Monday, June 10, 2013

Cancer Bombs: Possible Not Probable

[Note: The first of genetic testing and prophylactic mastectomy series can be found here. All previous (and subsequent) installments of this series can be found here.]

October 31st, 2011.

The second part of this intake meeting was one-on-one counseling. We candidates (and whomever we brought for moral support) were called by name and paired with a genetic counselor.

We’re going to call mine Mary (sure, that’s generic, right?). Mary was delightful. Friendly, informative, knowledgeable. Love her.

She sat down in her office with Mr Lannis and I, and made sure we understood the elements discussed in the Power Point presentation (yes, we did). Then we went over my pedigree chart, which was created from the information I’d given in the family history questionnaire.

Again: depressing shit.

Those diagonal slashes mean those family members are dead. That shading means cancer. Insane, right?

Then she said something interesting—completely offhand, but it stuck with me. When in training, they map pedigree charts like mine, but are told that bearing witness to family history like this is “possible but not probable” while working in the field.

As in: sure, these families obliterated by whatever genetic plague exist, and their descendants are walking around you every day. But when it comes to the details of the demise of the previous generations, it’s rare for a genetic counselor to see a family history chart filled with answers... because everyone that person would ask for details, you know, tends to be dead.

Yes. Details fade generation by generation into the oblivion of loss.

Loss of life.

Loss of communication.

Loss of knowledge.

So I plugged my cousin and his penchant for genealogy (hi again, Neil!), and told her (as I’d said to my doctor), that I was pretty sure I was going to win the prize. Always had been sure.

Mary agreed.

Here’s where she began to discuss the next steps in the process. Steps which, at the time, despite being laid out, felt vague and theoretical... fictional... about to be applied to someone else...

If I chose, I was eligible to undergo the blood test to determine whether I had mutations in my BRCA1 and BRCA2 genes.

But wait...

Regardless of whether I underwent the genetic testing, based on family history alone I was eligible for a new program offered by Ontario Healthcare: The Ontario Early Breast Screening Program. It’s like the Ontario Breast Screening Program, but for high risk individuals, so the care begins at an earlier age.

The regimen of screening would include two clinical breast exams a year, a yearly mammogram (with accompanying ultrasound if there are any concerns), and a yearly breast MRI.

All of it covered by the healthcare system.

And it all started NOW, at the tender age of 32 (most women wait until they’re 50 to begin a similar screening process).

I'd had a mammogram and breast ultrasound a few months earlier, as per my family doctor's orders. For anyone who’s ever had a mammogram, I’m sure you can imagine my, uh, understated glee at the thought of squishing the girls yearly in the name of proactive care for the next (hopefully) 50+ years...

Mary’s job is to inform me of the program. My job was to decide whether I was on board.

Was I willing to participate?

OF COURSE!—I’m not stupid, just habitually distracted.

Though the thought of shooting mammography radiation into what are arguably the cellular version of grenades waiting for the pin to be pulled wasn’t exactly delightful, I erred on the side of early detection and said I’d put my name in.

As for genetic testing, clearly I was eligible or I wouldn’t be in her office. Mary carefully went over the possible results and what that would mean.

Positive (for a BRCA1 or BRCA2 cancer-causing mutation): proactive treatment. High risk screening, possible surgery, whatever I chose.

Negative (for a BRCA1 or BRCA2 cancer-causing mutation): go on my merry way, and pray my death-swept family had fallen to chance, and not some other element The Geneticists hadn't discovered yet.

Negative with unknown variants (for a BRCA1 or BRCA2 cancer-causing gene mutation—basically oddities in the appearance of the genes, but nothing previously identified as cancer-causing): High risk screening, and other options based on case by case factors.

But before I signed any paperwork or gave any samples, Mary wanted to make sure everything was in order.

As in: our affairs. Benefits and life insurance.

Because as soon as I signed anything or gave The Geneticists any samples, it would affect our supplementary policies. If I attempted to adjust our benefits and our insurance company caught wind of my results, my genetic testing would affect anything healthcare or life insurance related that’s not automatically covered by the government (at least concerning cancer coverage).

In fact, I’m no expert, but I’m pretty sure our insurance company would be sniffing around if they even suspected I was sitting in Mary's office.

Good news for us, back when I’d found the innocent lump mentioned in this post, Mr Lannis and I had reorganized our benefits to reflect what we figured was the inevitable.

We were certain I was going to die first. Young. And in a fiery, flashy, totally-boring-and-in-need-of-home-care way.

So I assured Mary that we’d already placed our bets that I was going to die. That’s what life insurance is, after all: betting you'll die and your spouse'll get to enjoy the financial consolation prize (Mr Lannis stands to inherit a good one, as we definitely put the lion's share of the money on my head).

I’m 99% sure she didn’t quite know what to do with me at that moment, darkly joking about my own destined demise. She laughed, hesitantly, but said if we were confident it was the way we wanted it, then there was paperwork to be filled out, and I could submit my sample today.

Today, today.

Mr Lannis caught my gaze. We stared at each other for a moment before I couldn’t contain it anymore and snorted a laugh. “I guess I’m giving blood to the vampires on Hallowe’en.”

And I did.

[The next installment of this series can be found here.]

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