Prostate Cancer Survivors Facing Infertility
In the United States, about one in five adult men will be diagnosed with prostate cancer, making it the most prevalent type of male cancer. Often times, detection occurs after the age of fifty; however, as awareness of the disease is growing, it is becoming more and more common to see patients who are in their thirties and forties. Testicular cancer, although the most prevalent type of cancer found in men ages 15 through 35, is far less common. The American Cancer Society estimates that there were 189,000 new cases of prostate cancer in the U.S. last year, compared to 7,500 cases of testicular cancer. For those men who choose treatment of their disease, the primary goal is to destroy cancer cells before they have an opportunity to metastasize outside of the prostate. This effectively means that the cancer treatment will destroy the prostate’s ability to function.
Morbidity of impotence and incontinence from treatment is significant, occurring in life-impairing degrees for a majority of men. Prostate surgery can injure nerves and arteries causing impotence. External beam and brachytherapy radiation treatment can cause arterial scarring, inhibiting blood flow to the penis. Both surgery and radiation risk injury to the urinary sphincter. For men who have been diagnosed and treated for prostate cancer, the pursuit of parenthood can be both frustrating and expensive. Since one of the prostate’s functions is to provide for the delivery of sperm, prostate cancer treatments such as radiation, cryosurgery or surgical removal of the entire prostate and seminal vesicles significantly reduces or eliminates altogether semen ejaculate. Consequently, prostate cancer treatments render men infertile, save for the procedure of harvesting sperm from the testes for in vitro fertilization.
The only family-planning options for men seeking prostate cancer treatment are sperm banking before treatment, sperm-harvesting from testicles after treatment or adoption. All of these options can be emotionally-stressful, and bare a financial cost that not everyone can afford. Malecare is a six-year old non-profit organization founded by oncology social workers and psychologists. These professionals were responding to a need for clinically-driven psychosocial support for men diagnosed with cancer and their families. Most of the Malecare clinical staff are also prostate cancer survivors. Malecare developed and facilitates programs for prostate, testicular, and male breast cancer patients worldwide.
Programs include individual counseling, support groups for couples, support groups exclusively for gay men, groups conducted in Spanish, and didactic lectures by physicians, scientists, and well-known patients about state-of-the-art treatment and lifestyle changes. Malecare’s most significant contribution to the field of psycho-oncology has been the development of weekly prostate cancer support groups that focus on adjustment disorder in a workshop-like setting. An adjustment disorder occurs when a person develops life-inhibiting emotional or behavioral symptoms in response to an identifiable stressor, such as the diagnosis and treatment of prostate cancer. All of the groups have men at varying stages of treatment.
Men with years of post-treatment experience find great value in sharing their knowledge. Newer members can find comfort in a strong support system. The couples groups are currently exclusive to prostate cancer patients and their spouses and partners. Heterosexual couples typically join them, although they are designed to be sensitive to gay issues as well. Couples present feelings of isolation and anxiety, which can be alleviated in the group setting. Sometimes, spouses cannot understand or have difficulty dealing with the struggle that their mates face. The couples groups have witnessed many spouses leave their husbands after treatment, a situation that was recently shared by the leader of the Israeli Malecare chapter. I
n another instance, there was a suicide attempt of a spouse of one of Malecare’s group participants. For this man, the availability of the group meetings, which in New York City occur three times per week, was indispensable. Indeed, his experience was shared by other group participants and helped men in the group understand some of the deep emotional consequences of treatments that result in reproduction problems. Since relationship problems inevitably surface and some relationships end, Malecare developed a style of couples support groups which addresses the changes couples face after prostate cancer treatment. For many, it is the only source of empathy and comfort they find during their struggle with cancer and treatment.
Couples have reported that their friends feel cancer patients should not have children since their survival is uncertain. One man says his brother told him to stop complaining about his reproductive concerns and simply be grateful he was alive. Couples also discuss concerns about changes in sexual behavior as a consequence of prostate cancer treatment, including impotence, alternate forms of intimacy, and problems relating to incontinence following treatment. Often, concern about the loss of a natural capacity to have children is voiced. As emotional support is given and strategies are shared, feelings of anxiety and depression often decrease. As prostate cancer can be fatal, men express concerns for their family’s future, or, for the newly wed or single men, fear of the inability to start a family. I worked with one man whose wife gave birth to their son just two days after he was diagnosed with an advanced stage of prostate cancer. Another man, age 39, felt guilty that his eightyear- old daughter would have to share his worry about his health and possible premature death as she grew up. Almost all the fathers we have worked with are concerned about the probable hereditary nature of prostate cancer.
Even if they say that they currently have no plans to ever have children, men who come to Malecare’s prostate cancer support groups prior to treatment are encouraged to preserve sperm before prostate cancer treatment. Many men benefit from the peace of mind of knowing that their capacity to have children is maintained, even if they initially state not having plans for a family. If after a year the men do not want to continue paying the sperm bank bill, they can always opt out. For many men, infertility after cancer treatment creates sadness and feelings of isolation and inadequacy. Some men report that their doctors do not discuss with them post-treatment impotence or are not sensitive when they introduce the topic.
Many times, Malecare staff members have spoken to men who feel frustrated, fearful or angry that their heath care professional did not address their reproductive concerns due to their age. Homosexual men face the additional prejudice of heterosexual doctors’ lack of understanding for the gay patient who might like to become a parent of his own child in the future. Our anecdotal experience of many urologists, directly and as reported by patients, is that doctors see the patients’ primary struggle as survival. Quality of life and concern for family life is secondary. Nevertheless, this does not address long-term concerns if the patient does survive.
There are men who die within just a few years, even with treatment. However, prostate cancer is a slow growing cancer, with many men living 10 to 15 years after diagnosis, even without treatment. In Malecare’s groups, most men say that they wish their doctors had been more candid about post-treatment morbidity issues. While almost no one that I have met has regretted their treatment choice, most survivors struggle with the challenges of impotence, incontinence, and the absence of ejaculate. Even without a desire to have children, the ability to reproduce is something most men expect to have until the day they die.
The destruction of that ability in midlife is an unwelcome loss. In the Malecare groups, men are encouraged to respect their desires and understand that not all people will be empathic to their situation. In many cases, symptoms of depression are simply a human expression of feelings of regret about being infertile. If depression and anxiety reach clinically-significant levels, clients are referred to outside treatment facilities. However for most clients, the fellowship and peer support these men develop in the groups provides a workshop-like atmosphere where private issues can be broached and shared openly.
Since every man present has a similar experience, there is a great sense of empathy among participants. Malecare groups have shown that the previous support group models of once-a-month peer-led meetings are inadequate for the life-altering and lifethreatening issues facing prostate cancer patients and their loved ones. What works is a platform where men feel comfortable discussing their cancer, treatments, and the consequence of infertility.