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.
