By Neil Armstrong
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| Photo credit: Selina McCallum Actor Shemroy Parkinson in the 12-part series of educational videos promoting prostate cancer awareness by The Walnut Foundation and TAIBU Community Health Centre in September, Prostate Cancer Awareness Month |
Veteran community leader and nonagenarian Roy Williams says to be alive is the best option when dealing with prostate cancer and so Black men should focus on their health and not be concerned about being stigmatized or the loss of their sexual prowess.
That’s an outlook that Winston Klass, 80, a Director at The Walnut Foundation (TWF) and the Lead of its Prostate Cancer Support Group, shares as his cancer was discovered through a Digital Rectal Exam (DRE). “It saved my life because that is how my cancer was found,” he says emphatically.
Both men are survivors of prostate cancer and advocate for Black men to screen early — as early as age 40 — and regularly through Prostate-Specific Antigen (PSA) tests.
It has been 27 years since Williams, a 94-year-old retired professor at Toronto Metropolitan University (formerly Ryerson) and the first president of the Jamaican Canadian Association, was told by his doctor that he had the disease. He chose the treatment of a radical prostatectomy.
In 1996, two years after he retired, he did an annual physical and his doctor suggested that he should do a PSA test. The result led to him doing another PSA test which showed a high Gleason score — a system used to grade prostate cancer cells — and so the doctor referred him to a surgeon in Newmarket, Ontario.
“It was diagnosed to be cancer and that word frightened me. I had never considered the whole issue of prostate, and then prostate cancer,” says Williams who was informed of the consequences of the surgery: incontinence and erectile dysfunction.
After surgery he was not as virile as he would have liked to be, but he is happy to be alive.
Williams is among several Black men in Ontario who are survivors of prostate cancer and whose lived experience complement the work of The Walnut Foundation that has collaborated with TAIBU Community Health Centre to showcase a series of videos during September, Prostate Cancer Awareness Month.
The 12-part series was created to educate the community and to provide guidance and support to those living with prostate cancer. Each episode features a different concern: one has urologist Dr. Neil Fleshner of the Princess Margaret Cancer Centre answering the concerns of Andre Rose, a board member of TWF; another introduces 78-year-old Reuben Smith, a 16-year survivor of prostate cancer, and in another his daughter Simone Jennifer Smith talks about how the family was affected by the news. Filmmaker and digital creative Selina McCallum was masterful in her production of the videos which mainly show younger people on screen. As a men’s health interest and prostate support group working with the Black community in identifying the needs of Black men in the areas of health and related issues, The Walnut Foundation strives to make a difference in men’s health and wellness, and to provide a forum for discussion in a comfortable, safe and supportive environment.
In Canada, 1 out of 9 men will be diagnosed with prostate cancer in their life, and 63 are diagnosed daily with 11 dying from it. Black men of West African or Caribbean ancestry have almost double the risk of developing prostate cancer compared to non-Black men and the mortality rate among Black men is higher than others. They have a 76% higher rate of prostate cancer and are two times more likely to die from it. Black men tend to discover their cancer in its later stages due to not getting an early screening.
Doctors recommend that Black men start screening from the age of 40. If prostate cancer is detected early the survival rate is nearly 100% at 5 years, 98% at 10 years, and 96% at 15 years. However, if it is detected late, the survival rate in 5 years drops from nearly 100% to only 30%.
“Based on the various studies that have shown that Black men are disproportionately impacted by prostate cancer, given the fact that if caught early prostate cancer is treatable and curable and given the stigma, the relationship between the Black communities and systems in general and the health care system in particular, reaching out to the communities through various means of health information and promotion from a trusted community organization is very important. This is why TAIBU is honoured to support and partner with The Walnut Foundation in bringing these educational and awareness building resources,” says Liben Gebremikael, Executive Director of TAIBU Community Health Centre.
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| Photo credit: Selina McCallum Ravin is one of the actors in the educational videos rolling out this month to raise awareness about prostate cancer in the Black community. |
Williams’s doctor always recommended a DRE, also known as a prostate exam, and a PSA test. “The sooner the diagnosis, the greater the probability of the best outcomes in terms of the range of options of treatment that are currently available. But the early diagnosis is the best start in terms of the care of one’s prostate.”
When he was diagnosed, Williams relied on the support of his family noting that he was not aware of any support groups in Canada or Jamaica where he lived for some time after surgery. He believes support groups help Black men to overcome the stigma associated with the disease and build confidence in them that treatment is possible and there are survivors.
Klass says the video series underscores the message that men should screen regularly for prostate cancer, and it is very likely that they will catch it early.
“If you catch it early there is an almost 100% chance that you are going to die from something else. It’s a very simple message that underlines everything and it goes back to screen early and it’s a simple blood test,” says Klass who is also on the board of Prostate Cancer Support Toronto, and Prostate Cancer Foundation Canada.
The Walnut Foundation intends to hammer home that message hoping that the simplicity of it will motivate Black men to act. Klass says the videos gives the organization the flexibility to play them to multiple audiences in different locations and on social media, and therefore they should be able to reach more members of the Black community.
Like Williams, Klass was diagnosed with prostate cancer in 1996, he was 53; within four years he became active in a support group and describes it as quite a revelation.
“I remember when I attended my first support group. I saw these guys that didn’t look like they had cancer, it was very encouraging for me. I got to know them, and I realized they were very strong people in the way they confronted their condition and the way they managed it.”
Klass says this was one of the best moves of his life and the men who participated in those support groups left feeling that the sessions helped them emotionally and in tangible ways, such as finding resources to make informed decisions about treatment options. The feedback from group members allows someone newly diagnosed with prostate cancer to know about the side effects as well, but ultimately it is a personal decision.
“The problem with this though is that a lot of guys, especially Black men, are not aware of the existence of support groups for prostate cancer and they suffer in silence. The problem here is that prostate cancer affects an organ that is associated with sexuality and because of this there are a lot of myths around how you get prostate cancer.”
He says the average Black man who is diagnosed with prostate cancer tends to withdraw socially, particularly from women, because their sexuality has to do with performance.
“If we can get Black men to go out there and screen regularly then we’re there, in terms of our goal, because most of them, if they were to get prostate cancer, they would catch it early. That increases the options, and the chances that the treatment will not be intrusive and with side effects, or anything like that,” says Klass about debunking the myths and letting men know that they can be treated and recover their sexuality.
On the matter of addressing the stigma, Gebremikael says stigma exists because of a variety of reasons.
“One reason is due to the mistrust of Black communities with systems in general and healthcare institutions in particular due to generational and historical events that have caused this in the first place. This area is not an easy fix. It also takes time for institutions to take responsibility in redressing the mistrust.”
The executive director notes that addressing stigma in the community requires continuous engagement and awareness with information from a trusted source.
“We have seen the success of such community-based community engagement during the COVID-19 pandemic. The Black Scientist Task Force on Vaccine Equity has played a pivotal role in increasing uptake of COVID-19 vaccine among the Black population through the sharing of accurate and trusted information and education on the virus and the development of the vaccine, hosting community town halls and forums encouraging discussion and addressing concerns from the community.”
Klass added that if a man has prostate cancer there is a likelihood of a genetic connection and a family history of it increases the chances of their younger male relatives getting cancer. There are prevention routines such as diets and exercises that can delay or prevent it.
He underscored that a blood test does not confirm that one has prostate cancer but only suggests the possibility of it; confirmation only happens with a biopsy.
The Walnut Foundation remains focused on prostate cancer but has realized that it is not enough; as a result, it is expanding its vision to include men’s health in general and to enlist the support of younger men.
“One of the reasons for this is that prostate cancer is associated with older men and therefore an organization that focuses on prostate cancer can be perceived as older guys getting together. We must break this mould and start to make us more acceptable to the younger guys,” says Klass noting that their strategy includes mental health which is important to the targeted group.
To measure the effectiveness of the videos, Gebremikael says there will be monitoring metrics such as number of views of the videos and TAIBU will work with The Walnut Foundation to implement ways of eliciting feedback from the community through feedback surveys. “The aim is also to use these videos as community engagement tools as part of health promotion programs and events. These will be important spaces to engage with community members and seek the impact of the videos on their and/or family members' awareness, attitudes, behaviour and access to preventative services.”
To view the educational videos created by filmmaker Selina McCallum, here is the link: https://thewalnutfoundation.com/watch-our-videos/
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