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what it feels like: 'watching and waiting' while living with prostate cancer
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anthony henry, pictured with his wife carol mcintosh-henry, was diagnosed with prostate cancer in 2015, 14 years after his father passed away following a stage 4 prostate cancer diagnosis. supplied
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prostate cancer is the abnormal growth of cells in the prostate gland. it often progresses very slowly and is well-managed after diagnosis. but caught late, prostate cancer can be a serious disease that may cause difficulties with urinating and sexual function, spread beyond the prostate gland to other organs, and even lead to death.
according to the canadian cancer society (ccs), prostate cancer is a common condition that affects one in eight canadian men. of those, about three to four per cent will die. because of its prevalence, prostate cancer is the second most common cause of cancer death in men. but the disease doesn’t affect all communities equally. in fact, the ccs reports that black men of african or caribbean ancestry have almost twice the risk of developing prostate cancer compared to non-black men; are more likely to have prostate tumours that grow and spread quickly; and are more likely to die from prostate cancer than other men.
other factors that increase the risk of prostate cancer include a family history of the disease or other cancers, as well as if there are carriers of the brca gene (associated in women with an increased risk of breast or ovarian cancer) in the family or extended family.
doctors typically look for prostate cancer by performing one or both of the following screening tests: a digital rectal exam (dre) using a gloved finger to feel for abnormal growth on or around the prostate, or a prostate-specific antigen (psa) test, which is a blood test that looks for a specific protein that is produced by prostate cells.
anthony henry, 62, a financial advisor in brampton, ont. was diagnosed with prostate cancer in 2015, 14 years after his father passed away following a stage 4 prostate cancer diagnosis. his brother and uncle have also been diagnosed and treated. henry sat down with healthing to talk about his role as co-vice-president of the black walnut foundation, a black male prostate cancer support group, what it’s like to live with disease that needs to be monitored and why prostate cancer is different for the black community.
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this story has been edited for length and clarity.
what led to your diagnosis?
my story is really a family story. my background is jamaican. i was born there and i lived there for the first 15 years of my life. one of the things about prostate cancer is it seems to impact black people of african descent differently. we tend to have more aggressive tumours and the diagnosis seems to come later for unknown reasons. we’re still trying to figure it out. my father was diagnosed at age 64. so here is a gentleman who was a compliant patient — he wasn’t one to not go to the doctor. he took full advantage of the health-care system. but yet he ended up at 64 with stage four full-blown prostate cancer, and he died at 68. maybe if he was being screened and maybe if the system understood some of these disparities or differences in the disease progression, the outcome may have been different.
from the experience with my dad, my brother and i started monitoring at age 40 — an annual psa test [a prostate specific antigen test that measures the amount of psa in the blood]. there is some controversy around psa testing because there is a possibility of false readings. for example, if you were riding your bike or had sex the night before, that physical exertion within 48 hours could contribute to an elevated psa reading. a high psa reading could also mean an infection, for example, and not have anything to do with cancer.
from my perspective though, it’s important that we understand what to do with the test results and how to interpret them. i had an elevated psa reading in 2008 and that was only because i went to the doctor for a physical, and part of that included inserting a gloved finger in the rectum to check the surface of the prostate to see if there were any nodules or growth.
what are some of the biggest barriers to detection?
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some of us don’t even know who our father is. so if you don’t know you have a family history of this thing, you don’t know that you have a higher risk. another issue with this disease is secrecy. nobody wants to talk about their prostate. a disease like this and treatments can cause incontinence and erectile dysfunction — no one wants to talk about that.
for me, because of my experience and family history with prostate cancer, i always thought that if i was diagnosed, the first thing i would do was have surgery to get rid of it. but the standard of care today, compared to 20 years ago, has changed. not every prostate cancer diagnosis requires immediate treatment or surgery. people often say, ‘we are spending all this money and research and nothing changes.’ i would disagree with that because how we treat prostate cancer today versus 20 years ago comes from research and the body of knowledge built from experience. today, if you’re diagnosed with low stage, slow-growth prostate cancer, the recommendation is to do nothing and just monitor it. so i’ve been on the monitoring train now since 2015.
active surveillance for me meant no treatment. basically, you just do repeat psa tests every three months, then see your specialist to check if your number is going up. you do repeat biopsies if it’s warranted — where they take samples from the prostate. i’ve done a number of biopsies over the years. now they’re doing more mris as opposed to biopsies because mris are not as invasive.
has the diagnosis changed your life?
one thing about a diagnosis like this is it brings you front and centre with your mortality. it refocuses you on your health. you realize that you should be exercising more and eating better, and looking at quality of life issues and managing stress.
one of the problems with prostate cancer is you might have symptoms like frequent urination, which i did have at the time, but it wasn’t impacting my day-to-day too much. it was more of a subtle change. i talked to my doctor about it, and he said there was no urgency to do anything because it wasn’t affecting my quality of life. however, in the fall of 2014, when i did a psa test, my psa number had risen significantly from the year before. so i was referred to a urologist.
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there’s some debate about the shortcomings of the psa test, with false negatives contributing to missed diagnoses and false positives leading to over-treatment.
some people say psa means nothing. i remember my father’s doctor saying to me when i asked about it, ‘oh, psa means nothing. i have a lot of men running around with high psas.’ so while some in the medical community may feel that the focus on psa is overblown, i would say for myself, my father and a lot of the men that i’m in contact with through my support group, psa really is the thing that spurs further investigation — even if you have to pay $40 for the test in ontario because it’s not covered.
anthony henry is co-vice-president of the black walnut foundation, a black male prostate cancer support group. supplied
this is something that creeps up on you. if you’re not seeing a doctor regularly, if you’re not doing the psa test because you don’t want to pay the $40 or can’t afford to pay the $40, then it means that your cancer will probably go undiagnosed until there are obvious symptoms like blood in your semen or back pain. and by the time you are having those kinds of symptoms, your disease could have progressed to stage four.
the standard of care today says men should be monitored through the psa test at age 50 for the general population. for people like myself with the family history and or if you are from the caribbean or west african heritage, the recommendation is 40. that’s how i was able to pick up my cancer, and that’s when my older brother picked up his as well at age 57. his progression was further than mine so he was recommended to do surgery. he’s fine now. the same thing with my uncle as well that he was monitored, treated and he’s fine.
does it make you nervous to be living with cancer?
i was assured right up front that it was an early diagnosis, so i had some time to make a decision about treatment options. at that time, i was hearing about radiation, people were offering up prayers and recommending herbal remedies. my surgeon — he’s the best — talked about how he could spare the nerves that control urine flow and erection. and still other people told me that active surveillance was not for black men, that our cancer is too aggressive. there were a lot of confusing signals.
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but there are resources available in the community, like the canadian cancer society, that can tell you a lot more than what you could learn in a doctor’s office during a 10-minute meeting. there are also support groups like the one that i’m involved with, the black walnut foundation, specifically for black men. it really helps to have support. unfortunately, a lot of men don’t take advantage of them or don’t know about these resources.
for me, the thinking is if it’s not progressing, then leave well enough alone. but it takes an emotional toll. you have this thing that’s inside of you that may or may not be growing. initially, just getting my head around not doing anything was a challenge because my father died from it and everyone else i knew got treated right away, either with surgery or radiation to get rid of the tumour.
but the other part of it is that you have to be proactive in terms of your own disease management. going down this path is not for everybody. if you’re going to be worrying about it every waking moment, than you’re probably better off taking it out and moving on.
it also means you have to trust your care providers. you also can’t go down this path if you’re not going to be compliant with following up with appointments. if the specialist says, ‘we’re recommending you do this mri because it’s 18 months since the last one, or we should have you do a biopsy,’ you have to trust in that.
but six months down the line, or three months down the line, the prognosis could be different and it would then mean progressing with treatment. some men are on active surveillance for 15, 20 years or more and nothing ever happens — we’re not sure why.
when we go out and talk to church groups representing the walnut foundation and they want to know why this population is particularly at risk, we say that no one has figured it out yet. but then you can feel it in the room — you’re losing them and it’s painful. here we are telling them about the disease, and yet also saying that there is no solution.
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and advice for people who are also living with prostate cancer?
the first thing i would say is that there is life after a diagnosis. with treatment, men have been able to regain continence and some semblance of an erection. second thing is, don’t ignore the research and the education that is out there. the standard of care says you get checked at 50, which is what it is for the broader community, get checked, get monitored, start doing the psa. for black men, start testing at 40. why wait?
karen hawthorne is a toronto-based writer.
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