of DNA. These DNA changes called mutations were expected to indicate a chemicals ability to cause cancer, however this test has not been found to be as reliable in predicting carcinogens as hoped. We now know that a positive result in an Ames test does not in itself indicate that a particular chemical is capable of causing cancer. It may indicate further testing is needed. We will consult with MDCH and CDC regarding the feasibility of using this test if sampling is done. As for wind direction, we understand that it plays a role in how much pollution can be distributed from a source to a distant community. For further info on how air quality is monitored in MI, contact MDEQ Air Quality Division at 586-753-3700.
Q: What water source have these parents/kids been in contact with in their home? Well water or city water?

A: There are multiple city and well water sources.
Q: Are residents notified in a timely fashion the day of an incident? Should a boil alert be issued on that day? A: They are not notified of every release and spill. MDEQ has informed us that they will act accordingly with notifications if the spill or release is of a significant nature.

A: Boiling your water is only effective for a bacteriological concern. Your local water dept will advise you to boil your water in the event of a bacteriological concern. Boiling your water in an event of a chemical contamination will only concentrate the chemical and should never be done!
Q: How are you going to have evidence of contamination if no sampling of the environment is being done? (water, earth, etc.) This is a kidney cancer – wouldn’t you think it is something being consumed?

A: The Health Department is following The Centers for Disease Control (CDC) guidelines which state that “premature environmental measurements should be avoided, since they may be unfocused and uninterpretable”. To date, no relationship to Wilms Tumor and a specific exposure has been identified. We believe that a more detailed study of the Wilms cases would be a better way of determining a more focused approach to environmental sampling. Our local Health Dept does not have the capacity to do this type of study. A: Kidneys can be affected by anything in the bloodstream. Chemicals can enter the bloodstream by inhalation, ingestion, skin contact, as well as exposure in the uterus. It is premature to eliminate any of these possible exposure risks.

Medical

Q: Who do I contact with info of Lung cancer within last 4 years on one road…of 3 women….there has been dumping of chemicals…well water with high chlorine….?

A: Direct specific cancer, environmental concerns and information to healthdept@stclaircounty.org. In some cases we will not be able to provide you with answers that satisfy expectations, however we can give you reliable resources to investigate on your own. Remember that “facts” on the internet and elsewhere, are not necessarily that. Be a critical thinker of the information you find.
Q: How concerned are our Canadian neighbors – and are they aware about the cancer cluster?

A: We (SCCHD) contacted them early in the process once we decided to investigate. Lambton County’s Health Officer was quick to respond with reliable and straightforward information about the cases of Wilms in Ontario and the regional areas of Sarnia and Lambton-Kent. No other information other than Wilms rates was requested. You can contact the Ontario Ministry of Health at http://www.health.gov.on.ca/en/ or by calling their toll free # 1-866-532-3161 or 1-800-267-8097.
Q: Why is (the) investigation being limited to Wilms instead of all pediatric cancers? Why isn’t prevalence of cancer in child-bearing aged adults being investigated?

A: Actually, the limitation of having only one tumor type is quite helpful. Cancer clusters in other areas have typically been of multiple kinds making it very difficult to find meaningful associations and risks. Each cancer is different in what turns it “on”, how it grows, and what king of therapy it responds to. Trying to generalize many diseases to many causes is not only difficult, it is bad science and usually doesn’t stick. The occurrence of Wilms Tumor in higher than expected numbers will more likely attract the interest and researchers that we need to look for real answers that could possibly reduce the likelihood of more cases in the future. (“Wipe Out Wilms”!)
Q: Stating that Wilms is very curable is great, but at their young age what kind of problems occur due to the treatment in their future, such as reproduction?

A: Cancer therapy, which aims at removing tissue that is growing uncontrollably, usually involves things that damage surrounding healthy tissue as a side-effect. Surgery, radiation and chemotherapy all leave scar tissue and damage behind. The risk of this versus the benefit of survival or improved functioning always needs to be considered carefully when deciding on therapy. This is the essence of “clinical trials” that compare one type of therapy to another and try to weigh these pros and cons for the best current answer. In treatment of Wilms Tumor the level of therapy felt to be needed to improve survival depends on how far the tumor has spread before it is found (the “Stage”). Advancements in treatment have greatly improved the cure rates for children with Wilms but there have been a number of long-term results that have been noted in survivors. This includes heart damage, kidney damage, and problems with reproduction, among other things. These worries, on top of fighting the disease itself, is a particularly difficult one for many people fighting cancer.
Q. Does Wilms growth begin in the womb?

A: An immature precursor of Wilms Tumor may start in the kidney during fetal life. The kidneys, like all organs of the body develop while a baby is still in the womb. Wilms Tumor arises when a mistake occurs in a single embryonic or immature kidney cell. Rather than multiplying normally to become mature kidney cells, this change causes multiplication of new cells that grow out of control, eventually resulting in a mass called Wilms Tumor.
Q. What other genetic defects are associated with Wilms?

A: The etiology of Wilms Tumor remains unclear. The tumor may arise in 3 clinical settings: 1) Sporadic; 2) Association with genetic syndromes; and 3) Familial/hereditary. 5% of children with Wilms Tumor have one of several syndromes. Syndrome manifestations vary and an affected child may not have all associated traits. These syndromes include WAGR Beckwith-Wiedmann, Denys-Drash and Perlman syndromes. The Wilms Tumor Suppressor gene, WT1, is important in normal kidney development. This gene is located within the short arm of one copy of chromosome 11013. The loss or mutation of one WT1 allele resulting in genitourinary defects and is the first event required for the development of Wilms Tumor. Although mutation of WT1 is the initiating event in Wilms Tumor arising in patients with WAGR, it is far more limited, but important in sporadic Wilms Tumor.
Q. Can genetic testing be done?

A: Cancer in general is associated and caused by genetic alteration that promotes uncontrolled multiplication of cells. Many genes have been implicated in the development of Wilms Tumor (WT1, WTX, WT2). None of these abnormalities are helpful to predict the development of sporadic Wilms Tumor by prenatal diagnosis. If there is a family history of familial Wilms Tumor or Wilms Tumor associated with congenital malformation then discussing the situation with an oncologist and or geneticist is important.
Q. Are these children more likely to have a reoccurrence of a different form of cancer?

A: Pediatric patients with cancer have a well-recognized increased risk of second malignancy. The cumulative risk of 0.6% to 1.5% at 15 years following diagnosis is in part attributable to known carcinogens such as alkylating agents and radiotherapy that are used to treat the primary cancer. Second malignancies include bone and soft tissue sarcomas, breast carcinoma, non-Hodgkin’s lymphoma, basal cell carcinoma, melanoma, gastrointestinal tract cancer, and acute leukemia. The majority of solid tumors occur within radiation fields.
Q: Out of 8 people that I know, 6 have had cancer, one of which was Wilms. They have lived in this area all of their lives, aged 3-58. Is it caused by our area factories such as Chemical Valley? St. Clair does have a very high % of cancer. I feel that are all part of this “cluster” and your investigation should include ALL of the cancers around here.

A: Cancer is caused by changes (mutations) in a cell's DNA – its genetic "blueprint". Some of these changes may be inherited from our parents, while others may be caused by outside exposures, which are often referred to as environmental factors. Environmental factors can include a wide range of exposures, such as lifestyle factors (nutrition, tobacco use, physical activity, etc.), naturally occurring exposures (ultraviolet light, radon gas, infectious agents, etc), medical treatments (chemotherapy, radiation, and immune system-suppressing drugs used after organ transplants, etc.), workplace and household exposures, and pollution. Substances and exposures that can lead to cancer are called carcinogens. Some carcinogens do not act on DNA directly, but lead to cancer in other ways. For example, they may cause cells to divide at a faster than normal rate, which could increase the chances that DNA changes will occur. Out of over 900 potential carcinogens tested, a little over 100 have been classified as “known” or “probably” to cause cancer in humans. If you take a look at the list you may be surprised at what you find. The unpleasant reality is that cancer is common, with some types of cancer more common than others. In the US men have a 45% chance of being diagnosed with some form of cancer is their lifetime, and women a 39% chance. It is not a single disease and it does not have a single cause. http://www.cancer.org/index
Q. Is St. Clair County the only county in MI where a Wilms Tumor cluster has occurred?

A: We posed that question to the CDC and other experts in our discussions. Although this has not been officially verified, we are not aware of any other Wilms Tumor Cluster investigations anywhere else in the state or the country.
Q: Is further investigation needed related to high cancer incidents in St. Clair County?

A: Not exactly. In order to look for a cause to a problem, you first need to identify exactly what that problem is. The CDC has established very clear guidelines as to what degree of increased incidence over expected incidence they would advise before looking into the problem further. However, sometimes a community will look further because there is a known pollutant, or some other problem that raises concerns.
Q: Any clusters or unusual numbers of cases across the border in Canada?

A: Not of Wilms Tumor from 1985-2007.
Q: What is being done to coordinate between this area and Canada?

A: Notification of communicable disease outbreaks is officially made to the Michigan Department of Community Health by the Canadian Ministry of Health. If a risk is deemed significant, notification is sent to local agencies. We would then issue a warning to those likely to be impacted. SCCHD has met with the Sarnia/Lambton public health workers to develop better communication systems and understanding. We have found these meeting to be very helpful and anticipate more in the future.
Q: Is it true that St Clair County has the highest incidence of cancer in Michigan and the United States?

A: No. Residents can visit http://statecancerprofiles.cancer.gov/map/map.withimage.php?26&001&001&00&0&1&0&1&6&0#map and compare the rates.