Number 12 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 12 Families and Cancer

II. Families and Cancer

G. Unmarried couples and cancer

There is a definite paucity of information about couples that are not married and are involved with one of the partners having cancer. Long-term couples that are not married tend to behave as married couples, but don’t have the same legal rights as married couples until seven years have passed. This is the case in many States in the US. Despite this, they still suffer the same fate as married couples and either one of them can be diagnosed with cancer. The emotional responses can be slightly different when compared to married couples and this has to do with the bond the partners have in their relationship. For instance it was found, when studying heterosexual partners where the male partner had prostate cancer, that the mental aspect of the couple, but not the physical aspect, determined the quality of life of the patient (Bergelt 2008). This is very similar to married couples where the spouse has breast cancer and it’s the support and recognition of the disease by the partner that improves the survival of the patient. Furthermore, daily contact between the couple was the most important factor in this improvement of survival and increased quality of life (Belcher 2011). As a matter of fact the mental attitude of the partner who doesn’t have cancer is a determining factor in how that patient survives the disease. If the partner decides to ignore the other’s serious health problem (cancer) then the patient’s outlook on their ability to survive is diminished. This fact spans all types of cancer when couples are involved. Here, the idea is to get not only the cancer patient to participate in a psychologically based analytical program, but also the partner of that person because the patient’s well being and quality of life during the experience depends on the bond the patient has with their significant other (Gustavsson-Lilius 2007).

This situation between unmarried couples and cancer, as mentioned previously, can be just as difficult a situation that married couples face. The mental aspect of how the non-cancer partner has to be involved with the plight of their significant other is important, but the non-cancer partner can develop serious psychological issues during the period where their partner is being treated for cancer. As mentioned previously with prostate cancer, couples have difficulties associated with the treatment period of the disease. Incontinence and loss of sexual function are the major problems that occur during and after prostate cancer treatment. Just these two problems can cause both emotional and social distress for the unaffected partner. The main reason is that they are “private” issues that often come to light in the social sphere of friends and family. Until recently, it was thought that each partner equally shared this psychological distress. However, studies revealed that it was more stressful for the unaffected partner (woman) than the patient. It was shown that this distress experienced by the woman could be lessened by a willingness to help her partner by seeking psychological counseling in order to understand why she is experiencing so much distress (Couper 2006).

In many respects the treatment for prostate cancer is similar to those associated with ovarian and breast cancer in terms of the psychological impact on the patient. All three of the treatments for these cancers may alter the “body image” of the patient and for this reason they can cause personal turmoil that affects their partner. One particular case, which was written about in a popular magazine, that turmoil was averted by a new type of prostate cancer treatment and it started when a woman’s fiancée was diagnosed with prostate cancer. Initially the woman was concerned with the results of the primary treatment for the disease, which is surgery that can cause the previously mentioned problems of sexual dysfunction and incontinence. However, they were able to have available to them another kind of treatment that uses focused radiation, which can kill the cancer cells. It was clear in this case that the female partner’s optimism and willingness to find other alternatives to surgery made a major difference in the outcome of the treatment. In this case, the psychological distress associated with an altered body image was avoided (Eberhardt 2005). Often what happens in these cases where there is an unmarried couple going through this experience, the unaffected partner may distance themselves from involvement with the patients treatment problems. This severely limits the willingness of the patient to not only seek life-saving information, but also to have a positive attitude. A positive attitude (discussed in the Individual and Cancer section of this report) is an essential ingredient in maintaining a high quality of life before, during, and after cancer treatment, as well as maintaining good health in general (Bruckbauer 1993). Despite the fact that this group is not bound by the legalities of formal marriage, unmarried couples are susceptible to not only the same types of cancers as other family units, but also suffer from similar psychological difficulties brought about by having the disease.

H. Gay and lesbian families and cancer

To a certain extent this is the most unique family unit that will be examined in this investigation of families and cancer. Many of these couples, which will be discussed in this section neither have children, nor are legally married. This is due to the social stigmas associated with homosexuality. Regardless of that, they pass the definitions of family as defined in the introduction of this section and will be considered as such. The fact is that they, like the rest of humanity, suffer from cancer. The types of cancer sometimes are specific for their lifestyle, but many times typical of the general population. Because of the social factors that affect their lives, a cancer diagnosis may be viewed in a different light with these couples. There is another issue concerning the healthcare of gay and lesbian individuals. This has to do with the responses they get from healthcare workers. This issue is important as far as cancer is concerned because early detection is dependent on cancer screening. If an individual has a problem making routine doctor visits, some cancers may go undetected and when they are found, it’s too late for successful treatment. There is evidence of blatant discrimination in healthcare systems against Gay and lesbian individuals, which are not commonplace occurrences, but exist nonetheless (Kendall-Raynor 2007). However, what is more prevalent is a negative emotional response directed towards them by doctors and nurses that the have to see on a routine basis (Saulnier 2002). So to some extent this “discrimination factor” is a major problem when it comes to the incidence of cancer in gay and lesbian individuals. This is the backdrop of any discussion of cancer and gay and lesbian couples. It is an emotional issue that needs to be addressed because they represent a major percentage of our society.

One of the encouraging aspects of this situation is that healthcare treatment of gays and lesbians is improving because of acceptance and recognition of not only homosexuality in general, but the lifestyle of gay and lesbian couples. Within the healthcare system itself, there are indications that when a gay or lesbian couple seeks cancer treatment for one of the partners the reactions of healthcare workers has been described as almost “gay neutral.” Despite the fact that this response is not “gay acceptance” response it is a good thing for these couples who have to deal with one of them having cancer. However, there is a problem with support groups. In this situation the majority of participants are heterosexuals who are from the general population that have issues related to cancer that are dealt with in this type of group therapy. Often what happens is that these couples are exposed to the same homophobic attitudes, which were encountered in the outside world. This is in contrast to the healthcare system, which actually has to conform to some type of acceptance of gay and lesbian couples for legal reasons. These couples, if they go to these meetings, leave out the fact that they are partners and often portray themselves as just “friends.” Sometimes, if they admit they are a couple they only attend one meeting and then stop. This is a major problem for gay and lesbian couples because group therapy can alleviate the stress of cancer these couples encounter and without it, the quality of live and potential survival of the patient is diminished. Another aspect of gay and lesbian couples experiencing cancer is a sexual one. To a certain extent, sexual organs such as the breast and penis are viewed differently in homosexual couples versus heterosexual couples. Homosexual relationships tend to be more dependent on sex than heterosexual relationships are. Therefore, the loss of a breast or dysfunction of a penis is more of an emotional crisis for homosexual couples. This fact is almost completely unknown by heterosexual healthcare workers such as doctors and nurses (Katz 2009).

Most of the information about homosexual couples and cancer is focused on prostate cancer. There are a combination of problems associated with gay men and prostate cancer. First of all in the general population there is a tendency to not talk about prostate cancer. The second part of this has to do with the fact that the heterosexual society avoids talking about gay men. So therefore because of this “silence” many gay men do not submit to prostate cancer screening. After diagnosis, many of these men slip into deep depression, which is associated with the fact that they have to enter a healthcare system that is not always ready to deal with gay men. Other factors such as those mentioned above about sexual organs and the sexual dysfunctions, which were talked about in the Prostate cancer section, may contribute to this depression that many gay men experience after diagnosis. Often the partner of the patient is at a loss at what to do to help him. Again, Psychological counseling, specific for gay couples can alleviate the emotional problems associated with this situation (Pearlman 2005). As mentioned above, sexual functioning and the organs that facilitate it are viewed in a different light for homosexuals. Prostatectomy removes the entire prostate gland containing the tumor, but as a result of that the man who experiences this often cannot ejaculate. For heterosexual couples this may not be a problem because the man can still satisfy his female partner with an erect penis. However, the erection and ejaculation is important for gay men and sometimes neither can be achieved after surgery. This is a major psychological dilemma for these patients because it impacts their lives on may different levels. After prostatectomy a man has to become reacquainted with his “new sexual body”, where an orgasm is possible without an erection or ejaculation. There is a tendency for these men to feel as though they were not only cursed, but also victims of a vicious disease called prostate cancer (Martinez 2005).

The subject of cancer in gays and lesbians is a complex one as evidenced from the information above. Despite the fact that gays and lesbians make up 40% (~20 of males and 20% of females) of our population, general and specific information about what occurs during the “cancer process”, such as diagnosis, treatment, psychological effects, medical effects, and quality of life is limited. It is very difficult for healthcare professionals to gather this information in order to give their gay and lesbian cancer patients the best care. Several studies have been done to determine exactly how much of this information is available and why. One of these studies examined information related to lesbians and cancer. The first thing they noticed was that there was a large disparity in not only the amount of information, but also its quality when compared to the heterosexual female cancer patient population. For instance there was information about lesbians and cancer screening/prevention, breast cancer, and cervical cancer, but very little information about other cancers. In addition, there was almost no information lesbian cancer incidence, etiology, diagnosis, treatment, survival, morbidity, or mortality (Brown 2008).

The lack of this information, which should be available to healthcare workers who treat gay and lesbian cancer patients, may lead to patients to receiving inadequate or inappropriate treatment. It appears that gay and lesbian cancer patients are not considered when it comes to compiling information for cancer surveillance programs. The reasons for this more than likely have to do with the slowly changing attitude that society has about homosexuality in general. In support of how valuable the above information is to the health and well being of gay and lesbian cancer patients, recent studies have revealed that there is a vast difference in not only cancer survival, but also the quality of life in these patients. Recent information concerning the fact that gay men have a higher rate of cancer as compared to their straight male counterparts is useful because it should lead to increased cancer screening (Boehmer 2011). Again this is an important issue that has to be rectified because it not only negatively affects these patients and their partners, but also the patient’s parental heterosexual family. Often, but not always, parents and heterosexual friends put aside their differences and offer support to these patients. However because of inadequate care brought about by the lack of information about homosexuals and cancer, these families and friends end-up suffering as well as the patient from psychological distress, poor quality of life, and premature cancer death. There are particular treatments and techniques available to alleviate the suffering in this particular situation, but first they have to be tailored to the gay and lesbian cancer patient and then made available to them in a non-bias way. Unfortunately, the information that was mentioned above that would allow these treatments to be effective in gay and lesbian cancer is sparse and unavailable to be used to help these patients. Because gays and lesbians make-up 40 percent of the population they are one of the largest minority groups in the country. It is difficult to believe that proper cancer statistics do not exist for such a large percentage of our society. This is another area where cancer is changing society because of its ever increasing recognition of the fact that gay and lesbian patients should have cancer care treatments that are just as effective as they are for the rest of society.

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.

Number 10 Cancer Treatment

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 10 Cancer Treatment

M. Cancer treatment

The nature of cancer treatments, to a certain extent, has evolved over the last 30 years. However there are some lingering problems such as general toxicity and the use of chemotherapy as a shotgun. That last statement refers to using compounds that inhibit rapid cell growth, which includes rapidly dividing normal cell. Early treatments for cancer used chemical agents (chemotherapy) to retard the rapid growth of cancer cells. Scientists who identified the fact that cancer cells have a higher metabolism than normal cells developed these chemical treatments. Cancer cells take in more nutrients and substances at a higher rate than their normal counterparts. Scientists also found that if they administered low doses of a toxic chemical, the tumor cell would absorb more of it and die. But prolonged exposure to these chemical agents produced harmful side effects. One immediate effect of this type of chemo use is hair loss. Because the cells within hair follicles have a high metabolism these drugs target them. Despite this, their use has been successful in treating many malignant cancers. Anti-cancer drugs have a long history that go back as far as the 1930’s where Yale researchers became interested because of the effects of mustard gas in an accident. Apparently the victims of this accident were completely devoid of an immune system and had vastly lower numbers of white blood cells. The gas had eliminated the lymphatic system, which contain these rapidly dividing cells. The scientists got the idea to use an injectable form of the active compound because of a type of cancer called, lymphoma (white blood cell cancer), which at that time was deadly. These patients made a remarkable, but transient recovery.

One agent used in early treatments was called Mitomycin-C. It was a by-product of a certain type of bacterium and later made in the lab. It has the ability to cross-link the DNA chains. The cell is unable to divide because the separation of DNA is an essential component of cell division (mitosis).

In early studies, the doses were too high and sometimes led to the death of the patient. When the chemical is dissolved it displays a deep blue color. In the initial trials, it was clandestinely termed “The Blue Death” after a rat poison. Extensive clinical trials have proven that at the proper dose and rate it is effective against esophageal cancer, breast cancer, and bladder tumors. It also is used in the laboratory so that scientists (mostly tumor immunologists) can study immune T cell responses to tumor cells. Since the tumor cells cannot divide after Mitomycin-C treatment, the only measurable cell division comes from the stimulation of T cell nuclear replication and cell division induced by the inactivated tumor cells.

The evolution of Mitomycin-C from toxic chemical to a useful chemotherapeutic agent took years. Today, chemical agents used for cancer therapy are designed to attack specific tumor cell products that are unique to the tumor, which can lead to the death of only the cancer cell. This type of chemical therapy reduces the side effects normally associated with use of broad-spectrum chemical agents. Broad-spectrum agents would

often weaken or severely deplete the very cells (immune cells) in the body capable of removing the cancer cells. Broad-spectrum chemotherapeutic agents, including the ones mentioned above, are toxic to the body to one degree or another. The problem is the age of the patient. Two patients with the same cancer diagnosis but 35 years apart in age may get different modes of treatment or different doses of the same chemical. The younger

patient (say, 20 years old) can withstand a higher dose for a longer period of time than the older patient (55 years old). Therefore, the prognosis (possible outcome) of the same type of cancer can be better for a younger person. This is simple physiology, but there are exceptions and in some cases completely opposite results. This is the nature of chemotherapeutic treatment. Scientists are now recognizing that the response of a tumor to chemotherapy is related to the genetic make-up of the patient. Scientists noticed that patients with the same type of cancer who responded positively to a given agent had identical genetic markers. So, in a new approach they could design these drugs around the genetic make-up of the patient. This is an ever-changing field of scientific research, which will be joined by a newer type of cancer treatment called immunotherapy.

So what is immune-based therapy (immunotherapy) for the treatment of cancer and how did it start? This type of treatment began in the mid-1970 while scientists were studying a mouse tumor model. The tumor was blood-born and usually lethal, but they found an active immune response to the tumor. The tumor cells were grown in the lab. Once the cells were inactivated (using Mitomycin-C) they were cultured with normal mouse lymphocytes (T cells) over a series of days in a temperature and gas controlled incubator. After this culture period it was found that the T cells had become immune to the tumor with the ability to kill them. Subsequently, massive amounts of these T cells were produced. Mice were given an inoculation of small numbers of live tumor cells followed by an injection of tumor-immune T cells. Under controlled conditions it was discovered that the mice that received the immune T cells survived much longer than those that did not. This technique was called “adoptive transfer.” This ushered in an entirely new approach to treating cancer. Recent advances in genetic transfer have allowed scientist to genetically engineer T cells to make them recognize the tumor. This means that normal T cells can be removed from the body, genetically altered, and then returned to the circulation to fight the tumor. This technique is used in conjunction with natural immune-stimulating proteins such as lymphokines. This is how the natural processes of the immune system can be manipulated to fight previously lethal cancers described in a very simplistic manner.

Number 9 Cancer Communnication and Ethics

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 9 Cancer Communications and Ethics

During the communication period between a cancer patient and their physician there often arises several ethical issues concerned with areas associated with cancer treatment (informed consent, treatment options, and clinical trials), long-term care (hospice), and the right to die (do not resuscitate). These ethical issues tend to become increasingly complex as the patients disease progresses. Family involvement with the process at these times is very important. Ethics come into play very early in the process of diagnosis. There are two very sensitive areas where physicians have to use their communication skills to allow the patient to not only understand what’s happening, but also prepare them for what’s to come as far as their cancer is concerned. The initial ethical even is telling the patient that they have cancer, which is really “bad news”. This would seem simplistic, but its not. Telling a person that he or she has cancer it a life-changing event and the way this information is given is very important. There have to be reassurances that the problem can be dealt with so that the treatment will not totally disrupt the person’s life. These reassurances are very important because of the potential devastating psychological effect of the information. Recently there has been an effort to train physicians to deliver this news in a more respectful manner. Full disclosure is the other area where ethics come into play. Again, it wouldn’t seem like telling the complete truth to a patient about their diagnosis is an ethical issue, but it is. In many counties (Japan, Russia, Eastern Europe, and China) the physicians do not tell their patients they have cancer. This has to do with cultural tendencies. These cultures are very sensitive to the psychological well being of potential cancer patients. As a result of this social component often a physician will tell a patient that they are suffering from a less serious disease such as gallstones or a blood disorder when in fact the patient has cancer. The problem here is that Western physicians are not completely prepared to give such “bad news” to patients that originate from the counties mentioned above. This is an ethical problem because it certainly is wrong to not tell a person that they have cancer, but the fact is that in doing so there may be irreparable psychological harm to the patient.

The right to die is another issue where ethical issues come into play. This has to do with informed consent. Patients at times are required to sign documents that give their physicians the legal rights to not only administer treatments, but also give them the authority to decide when the patient should not be put on life support. The real ethical issue here is the “do not resuscitate” form or DNR. Once the patient signs this document, the physician can, at his or her discretion, allow the patient to die without the use of life-support or further treatments. However, many patients decide not to sign and there is a conflict. The problem here is that because of modern technology a person can be sustained for a long period of time. A cancer patient that lapses into a comma may or may not recover and its up to the discretion of the attending physician and family to remove the person from life-support. This procedure is not only expensive, but also emotionally draining for all those involved. Physicians are often put in a position where they have to make a decision, despite the wishes of the family. There are many sides to this issue and some controversy. One side of the DNR issue is one that has to do with the amount of psychological stress this puts the patient under when it comes time for the physician to discuss the topic. As had been discussed earlier, psychological stress of a patient is a major factor related not only to their wellbeing, but also their health during the entire experience of having cancer. It’s been shown that the best way a physician can handle this situation is to do it in increments and not completely disclose the information initially. This is similar to the non-disclosure of a cancer diagnosis, except that it surrounds the issue of death. Here in the West, once the physician and the patient arrive at an agreement about DNR, the patient is the one who signs the order. However in China, which has the policy in place for their cancer patients, the patient usually does not sign the form. This is a cultural practice related to cancer non-disclosure in non-Western counties and in fact a high percentage (compared to the West) of these patients are sent home to die.

These ethical issues, and a few more, are a constant source of debate between ethicist, philosophers, and physicians. There is however a central theme and that is exactly who gets to decide what about a cancer patient in a life-threatening position. The above comments in no way describe the state of medical ethics related to cancer, but are merely a glance at the ever-changing area of cancer care. Several salient points can be draw from this investigation. The first is the psychological impact these issues have on the patient and their families (to be discussed later). The other issues are related to recent changes in the way physicians are being trained to deal with ethical dilemmas, which unfortunately are a part of the experience of having cancer. It was mentioned earlier that there was a certain unpredictability involved with cancer. This unpredictability has to do with the response to treatments and whether or not the disease will come back. However, there is another aspect to cancer that unfortunately is predictable. Because of the large number of cancer deaths physicians are usually able to give terminal cancer patients accurate information about when the will die. How the physician communicates this and to whom is dependent multiple factors. Factors such as with eastern decent patients, who many times are not informed of the exact time of death, and family members of an incapacitated patient, have to handled with care. Medical ethics is an ever-changing field, but in the end, the hope is that all parties involved with cancer can benefit from these changes.

Number 8 Cancer Treatment

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 8 Cancer Treatment

The nature of cancer treatments, to a certain extent, has evolved over the last 30 years. However there are some lingering problems such as general toxicity and the use of chemotherapy as a shotgun. That last statement refers to using compounds that inhibit rapid cell growth, which includes rapidly dividing normal cell. Early treatments for cancer used chemical agents (chemotherapy) to retard the rapid growth of cancer cells. Scientists who identified the fact that cancer cells have a higher metabolism than normal cells developed these chemical treatments. Cancer cells take in more nutrients and substances at a higher rate than their normal counterparts. Scientists also found that if they administered low doses of a toxic chemical, the tumor cell would absorb more of it and die. But prolonged exposure to these chemical agents produced harmful side effects. One immediate effect of this type of chemo use is hair loss. Because the cells within hair follicles have a high metabolism these drugs target them. Despite this, their use has been successful in treating many malignant cancers. Anti-cancer drugs have a long history that go back as far as the 1930’s where Yale researchers became interested because of the effects of mustard gas in an accident. Apparently the victims of this accident were completely devoid of an immune system and had vastly lower numbers of white blood cells. The gas had eliminated the lymphatic system, which contain these rapidly dividing cells. The scientists got the idea to use an injectable form of the active compound because of a type of cancer called, lymphoma (white blood cell cancer), which at that time was deadly. These patients made a remarkable, but transient recovery.

One agent used in early treatments was called Mitomycin-C. It was a by-product of a certain type of bacterium and later made in the lab. It has the ability to cross-link the DNA chains. The cell is unable to divide because the separation of DNA is an essential component of cell division (mitosis).

In early studies, the doses were too high and sometimes led to the death of the patient. When the chemical is dissolved it displays a deep blue color. In the initial trials, it was clandestinely termed “The Blue Death” after a rat poison. Extensive clinical trials have proven that at the proper dose and rate it is effective against esophageal cancer, breast cancer, and bladder tumors. It also is used in the laboratory so that scientists (mostly tumor immunologists) can study immune T cell responses to tumor cells. Since the tumor cells cannot divide after Mitomycin-C treatment, the only measurable cell division comes from the stimulation of T cell nuclear replication and cell division induced by the inactivated tumor cells.

The evolution of Mitomycin-C from toxic chemical to a useful chemotherapeutic agent took years. Today, chemical agents used for cancer therapy are designed to attack specific tumor cell products that are unique to the tumor, which can lead to the death of only the cancer cell. This type of chemical therapy reduces the side effects normally associated with use of broad-spectrum chemical agents. Broad-spectrum agents would

often weaken or severely deplete the very cells (immune cells) in the body capable of removing the cancer cells. Broad-spectrum chemotherapeutic agents, including the ones mentioned above, are toxic to the body to one degree or another. The problem is the age of the patient. Two patients with the same cancer diagnosis but 35 years apart in age may get different modes of treatment or different doses of the same chemical. The younger

patients (say, 20 years old) can withstand a higher dose for a longer period of time than the older patient (55 years old). Therefore, the prognosis (possible outcome) of the same type of cancer can be better for a younger person. This is simple physiology, but there are exceptions and in some cases completely opposite results. This is the nature of chemotherapeutic treatment. Scientists are now recognizing that the response of a tumor to chemotherapy is related to the genetic make-up of the patient. Scientists noticed that patients with the same type of cancer who responded positively to a given agent had identical genetic markers. So, in a new approach, they could design these drugs around the genetic make-up of the patient. This is an ever-changing field of scientific research, which will be joined by a newer type of cancer treatment called Immunotherapy.

So what is immune-based therapy (immunotherapy) for the treatment of cancer and how did it start? This type of treatment began in the mid-1970 while scientists were studying a mouse tumor model. The tumor was blood-born and usually lethal, but they found an active immune response to the tumor. The tumor cells were grown in the lab. Once the cells were inactivated (using Mitomycin-C) they were cultured with normal mouse lymphocytes (T cells) over a series of days in a temperature and gas controlled incubator. After this culture period it was found that the T cells had become immune to the tumor with the ability to kill them. Subsequently, massive amounts of these T cells were produced. Mice were given an inoculation of small numbers of live tumor cells followed by an injection of tumor-immune T cells. Under controlled conditions it was discovered that the mice that received the immune T cells survived much longer then those that did not. This technique was called “adoptive transfer”. This ushered in an entirely new approach to treating cancer. Recent advances in genetic transfer have allowed scientist to genetically engineer T cells to make them recognize the tumor. This means that normal T cells can be removed from the body, genetically altered and then returned to the circulation to fight the tumor. This technique is used in conjunction with natural immune-stimulating proteins such as lymphokines. This is how the natural processes of the immune system can be manipulated to fight previously lethal cancers and is described in a very simplistic manner (Alexander 2011).