These are my observation based on more than 19 years as a cancer survivor, advocate and support group facilitator observing survivors and their families in support group activities in local, regional and national venues.

The diagnosis of PC is particularly stressful. Men experience great anxiety and fear as well as concern about their deeply personal aspects of their manhood. It is a time of emotional immobilization for many. Many men find it very difficult to talk about what they are facing, and the feelings they are experiencing. The remark - “Men are from Mars and women are from Venus” correctly reflects that men and women are “emotionally” different.

HRQOL issues must be approached differently for men than for women. In oncology, the primary outcomes studied are overall survival, time to tumor progression and toxicity. Most HRQOL instruments in use today were developed for the purpose of group ssessment. Men are intimidated by a regiment of tests, given by health professionals in white coats in a group environment in a hospital setting. This venue is not conductive to obtaining unbiased psychosocial information.

Observations:

An open line of communications between the survivor and doctor is essential, but in many cases doesn’t exist. This poor line of communication is established when the survivor first meets with his primary care physician and continues as he navigates through the medical system for treatment and after- care. Survivors bring little knowledge of their condition to the health system. They are infrequent participants and depend heavily on their family care provider for information, coordination and support concerning their health. They play a “you don’t ask – I won’t tell” game that begins early in the diagnosis process and is reinforced and nurtured throughout the survivor’s medical journey. By the time HRQOL is introduced in the process, little factorial information has been obtained.

Given the very common side effects that accompany pc and its treatments, many survivors claim they did not discuss how treatment might affect their HRQOL of life. They claim their doctor did not truly discuss the potential side effects of treatment. In many cases, they thought, they were told that side effect issues were secondary to the cancer and would be discussed in detail after completion of a protocol of treatment.

Few survivors were questioned in depth by health professionals prior to their treatment concerning the survivor’s perception of incontinence and/or impotence, as it would relate to their future HRQOL. Emphasis was placed in getting rid of the cancer - everything else could wait. Often survivors believed that if sexual issues were important their healthcare provider would address them. Conversely, the healthcare provider may be reasoning: if sexuality issues were important, the survivor would address them.

Pc was an “old man disease” until the introduction of the PSA test. Life expectancy for many survivors was less than ten (10) years and many men were diagnosed with metastatic disease. In 2011, that is no longer the case. I am surprised to see the number of “40 year olds” who attend pc support meetings with their mates. They have tremendous anxiety and frustration as they attempt to determine which treatment protocol to pursue or determine what they should do now that the side effects have set in after completion of a treatment protocol. There appears to be an absence of psychosocial tools available to meet the needs of this younger population of pc survivors.

Could it be that the HRQOL assessment tools we are now utilizing are introduced late or not at all in the treatment process. Is there a way to integrate these tools into the treatment process? Should other health professionals e.g. psychologist, psychiatrist, marriage counselors etc, be integrated into the treatment team to ensure that a holistic approach is conducted in the treatment, not just “watching”, removing or radiating the cancer. Most men claim that little or no psychological support is given after treatment. So what do most of us do - “suck it up” like good men and move on. The result of this strategy causes major depression and stress on the survivor’s relationship with mate, family and friends.

Although many survivors state publicly that they continue to enjoy life and feel hopeful about the future, my one-on-one discussions with them reflect a different attitude. It is not uncommon to learn that they have restless sleep all or most of the time; have trouble with depression, however, have not discuss the matter with a health professional; are concerned about the lack of a sex drive (libido) and wonder when their cancer will return.

Many survivors seek out support groups because, in their minds, this is the only environment available to them to truly express their concerns. One survivor said – “I needed to find someone immediately who knew my terror: someone I could talk with on a personal - rather than on a clinical level; someone who had been there - I needed to find a survivor.” Former Surgeon General C. Everett Koop’s has stated “Study of support groups clearly proves that support group members respond more effectively to their treatments and have a better outlook on life which in turn assists in controlling the disease.”

The perception in the survivor world is that there is little opportunity to address their emotional and psychological well being with their doctors. Many feel they were rushed into a decision, however, these same people also admit that they were anxious to get “rid of the cancer.”

Other survivors claim they were active in the treatment decision process (this is what men are supposed to do), however, the reality of the situation is that many survivors depend heavily on their mate, health care provider and the “word on the street” concerning their treatment options.

Here are my recommendations:

• Identify when HRQOL data is collected – at diagnosis, during treatment and/or after treatment.
• Measure change in HRQOL - at diagnosis, during treatment and after treatment e.g., psychosocial outcome measures should be included at critical junctures along the continuum of care.
• Assess the HRQOL of the families of men with pc, and determine the impact of the disease on the family, which plays an important role in the impact of the disease on the survivor.
• Compare HRQOL among men with pc and a control group of men of the same age who do not have pc and measure HRQOL among men in both groups over time. Only in this way can the effects of pc be separated from the effects of aging on “men’s functioning.” The question is when to start the baseline since age-related changes will have occurred apart from the cancer. An individual’s perspective of what constitutes HRQOL may change over time. For example, a survivor may become impotent even though his PSA is 0. An individual may consider a trade-off between quantity and quality when making treatment decision and choose longer life over quality. Using a control group without pc would not provide a compete picture but would allow an epidemiologist to compare HRQOL issues with individuals with similar demographic characteristics.

~ Col (Ret) James E. Williams, Jr. ~

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We do not endorse any practice / product or make any medical claims – the information above is a personal story that others may find informative.