Emotional Health

After many of the more pressing issues have been resolved, some patients still deal with serious emotional issues during the various treatment phases. Depression, anger, anxiety and frustration often occur with patients as they carry out the long and arduous process. For those patients with a previous history of substance abuse, the impact of the diagnosis may lead to a relapse into addiction as a means of escape. With the frequent need for pain medication that most treatment regimens prescribe, such patients could do more damage to themselves by abusing the drugs that they need to manage their condition.

The emotional aspect of the treatment schedule is almost as important as treating the disease itself. Oncologists, nurses, mental health workers and family members can all participate in this portion of the process. Family members and friends can be observant of the patient’s behavior and watch for any signs of mood changes or alterations in attitude. The patient may be depressed about a lack of progress or frustrated about attending treatment sessions, so the family should do what they can to encourage a positive outlook during this trying time. Health care professionals involved in the treatment routine should also keep an eye on the patient’s emotional barometer. Mental health care specialists can help the patient work through their tumultuous emotional issues and give them the best opportunity to complete their treatment successfully.

Another source of anxiety that patients encounter is the changes in their appearance that often arise from their treatment. Weight loss, hair loss and skin conditions often appear as side effects of radiation treatments and chemotherapy. In the case of breast cancer, patients may require a mastectomy (removal of the breast tissue). These alterations can significantly affect the patient’s self-esteem and self-image; the patient may not feel as attractive, young or vital as they did pre-diagnosis.

Many hospitals and specialty stores carry wigs, makeup and prosthetics to help patients deal with the changes in their appearance. Some cancer patients use these changes as an opportunity to experiment with their self-image. A patient that started treatment with long, blond hair, for example, may want to try a brunette bob wig. Another may use different shades of foundation and lipstick for a new look. Such activities can serve as a distraction from the more painful effects of treatment and allow the patient to forget about their condition for a brief moment.

Financial Issues

Another major concern for cancer patients is the expense involved in treatment.  Chemotherapy drugs, radiation therapy and prescription medications, while all proven to be effective, are far from affordable for most patients.  Blood tests, biopsies and office visits add to the cost.  Not only do treatment schedules themselves carry a high price tag, many patients must miss work due to doctor’s visits and medical side effects in addition to the weakness brought on by the illness itself.  For those patients with employer-paid health insurance benefits, some of the treatment costs may still not be covered by their respective policies.  For those without health insurance, the financial burden may be too much to overcome.

Many avenues are open for patients who may be overcome by rising medical bills.  Federal and state government programs such as Medicare and Medicaid offer coverage to eligible applicants.  The Veterans Administration has several programs available to those who have served in uniform.  Non-profit organizations such as CancerCare and the Patient Advocate Foundation can provide information on how to obtain financial aid for cancer treatments.

One avenue that many patients use to soften the financial impact of treatment is to participate in clinical trials.  Most cancer research facilities and pharmaceutical firms conduct clinical trials to judge the efficacy of new cancer treatments.  After they have successfully completed the animal testing stage, they look for human volunteers to test out their new therapies.  Patients incur no costs during these trails and receive careful supervision from the trial administrators and physicians during the course of the experiment.

For those patients concerned about cost issues during treatment, some questions that the American Society of Clinical Oncology recommends to ask are:

  • Will the person in charge of billing for services help me work with my health insurance company/provider?
  • If I need multiple visits to a doctor’s office, is there a policy where I can pay the co-pay only once or not at all (called a waiver)?
  • Are there ways to change my treatment schedule, if necessary, to work around my job or child care?
  • What expenses will I have if I join a clinical trial?
  • For medications for side effects, is there an over-the-counter medicine that has the same effect as the prescribed drug? Is it less expensive?
  • Is there free or low-cost transportation for patients at the medical center where I will have treatment?
  • If I have trouble paying for basic items, like food or heat, due to the cost of my cancer treatment, are there organizations that can help me?
  • Should I plan financially for long-term medical care, such as a nursing home or hospice care?
  • Where can I find out if my medical and related expenses can be deducted from federal income taxes?

Patients can find a comprehensive list of questions at Cancer.Net.

Another task that comes with managing the financial portion of treatment is dealing with the paperwork and bureaucracy involved in the process.  Hospital bills, insurance claims and other forms that require the patient’s attention can take away the vital energy that they need during treatment.  Financial professionals such as CPAs can help navigate through the red tape, pay household bills and keep everything on budget.  They can also help with finding out which treatment costs are tax-deductible and where to locate additional funding for treatment.

Surgery and Hospital Care

Many cancer cases require surgery to remove portions of the tumor.  In instances of more advanced or aggressive forms of the disease, the affected organ may also need to be removed in whole or in part (e.g. mastectomy in breast cancer cases, excision of an affected testicle).  The removal of affected tissue and the potential loss of the functionality of the organ can have a severe effect on the patient’s outlook.  In their minds, they have literally lost a part of themselves.  Also, the physical scarring, the extended hospital stays and additional tests that are part of the surgical process can have a negative impact on the patient’s emotional state. 

One study published in the Journal of Surgical Oncology reveals what some experts consider an unexpected result: 

“Although often acknowledged, the impact of the surgical treatment of cancer on the spouse of the adult cancer patient is a largely unexplored area…The results (of the study) indicated that at both the presurgical and postsurgical period, spouses were exhibiting significantly greater distress than patients. Surprisingly, spouses’ levels of distress remained fairly constant across the presurgery to postsurgery period, while the patients distress decreased…Spouses of cancer patients undergoing surgical treatment appear to be an underacknowledged population at risk.” 

Before surgery, patients and their families are best served by educating themselves on the specific procedure as well as a time frame for recovery.  After the procedure, patients can learn more about what limitations they will have and how long such restrictions will be in place.  Family and friends can make the patient as comfortable as possible during both the inpatient and outpatient phases of surgical recovery.     

Internet Research and Telling the Family

Of course, many patients will begin their search for more information via the Internet.  Most hospitals, research clinics and treatment providers offer news and resources through their web sites.  Also, organizations such as the American Cancer Society and the National Cancer Institute give visitors access to a wealth of information on how to manage the various aspects of their treatment.   

One aspect of Internet research of which patients should be aware is the prevalence of misinformation, lies and outright scams that some unscrupulous people can perpetrate on someone desperate for a “miracle cure”.  Many websites that promote themselves as resources for cancer patients often contain misleading information, either as a result of incomplete or inaccurate research or as an attempt to sell their product.  These books, pills and diet plans, in the best cases, are as effective as placebos or, in the worst instances, can cause great harm to a cancer patient’s sensitive metabolism. 

Telling the Family 

After patients receive their diagnosis and their treatment information, the next step often involves telling their spouses and families.  For many patients, this step may be as emotionally difficult as when they first heard the news themselves.  Spouses may often feel the same sense of helplessness as patients; they may feel that this disease will take away their partner and that they can do nothing to stop it.  Young children may not entirely comprehend all of the physical ramifications of what could happen to their parent, but they will pick up on the emotional distress and become depressed, sad or angry.   

Most experts agree that the best way to combat these feelings is to keep the lines of communication open throughout the treatment schedule.  The patient should answer any questions, especially from younger children, as openly and honestly as possible.  One of the best ways to combat the feelings of helplessness that family members may experience is to include them in the therapeutic process.  Simple actions, such as organizing task lists and completing simple chores, can both alleviate the mental stress and add to the family’s feelings of contribution to the patient’s well being.   

The patient’s relationship with their spouse will undergo many of the more serious changes during treatment.  The patient may experience both physical and mental exhaustion during this time, so the spouse may have to take care of their normal household duties (taking out the trash, cooking dinner, dressing the children for school).  In addition, the nature of the couple’s physical relationship will also change.  Along with the lack of energy, the patient may have either lost their desire for sex or may be physically unable to perform.  These changes could cause resentment and anger to disrupt the relationship and add more stress onto their situation.  The spouse may then feel a measure of guilt for harboring these feelings against their ill partner.

Many psychologists, counselors and mental health professionals specialize in therapy for cancer patients and their families.  Even with the technology available to modern medicine, the idea of cancer is still very traumatic for both the patient and their loved ones.  These specialists can offer outlets for all the members of the family affected by the disease, the treatment and the consequences.  With the opportunities to alleviate much of the emotional stress caused by the illness, the patient and the family can focus on the other aspects of cancer therapy and potential recovery. 

Fertility or reproductive health may be an issue with patients and their spouses during treatment, especially if the reproductive organs are the ones affected by the cancer.  Doctors can give information on potential risks and outline options for couples that still hope to have children either during or after treatment.  Some techniques include protection of the reproductive organs during radiation treatment, tissue preservation of the organs for later reimplantation, hormone therapy and sperm/egg banking. 

Coping with Cancer

“You have cancer.”

No patient is ever prepared to hear these words from their doctor. The diagnosis can lead the patient to feel overwhelmed with anxieties, worries and fear. In years past, these words were the equivalent of a death sentence. However, with numerous advances in detection, drugs and other treatment options, many patients can experience a full life while undergoing therapy for the disease. While modern technology has helped in the treatment of many forms of cancer, the road to recovery is still long, often painful and very expensive. During this process, patients will encounter many serious issues that reach beyond the oncologist’s office and into every facet of their lives.

Knowledge Is Power

One of the best ways the patient can deal with the emotional shock of the initial diagnosis is to ask as many questions as possible. Patients should understand that they are the most important participants in their own recovery process. Doctors should encourage questions from patients and allow them to take an active role during the course of the treatment schedule. According to the American Society of Clinical Oncology, some of these questions should include:

  • What is the exact type and name of the cancer I have?
  • How was it diagnosed?
  • What tests were taken and what did they show?
  • Will I need additional tests?
  • What stage is the cancer and what does that mean?
  • What are my treatment options?
  • What clinical trials are open to me?
  • What are the possible side effects of this treatment option, both in the short term and the long term?
  • What is my prognosis? What will my quality of life be?
  • What are the next steps?

Such a frank exchange of information will help patients take control of their emotions and give them a course of action to follow, rather than allow them to be carried away by feelings of helplessness and despair. Doctors also benefit from these sessions; the more feedback they receive from the patient, the better they can tailor the treatment regimen to that specific patient’s needs.

Some patients may also be well served in obtaining a second opinion on their diagnosis. In many cases, doctors may recommend that patients see other specialists in order to gather more information on the specific form of cancer as well as to learn about the latest data on other treatment options. Patients may also benefit from the perspective of another professional opinion and incorporate that into their approach during the healing process.

 

Summary of Cancer Clusters

Cancer clusters are not common in the United States and determining the existence of such a cluster is extremely difficult. The vast array of cancers coupled with the large quantity of new cases, make cancer a very common disease.

The significance of cancer clusters should not be dismissed however there are very few proven cases in medical history. The most important information for individuals regarding cancer is healthy living, early detection and cancer screenings.

Taking the time to know and understand the controllable risk factors for cancer can help individuals prevent the disease in their lifetime.

http://www.cancer.org/docroot/PED/content/PED_1_3x_Cancer_Clusters.asp?sitearea=PED

http://www.cdc.gov/nceh/clusters/

http://www.cancer.gov/cancertopics/factsheet/risk/clusters

http://training.seer.cancer.gov/module_cancer_disease/unit5_war_on_cancer.html

http://www.reuters.com/article/healthNews/idUSTRE53E71N20090415?feedType=RSS&feedName=healthNews

http://imsdd.meb.uni-bonn.de/cancernet/600358.html

Cancer Cluster Reporting

Each year approximately 1,000 cases of possible cancer clusters are reported.  Of these cases only 5% to 15% are investigated after the initial report.  The bulk of the cases are clearly not cancer clusters and researchers can eliminate the possibility with just a bit of research.

Out of the 5% to 15% of cases that are investigated most are still definitively classified as cancer clusters.  Epidemiologists are rarely able to provide definitive answers however a set of specific questions helps guide the initial investigation.  The following questions from the Cancer Council of New South Wales are similar to those utilized by many local and state health organizations and include:

  • Have all the cases been identified? 
  • Are all the cases of the same (or similar) type? 
  • Are both sexes affected? (If environmental factors, such as chemical contamination or radiation leakage, are suspected to be a cause then a rise in cancer amongst both sexes would be expected.) 
  • Is there statistical evidence to suggest that the number of cases exceeds what would be expected in this population? 
  • Do the cancer types have a known common cause, whether occupational or non-occupational? 
  • Did the persons diagnosed with cancer have a common occupational (or non-occupational) exposure? 
  • Are there known workplace exposures that could have contributed to the occurrence of the cancers? 
  • Did the cancers occur at an appropriate time in relation to the possible workplace exposures? (Some cancers can take many years to develop.) 
  • On the balance of probabilities, is it likely that the identified cancers occurred as a result of occupational exposures? 
  • Are there any plausible non-occupational causes for the apparent cluster? 

Many epidemiologists feel that identifying cancer clusters is so difficult because of the lack of accurate cancer reporting from state to state.  Although the federal department of the Center for Disease Control (CDC) controls the cancer data registry this department must rely on the information provided by each state.  Each state may have different reporting systems making collecting and compiling accurate information difficult.

Further complicating the process is the lack of information on the local and state level regarding environmental risk factors and the existence of possible carcinogens.  Some local governments collect insufficient information and some don’t collect any information at all. 

In recent years there have been investigations of nuclear facilities, hazardous dumping grounds, schools, offices and power lines.  None of these investigations have provided proof that carcinogens exist in the environment nor have they provided definitive evidence of cancer clusters.  Individuals in areas surrounding these sites have reported cancer clusters, however the rates are in line with the expected rate of cancer in these areas.    

 

Many states have a central registry of cancer statistics for the state.  This data often includes the number of newly reported cancer cases as well as death rates due to cancer.  Epidemiologists use this data to compare expected cancer rates to the actual reported rates.  This information helps in the initial decision when investigating a cancer cluster. 

Some of the most common reports of cancer clusters come from individuals who suspect occupational exposure to carcinogens.  This information is often directed to the National Institute for Occupational Safety and Health (NIOSH).  NIOSH will investigate occupational hazards and assist with determining if a cancer cluster does exist.   

Cases of Cancer Clusters

A well-known cancer cluster was discovered in the 1960s and continues to be studied today. The use of asbestos, a naturally occurring mineral, was prevalent in factories, shipyards and building products throughout the 1950s and 1960s. Many individuals who were exposed to asbestos on the job developed a disease known as mesothelioma. Many individuals also developed lung cancer. These diseases were directly linked to asbestos exposure and this exposure is still the largest known cause of mesothelioma in the world today.

Between 1941 and 1971 many women were exposed to a drug called diethylstilbestrol (DES). This synthetic hormone was prescribed for women to prevent miscarriage. It was also used to prevent breast engorgement during pregnancy. Over 10 million women were exposed to the hormone and the cancer cluster was discovered after many daughters developed vaginal clear cell carcinoma. This rare cancer is directly linked to exposure in the womb to DES. It is the largest known cause of vaginal clear cell carcinoma.

These two cases are examples of cancer clusters in very specific situations with clear-cut exposures and development of very rare forms of cancer. Other historical cases include the development of leukemia and lymphoma in chemical workers who were exposed to the chemical benzene, dye workers exposed to aniline compounds who developed bladder cancer and farmers who developed skin cancer after extreme exposure to the sun.

Cancer is not the only disease that can sometimes occur in clusters. Other disease clusters have also helped to identify environmental hazards like bacteria contaminated foods, and a respiratory illness now known as SARS. Epidemiologists study these types of environmental factors as well as those known to cause cancer.

Heredity and Environment in Relationship to Cancer Clusters

Heredity and environment are the main contributing factors to the development of cancer. Epidemiologists focus on these two areas when studying cancer clusters. Behavior and lifestyle also contribute to cancer risks so they are also included when studying environment.

To establish a connection between an environmental risk factor and a genetic predisposition is difficult. Scientists must study large groups of people over the course of a long period of time to understand the process of carcinogenesis (the process of normal cells becoming cancer cells). This makes establishing the existence of cancer clusters a lengthy process.

The exposure to certain carcinogenics may also not affect health for many years. In the case of asbestos exposure, it often takes decades for mesothelioma to develop after exposure to the substance. Therefore, the cancer cluster was not identified until many years after the initial exposure began.

Heredity

Researchers have made some discoveries in regards to heredity and cancer. They have determined that all cancers are caused by some form of gene mutation, which causes the gene to perform abnormally.

Some of these abnormalities are present in an individual at birth. These types of gene mutations are passed down from parent to child. Although this is an uncommon source of cancer it does create “inherited susceptibility” or a predisposition to cancer. Inherited susceptibility does not mean cancer will definitely occur in an individual, however it does indicate a condition where, if other exposures and factors exist, cancer may occur.

Cancer clusters can often be suspected within families due to a higher than expected rate of disease within the family. These cases can sometimes be attributed solely to coincidence. Other times these “familial clusters” can be due to inherited susceptibility coupled with environmental factors.

Somatic alterations are changes that occur to genes throughout an individuals lifetime. These alterations are more likely than inherited susceptibility to be the cause of cancer.

Environment

Environmental exposures have often been suspected by individuals to be the cause of cancer clusters. The environmental factors that are considered by epidemiologists include the air, water and earth surrounding an individual or group. Other environmental factors that influence cancer clusters are home and workplace conditions, tobacco use, drugs and alcohol, chemical exposures, and exposure to radiation or even sunlight.

Due to varying susceptibility in individuals and the vast array of chemical and other substances in our world identifying specific causes of cancer is extremely difficult.

Workplace discoveries in regards to chemical exposures have provided positive results in the study of dangerous exposures to certain substances. Certain occupational studies have proved the toxicity of chemical carcinogens and led researchers to develop ways of reducing exposure.

Causes of Cancer Clusters

There are many risk factors for cancer in the world today. Smoking, poor diet, lack of exercise and inactivity are some of the preventable cancer risks. Carcinogens in the environment can also cause cancer. Cancer clusters, once identified as such, often may not have an underlying cause.

There are often several explanations when considering cancer clusters including coincidence, external behaviors (smoking) and miscalculation of historic incidences. When these factors do not explain the cancer cluster, a deeper, more thorough study can be conducted. These often take many years and do not always provide a clear and definitive answer.

Epidemiology and Cancer Clusters

Epidemiology is the study of the factors that cause illnesses and disease with in a population. This field of study is critical in the prevention and spread of communicable and non-communicable disease. Epidemiology is used to identify disease from the outbreak through diagnosis and treatment.

Epidemiolgists, those scientists who study the causes of disease, utilize knowledge in biology, sociology and philosophy in an effort to understand and communicate risk factors for disease.

Carcinogenesis, or the process by which normal cells become cancer cells, is studied by epidemiologists to determine the existence of cancer clusters.

Cancer clusters are rare and epidemiologists determine, through specific criteria if and when a cancer cluster exists. Many individuals will report a cancer cluster but it is the job of an epidemiologist to determine if there is an environmental cause for the incidence of cancer or if the high rate of cancer is merely coincidence.

An epidemiologist will utilize several specific criteria to decide if further investigation is necessary in regards to a cancer cluster. When one type of cancer is found in a population in large numbers this may be a warning sign of a cancer cluster. There are over 100 varieties of the disease so it is rare for one, specific type to be found in large numbers in a population.

There are rare forms of cancer and there are more common forms of the disease. If a rare form of cancer is found in high numbers within a community or group this may also signify a cancer cluster.

A third warning sign to the existence of a possible cancer cluster is when a specific age group in an area suffers from a form of cancer that does not usually affect that age group.

In the beginning stages of determining the existence of a cancer cluster, epidemiologists must first assess the health of the individuals affected. If the cancer is a result of an underlying infection or due to the spread of cancer from another area of the body, this individual is not part of a cancer cluster. The primary cancer is the only cancer considered in the study of a cancer cluster.

Epidemiologists will use biological knowledge to study the significance and causes of the particular type of cancer. The scientist will use knowledge of biological causes of disease to determine if exposure to environmental factors has the ability to cause the specific type of cancer.

In the process of deciding whether or not a cancer cluster truly exists it is important for the epidemiologist to define the borders of the geographical area. Often there are cases in outlying areas causing additional individuals to become involved in the study. These situations may create false cancer clusters.

It is very difficult to determine with absolute certainty if the number of cancer cases is higher that what would be normally expected. The use of statistical factors such as age, gender and race are utilized but lifestyle factors may cause the numbers to be different than what would normally be expected.

It is not possible in all cases to make a determination that a cancer cluster does exist. In some situations the cases of cancer are higher than what would normally be expected within the geographical area in the specified time period, however the epidemiologists cannot find an underlying cause for the disease.

In some situations the study of a cancer cluster cannot be completed due to the small amount of subject cases. The epidemiologist must have enough cases of the disease to provide accurate conclusions.

Even in situations when there are many cases, the history of the individuals involved may make specific determinations regarding exposure impossible. For example, an individual may have lived in many areas over the course of a lifetime and determining when and where exposure occurred would then be impossible.