living with prostate cancer: giving back to help others navigate a cancer diagnosis
“we’re not doctors. we’re not professionals. but we can set it up so that people feel like they’re not alone and that they can have somebody to help them go through (prostate cancer).”
7 minute read
al carl, left, and terry day, right, were both diagnosed with prostate cancer. today, they work with a support group to ensure other people have access to information, care, and assistance when they need it.
al carl and terry day
both al carl and terry day, a retired army officer and a retired military officer, respectively, had relatively no obvious or commanding symptoms of prostate cancer before they were diagnosed. their respective physicians noticed that their prostate-specific antigen (psa) numbers, a marker indicating cancer, were increasing through routine testing.
then they both got the news.
“my brain shut down,” said al. “luckily, my wife, who was a nurse, she went with me to all my appointments,” he said. “i wasn’t necessarily understanding, and secondly, i really wasn’t listening. i was just more worried about having cancer.”
al wasn’t expecting it, so receiving his diagnosis hit him like a bag of bricks. for terry, though, whose psa levels had been slowly rising every time he got his six-month check-up, it wasn’t as much of a shock.
“i was kind of expecting it,” said terry. “emotion-wise, i didn’t really have the same reaction. a lot of guys do where they’re just aghast and they’re shocked and they stopped listening and so on.”
then came their journey through the diagnosis, treatment, and eventually, being involved in support groups to help deal with their new normal, as well as help others who are forced to embark on the same path.
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getting on the right treatment course and dealing with the side effects
once the diagnosis came for al and terry, they had to consider and undergo treatments. within three months of his diagnosis, al underwent robotic surgery, a form of high-tech procedure that’s conducted using robotics as opposed to a human surgeon’s hands.
then he had to undergo 33 sessions of radiation over five weeks, an experience he said wasn’t painful, but did come with one very uncomfortable aspect.
“you have to make sure your bladder is really full, and so that’s always a challenge,” he said. “if it’s not full enough, you have to go back and drink more water, but then if you drink lots of water, then by the time you get off the table and you’re in a hurry to get into the washroom.”
his final treatment was hormone therapy, designed to “zero out your testosterone,” so that the cancer can no longer thrive. al notes that the side effects from the hormonal treatment gave him a new appreciation for those who go through menopause because of natural hormone depletion, because he was given a unique first-hand look into what it could feel like when your primary sex hormone is completely erased from your body.
he also dealt with other side effects.
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“most people, they will maybe have incontinence and maybe the inability to get an erection for a while, and then most of that goes away,” he said. “but in my case, it’s sort of carried on, and seven years later, i still have more side effects than most people would have.”
for terry, his first step was getting on hormone therapy, called androgen degradation therapy, or adt. he took the drugs both orally and subcutaneously through an injection into his belly area. the side effects he experienced weren’t all the same as al’s, but they were just as unpredictable.
“i got a lot of sweating, sudden sweating, but like crazy for five minutes and then it would stop,” said terry. “i lost all the hair on my chest that came back. breast enlargement can occur and does occur and is not reversible, but most of those other side effects are reversible once you stop taking it.”
after roughly three months of hormone treatments, terry had to have a brachytherapy procedure, which involves “temporarily putting small seeds of a radioactive material inside the prostate and leaving it there” for a set period of time to work its magic against the potentially deadly cells. then came external beam radiation, which he did once per day, five days a week, for three weeks.
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“the only (side effect) i experienced was … difficulty in urinating,” said terry. “it turned out that’s because the urethra had some scarring in it, which caused a bit of restriction. i still have that issue, and it just takes me a little longer to go to the bathroom.”
today, both al and terry are in complete remission, with undetectable psa levels.
“you’re not really cancer-free, but you’re free from being sick with it,” said terry.
dealing with newfound fears with prostate cancer
prostate cancer can often recur, and up to 30 per cent of people who go through treatment and go into remission will find that their levels of psa rise again, indicating a new bout of cancer.
while al and terry are both free of recurrence as of right now, the fear can often be a loud knock coming from the back of their minds.
“for myself, it’s hard to wait a whole year for another test. that’s what we’ve been doing,” said terry. “so, it weighs on my mind every year. you know, you’re kind of biting your fingernails a little bit. you’re just saying, gosh, i hope it’s going to be a good news thing here.”
al believes that he would still worry about recurrence, but for him, belonging to a support group and being part of something that has the topic front and centre in conversation more often than not is what makes it a little more prevalent in his and terry’s lives.
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“we probably worry about it a little more than normal people just because it’s always in our face,” he said.
al also notes that because of his career background in the army, being “macho” is something that came naturally to them throughout life, something that made going through prostate cancer, its side effects, and the new fears a little bit more difficult.
“when you have to come to grips with (the fact) that you’re not invincible, and you have to worry about your health, that’s not something we traditionally would have done,” he said. “it did change me emotionally. i think some people still think i’m too far away, but i think that it did soften me up a lot because i realized that i was vulnerable.”
while terry admits that “there’s a lot of macho” that goes on within his military career as a fighter pilot, his perspective towards the potentially life-threatening disease was a little different because of his role.
“when you’re taking off in a jet with an afterburner on it and you’re hurtling into space … you know you have to constantly remind yourself that you’re only seconds away from disaster,” he said.
as a result, his perspective on his cancer journey is more practical.
“i know that life has to end sometime. i just hope i don’t end up succumbing to the prostate cancer,” he said.
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his work with a local support group also helps him divert attention away from his own situation, allowing him to take a break from any fears that arise after being diagnosed with prostate cancer.
finding and giving support
both al and terry belong to an ottawa support group through the prostate cancer foundation canada, the only one in the country that has support groups for men living with or diagnosed with prostate cancer.
they work with others in the group because they understand how important it is not to be alone when going through this experience, and they get that men often isolate themselves, not on purpose, but because that’s just the way they are frequently conditioned to act.
“men tend to not share information, especially if it’s of an intimate nature,” said al. “and so left upon to yourself, most men don’t. certainly, they won’t talk to their families, and they may not even go and try to find information online, but there are always things that are happening or new products that are coming that may help relieve symptoms.”
al loves being part of the support group and helping others connect with information, speakers, and each other, because he knows that otherwise, they would suffer in silence.
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he also notes that their groups are inclusive to everyone with a prostate, not just those who are male at birth, so that all people going through it can know where to look when finding inclusive, informative, and viable assistance that will break the isolation that often comes with a cancer diagnosis.
for terry, helping people is a way for him to both give back to the community and foster a deep level of happiness within himself.
“if you want to be happy for life, help somebody,” he said. “i get a really great reward from being able to help people go through this experience. we’re not doctors. we’re not professionals. but we can set it up so that people feel like they’re not alone and that they can have somebody to help them go through this.”
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