When We Discover the “Why” of Cancer
By: Heather Mcleod
Tags: Health, Cancer, Life, Parenting, Death

When We Discover the “Why” of Cancer

Brock and Isaac, months before Brock’s cancer diagnosis in 2014.

It’s been three years and two months since my young husband died of kidney cancer. Yesterday, my mom-in-law called with news: a doctor has diagnosed the family with a rare genetic predisposition. They’ve suffered collapsed lungs for generations, which (we now know) is a red flag for Birt-Hogg-Dube syndrome.

This rare syndrome affects the skin and lungs and increases the risk of developing non-cancerous and cancerous kidney tumours.

Discovering why my husband died of cancer

I’ve never wasted time wondering why or how Brock got cancer. It was a mystery to everyone: a thirty-five-year-old farmer of certified-organic crops, who didn’t work with known carcinogens or smoke. He didn’t like strong smells, so we never used scents or strong chemicals in the house.

I figured we’d never know how Brock got cancer and had made peace with that.

Knowing now that he was likely killed by a genetic disorder doesn’t change anything. It’s a rare disorder, and he didn’t develop the benign skin tumours that signal it: I’m not surprised we didn’t discover the disorder or his cancer sooner. There’s no one to blame.

But even though I’m not unsettled logically, I still feel unsettled.

What this means for my husband’s family

For the bloodline, this news means genetic testing once a family member is twenty years old, followed by regular check-ups, including ultrasounds every three years to check for spots in the lungs.

If the skin tumours or lung issues are found early enough, they will be able to monitor and catch kidney tumours in the early stages.

(I haven’t spoken with a doctor yet. This is just what I understand from that phone conversation with Brock’s mom, followed by Google research.)

While this is not an ideal medical future for my son, his cousins, and his dad’s cousins, it is exciting and wonderful to know we can (I hope) prevent more deaths. Someday, they might even have a cure for the syndrome.

What this means for our son

For a “normal” kid, learning there’s a genetic disorder in the family would not be life-shattering news: most kids don’t grasp the finality of death or the seriousness of cancer.

NORMAL-KID’S MOM: “Okay honey, we’re going to do a fun thing called genetic testing.”

But our seven-year-old son, Isaac, has a unique understanding of sickness, cancer and death. We’ve talked about these big concepts since he was three, to help him understand at the most basic level why his daddy stayed in bed all day rather than play with us, and why his daddy wasn’t going to get better.

Because “sickness,” “cancer” and “death” are such loaded words for my kid, any conversation we have about how his dad got cancer is going to be extra complicated. Also: how and when do I tell him he might develop this syndrome too?

Hypothetical conversation:

Heather: “Your dad died because there’s a special sickness in our family that gave him cancer.”

Isaac: “Will you get cancer?”

Heather: “No . . . It’s just people related to your daddy.”

Isaac: “Will I get cancer?”

Heather: “Um. Probably not?”

Hypothetical conversation, attempt #2:

Heather: “Happy twentieth birthday! So, there’s something I need to tell you. Remember how your dad died of kidney cancer? Well, it runs in the family and we need to get you tested.”

Hypothetical conversation, attempt #3:

Heather: “Okay honey, we’re going to do a fun thing called genetic testing.”

Isaac: “What are you testing for?”

Heather: “To see if you have something called Birt-Hogg-Dube syndrome.”

Isaac: “What does that mean?”

Heather: “Your dad had it, and we want to see if you have it too.”

Isaac: “Is it a sickness? Is it cancer? Will I die?”

Heather: “It’s okay, your cousins are getting tested too.”

Isaac: “Are me and my cousins going to die of cancer?”

When to tell the kid

It feels weird keeping this from my son because we talk about most things, but Isaac is seven and he doesn’t need to know this development right now. I have to be the adult and keep a secret from my kid.

Someday he will ask me why and how his dad got cancer, and I will have an answer for him.

It will lead to more questions, and probably create new anxieties about his own health and mortality. I’ll have to figure out the right wording based on his age at the time.

Maybe, by then, there will be a cure.

Live like you were dying

Once I decided on this course of action, I also realized: we have to make every single day count.

This isn’t a new thought. Brock’s prognosis and death made me hyper-aware of how important it is to live with intention, to say yes to adventure and pursue our dreams now.

I’ve tried to guide Isaac toward this life philosophy.

But now: knowing he will likely face a future of uncertain health, knowing he might even get cancer, knowing he could die young like his daddy, there is an urgency to live well.

Every chance I get to push him to the top of a mountain, or pursue a passion, or enable a connection with a friend or loved one, I need to say yes. I need to spend the time, spend the money, and show him how to live a good life.

And if he lives to be 100, I can teach him how to live 100 incredible years.