Prostate Cancer, Support Groups  and Prostate Cancer Treatment

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. In

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.