Number 11 Families and Cancer

The plan is for me to write a series of blogs about cancer. You will read this small paragraph every time you read one of these blogs because it is an explanation and a disclaimer. First of all, why should I do this and what qualifies me to do so? The answer to the second question is that I am a cancer immunologist with a PhD from the University of Pennsylvania and have 30-years experience in not only research, but also in the experiences of cancer patients. I have published numerous articles and a book about immunity to cancer and have two other books about my experiences with research and cancer patients as well as a fictional account of the final cure for the disease. However, none of this experience allows me to give advice or otherwise tell people what to do if they have cancer. I can be viewed as a participant/observer who will be relaying current and past observations about this world called “cancer”, which many people do not understand. That’s the answer to the first question, which is why I should do this. The first step in overcoming anything is to understand it first. With that being said, here they are:

Number 11 Families and Cancer

II. Families and Cancer

A. Introduction

The family dynamic or interactive responses between individuals in any given family unit are quite variable during average day-to-day happenings, but in a “crisis situation” that dynamic changes quickly. There is a reorganization of responsibilities, which may lead to some members of the family taking on more responsibilities, and some less. In a situation such as this, the lines of communication between family members is realigned and focused on the situation at hand. When a family member gets diagnosed with a life-threatening disease such as cancer it is a crisis situation that affects every family member. There is not only a change in responsibilities, but also a wide spectrum of emotional responses related to the uncertainty of cancer. This uncertainty concerning cancer has to do with the type of cancer, whether the treatments will work, and if death may be involved. Obviously the above information is complex, variable, stressful, and difficult for a family to manage. How traditional and some non-traditional families deal with a member getting cancer is the subject of this investigation. Initially, there will be a description of the family structures that will be examined in this situation. Next, a brief description of the types of cancers used as examples. The reason for this is that many times the type of cancer that is diagnosed can illicit it’s own unique emotional response and responsibility based on its biologic behavior. Then the consequences of the cancer treatment, which are related to decision-making by the physician, patient and the family, will be examined. This will include an unfortunate consequence of cancer, which is death. This will lead to the ultimate goal of this investigation, which is to identify the contributions of the family to the recent changes in our society concerning cancer. The changes that will be focused on are fund raising events and organizations, cancer support groups, and changes in medical ethics surrounding family involvement such as a patient’s right to die.

B. The family unit and cancer

One simple definition of the family is a group of people, who are affiliated by consanguinity, affinity, or co-residence and another obvious one is the fact that it involves more than one person. Beyond this simplistic view of the family lies a multitude of variations, which are too numerous to delve into for the purposes of this investigation. However, four representative family units will be examined in this situation where one of the members is diagnosed with cancer. There will be one pre-condition and is that the age of the primary couple will not be included in this examination in order to limit the variables of this analysis. The first family unit examined in this setting is the traditional family, which is composed of a married couple with or without children. Next would be single parent households where there are children under the age of 18 who live in households headed by an adult (male or female) without a spouse present. Another common family unit would be co-habiting couple families, which have been an increasing type of family unit in society. Finally, the last family unit examined in this context will be families of lesbians and gay men. These family units are included in this study because they have been recognized by family-oriented literature as viable families and are a significant percentage of family units in society. The various types of cancer (breast, prostate, leukemia, etc.) will be used to examine these family units. In addition, these four family units will be used to examine similar characteristic emotional responses and responsibilities of the members as they relate to a family member with cancer.

The types of cancers examined will represent members of a traditional family, where there is a father (prostate cancer), mother (breast cancer), and children (childhood leukemia). As mentioned previously, each type of cancer engenders somewhat different emotional responses based on the nature or lethality of that particular type of cancer. Most of the emotional responses within the population come from either personal experience with someone who had that type of cancer or from reports in the media. For example how a diagnosis of a particular type of cancer such as pancreatic cancer, is a death sentence for the patient. In terms of strong emotional responses to a type of cancer elicited from not only society, but also the family, childhood leukemia would have to be at the top of the list. Despite the fact that today the 5-year survival rate of the three (AML, ALL, and APL) major types of childhood leukemia is 80%, diagnosis of a child with leukemia elicits a strong emotional response. This is a very difficult disease for a family to cope with because of the unpredictability (uncertainty) of the remission period, which is defined as the minimal residual disease after treatment. Generally, the emotional response of a family to a child who has been diagnosed with leukemia is similar to that family’s response to a natural disaster, which can cause both physical and emotional distress. Breast cancer is the next type of cancer to be highlighted in terms of the family because it affects women, can be deadly, and has a powerful effect on the family dynamic. This again is one of those types of cancers that have affected almost every level of society as far as the other people (family and friends) involved and social awareness of the disease. Prostate cancer is also in this category because it affects men, who in many cases are the main provider for the family. To have this person side-lined by cancer can dramatically change the family dynamic. The emphasis on emotional responses has to do with change. Cancer-induced changes in society are, for the most part, driven by the emotional responses of the patient, their families, and friends and healthcare workers (doctors and nurses). Particular attention will be paid to those emotional responses that have directly influenced change. In this way a true understanding of how cancer has changed our society can be revealed.

C. Families and childhood cancer

Childhood cancer is one of the most emotional cancer-related events known to us as a society. It has had an impact on several very important aspects related to the change in society with regards to cancer. Because of the way these types of cancers affect not only the immediate families, but also the general population, there has been a major effort to solve many of the problems associated with children getting cancer. Two of the major problems have been the type and nature of these cancers and funding to do research to cure them. The major types of cancers children get are brain and nervous system tumors such as neuroblastoma, wilms tumors, bone cancer, lymphoma, retinoblastoma, rhabdomyosarcoma, and leukemia. There are several others, but the one that has had the greatest impact on change is leukemia. Part of the reason why is emotional, but another part has to do with the biology of the disease itself and it’s control of the emotional response. It’s important to understand the facts about leukemia in order to get an idea of the magnitude of change in our society that this disease has caused.

Leukemia is a malignant proliferation of blood leukocytes, usually characterized by leukocytosis (increasing number of white blood cells) and the infiltration of other organs by leukemic cells, ultimately causing death. This is the standard dictionary definition of leukemia, but leukemia is much more than this definition. It’s impact on our society as a form of cancer has been formidable. There are magazines and scientific journals just about leukemia. There are also societies, patient groups, and survivor reunions, all associated with getting leukemia. Leukemia is one of many types of childhood cancers, but it has permeated our society in such a way that sets it apart from all other forms of cancer. There are many reasons for this. For one thing it is a very difficult type of cancer to treat because of its nature. One of the other reasons is that during treatment for leukemia there is a level of anxiety experienced by the childhood patient, their family, and the attending physician that is somewhat different from other cancer treatments. Perhaps it’s the length of treatment or the constant remission/relapse cycles the children and their families go though. Actually, more adults are stricken with leukemia. It accounts for only 30 percent of childhood cancers, but leukemia is the number one cause of cancer deaths for children. However, when the children suffer we suffer.

Technically there are two stages to leukemia. First is the chronic stage where

abnormal white blood cells (leucocytes) can still function and there is a slow onset of the

disease. Many people who are in this stage do not know it because there are no symptoms. The next stage is acute leukemia, where the leukocytes cannot function

normally. In addition, their numbers rapidly increase to the point where they begin to cause spatial problems, which can cause system-wide inflammation. This stage of leukemia can worsen quickly. Symptoms such as fatigue, due to the lack of red blood cells, easy bruising due to low numbers of platelets (that control bleeding), and the recurrence of minor infections because of low numbers of functioning white blood cells, occur rapidly.

Leukemia affects white blood cells in the bone marrow where these cells are born.

The two major types of white blood cells in the bone marrow are the lymphoid (lymphocyte) and the myeloid (myelocyte) types. There is acute/chronic lymphocytic and acute/chronic myelogenous leukemia. There are about 200,000 people living with leukemia and in 2008 there were an estimated 50,000 newly diagnosed cases in the US. As mentioned previously, leukemia is actually diagnosed in more adults than children at a ratio of 10 to 1. There were about 20,000 deaths from leukemia in 2008. The five-year survival rate (cure rate) today, as mentioned above is about 80% up from 15% in the 1960’s. This is due to dramatically improved treatments for this type of cancer. What causes leukemia is not completely understood. It is known that job related exposure to benzene and exposure to ionizing radiation can cause leukemia, but this does not explain the vast number of cases. What is important is that as the number year’s progress so does the cure rate. A contributing factor to this increase in the cure rate is the continuing development of new therapeutic treatments for leukemia (Alexander 2011).

These facts about childhood leukemia are in a way, typical of all childhood cancers. These cancers in children can have a devastating effect on not only the child, as they grow-up, but also the families. There is a vast array of long-term emotional effects for both. The effect on the parents can cause marital instability and sometimes complete disruption of the family unit. This effect occurs in stages. Amazingly enough, the first stage is anger. This is not only experience by the parents, but also the siblings. The parents feel as though they were singled out unfairly to have a child with cancer. The siblings really have a hard time because all of a sudden the attention is draw away from them and directed to the sick brother or sister. The next stage is usually denial, which is similar to how individuals who get diagnosed respond. Grief and then depression follow. The potential loss of a child or sibling intensifies the last two emotional states. This has to do with the “innocence” of childhood and how everyone clings to those memories as adults. One good thing that occurs is that a family unit can be resilient and often can recover from an experience such as this. One of the things that are not readily apparent is that having leukemia as a child and surviving it as an adult, has consequences. Throughout that person’s life there are some lingering medical and psychological effects, which have to be dealt with on a long-term basis.

D. Breast cancer

Breast cancer has had a significant impact on how society views cancer. Aside from the disruptive nature of childhood cancer, breast cancer is second in family disruption. Most of this has to do with the fact that a mother is a central figure in the family unit and usually the emotional anchor. When a life-threatening disease affects this person it affects everyone in the family. Many times the news of the diagnosis is concealed from the children, but eventually everyone in the family is informed. Children, and especially the youngest, have a hard time dealing with the news. A diagnosis of breast cancer can completely split-up the family or make it stronger. It is quite disruptive of the day-to-day functioning of the whole family. However, advances in the treatment of the disease have rendered the diagnosis of it as potentially survivable. Unlike years ago, now a diagnosis of breast cancer does not mean a death sentence. Despite this, a breast cancer diagnosis is a serious and life-altering event that often leads to death.

One of the aspects of breast cancer is that it can be inherited. This is a family issue because there is a family of genes called BRCA that gets passed from mother to daughter. There are several of them and they’re recessive genes, which means that you can have the gene and pass only one copy to your sibling. One copy of this gene is benign, but when there are two copies there is a high likelihood that the recipient will get breast cancer. These genes not only cause breast cancer, but also ovarian cancer. Generally, if a daughter is diagnosed with breast cancer and gets tested for the BRCA gene and is positive, her mother feels as though it was her fault. There is a significant amount of guilt generated in these situations. This is a major issue, but one that has to do with biology, yet it is an emotional event that can fracture families. Another aspect of this genetic component of breast cancer is that often after a woman is tested positive for these genes a decision has to be made about preventative mastectomy. This is a very difficult decision for someone to make, but many times these decisions involve the rest of the family. As a matter of fact families are usually involved with major aspects of breast cancer treatment such as what to do about the diagnosis, treatment, and prevention of recurrence. Breast cancer is another cancer that has had a major impact on society and the way we view cancer because of it’s impact on the family.

E. Prostate cancer

Prostate cancer is another form of cancer that affects families because it is a cancer of men and fathers are involved. It is the leading form of cancer in men and originates in the prostate gland. This gland is about the size of walnut (normally) and is located near the rectum. The prostate gland makes the seminal fluid, which eventually contains the sperm during ejaculation. For an unknown reason, in older men (40-years old), the fluid builds-up, which causes inflammation of prostate cells. Eventually those cells become cancerous. As cancers go, prostate cancer is slow growing. The problem is that there are few symptoms until the cancer has advanced to its later stages and has spread throughout the body. Generally, if a man is in his later 50s or mid-60s and is diagnosed, he’s just as likely to die from natural causes in his 70s or 80s than from the cancer itself. It is not known what causes prostate cancer, but there is a genetic link to it and inherited form of the disease.

The first family aspect to be focused on is how married couples deal with prostate cancer. In many respects this is a difficult issue for a couple to deal with because of this “uncertainty” factor related to almost all cancer diagnosis. It has been found that couples in this situation (prostate cancer diagnosis) use something called “collaborative coping.” This involves the couple pooling their resources and problem solving abilities to deal with problems associated with the cancer. Problems such as incontinence and impotence can be very stressful for a couple, but this coping technique helps both individuals deal with that stress. However there are problems with this situation if the couple’s relationship was tenuous before the diagnosis. Couples have what is called “relational resources”, which is defined as the total reservoir of emotional coping a given couple has. With some couples the disease uses that up and this is where “emotionally focused couple therapy” comes in. It is a way to shrink the emotional load that each individual has to deal with. In addition to this, studies suggest that in order to cope with the disease, couples have to successfully exchanged responsibilities. In this way the couple can maintain control over the disease and their lives. An unfortunate aspect of not only prostate cancer, but also other cancers is what happens to family caregivers when the cancer is in its advanced stages. It’s been found that the caregiver, in this case the spouse, can suffer from both mental and physical fatigue that has to be addressed. Again, many of these issues between couples and prostate cancer can be dealt with in a clinical psychology setting. As mentioned previously, this type of treatment can be just as important as the treatment of the disease itself because cancer affects not only the body, but also the mind.

F. Cancer and single parent families

A lot of the information about this topic has to do with how a single parent deals with a child who has cancer. However, the fact is that just like every other family, the child may have to deal with a parent that’s been diagnosed with the disease. The interactions of individuals in this situation can be more intense than usual because there is not a larger family unit to absorb the significant amount of stress that cancer causes. Large family units can often disperse the stress by having various individuals take turns with the responsibilities related to what happens when there is a cancer diagnosis. They also tend to sequentially address the emotional needs of those involved. However, single parent households are often cut-off from these extended family relationships because of factors such as divorce and relocation. When cancer happens in this small family unit it can have a profound effect on both the parent and child. There is one major benefit to this situation when a child of a single parent gets diagnosed with cancer. This has to do with that same lack of extended family involvement. What happens is that there is a singular focus that is brought about by the lack of distractions from other family members. Single parents are often more emotionally strong than their couple counterparts because of the situation that they’ve found themselves in. In addition to this, there is often a special bond between the parent and child for the very same reasons. Because of the lack of distractions, these parents tend to be able to access information quickly and they can focus on what they have to do as a parent with a child that has cancer. They tend to draw on different resources that are available to them because they are single parents.

This situation does raise some other issues related to time spent by a single parent focusing on being involved with their child who has cancer. In the majority of single parent households the mother is in control. Often she’s a working mother, but now she has to take time off from work to deal with this situation. Unfortunately, women who are absent from work tend to loose their jobs at a disproportionally higher rate than men. However, there is a federal law called the Family Leave Act that allows family members to be absent for 12 weeks and still retain their jobs. The 12-week period is unpaid leave. The bad thing about this law is that it applies to companies with 50 or more employees. This added to the fact that most employment is in the small business sector, a woman in one of these small businesses and with a child that has cancer is still faced with loosing her job. There are resources available to single mothers in this situation that have to do with social services and insurance providers. In addition, there is financial aid from local, state, and federal sources. While all this is going on the child with cancer sometimes feels guilty because they feel that they are a burden on the parent. These feelings were usually in place before the cancer because of the experience, which maybe related to divorce or separation.

Several years ago a survey of literature related to single parents with children who had been diagnosed with cancer was conducted. The authors of the study admitted that there was a paucity of information about the subject, but came to several important conclusions. First, and what was mentioned previously, was the psychological effects on the child in terms of them being even more of a burden on the parent because they had cancer. Secondly, it was pointed out that this is a very stressful situation for the parent. It is so stressful that it can impact the life expectancy of the person, as evidenced by the scientific data related to telomeres and their length. Telomeres are stretches of DNA found at the end of chromosomes and their length is a predictor of life expectancy. Shorter telomeres are indicative of a sorter the life expectancy. It was found that single parents that went through the experience of childhood cancer had significantly shorter telomeres when compared to those single parents that did not. As has been discussed previously in this investigation, the authors of this study recommended psychological evaluations of both the child and parent. The reason for this was that therapeutic treatments could be tailored to address their specific psychological needs based on their individual personality profile.