My hope for future young women with breast cancer

 

I always took it for granted that I would, someday, have children.

I never grappled with the decision of whether or not motherhood was for me, or thought of what my life might be like without kids. I made mental notes of my favourite baby names, and imagined what they might look like. After meeting and marrying my husband, the desire to start a family grew stronger. Maybe she’ll have his eyes and my mouth, I thought. I hope he gets my husband’s athletic ability, and not mine. I dreamed and planned and let my mind wander to a future that I thought was secure.

I made an appointment with my doctor, thinking maybe we’d broach the subject of stopping my birth control pill. I felt nervous and giddy at the thought. How did I get here? Was I really ready for this? What if there was a problem?

And then, there was a problem.

A week before my doctor’s appointment, I found a lump in my breast.

I changed the purpose of the appointment to talk about boobs instead of babies. And after several tests and a couple weeks of waiting, I received the diagnosis. Breast cancer. I had just celebrated my 28th birthday and had been married for less than a year. And, ironically, I did end up coming off my pill, but not for the reason I had intended; rather, the breast cancer I had was fueled by estrogen (a main ingredient of the birth control pill), so I was told to immediately stop taking it. No more pill. But no baby either. To say things were not going according to plan would be a massive understatement.

In the same conversation where I learned I had an invasive, aggressive breast cancer, I also learned that the chemotherapy I’d need to undergo could cause fertility issues. Major double whammy.

At first anything other than the fact that I might die seemed inconsequential. But after taking some time to process everything and meeting with a fertility specialist, the reality set in that there was now a possibility I’d never have children. I was devastated.

I considered undergoing fertility preservation treatment and went through the initial steps, but ultimately pulled out at the eleventh hour due to timing factors, enrolling myself in a clinical trial, and not being comfortable at that point with injecting hormones into my body. We decided to accept the risks, and hope for the best.

Now I am two and a half years past my diagnosis, and my baby-making clock is ticking once again. Time to get a move on, right?

Not so fast.

Because my cancer was hormone-sensitive, I need to take a drug called Tamoxifen that is proven to reduce the risk of the cancer returning and possibly spreading to another part of my body. The newest recommendation is to stay on this drug for 10 years. Great news, right? A drug that could actually help keep me alive. I am lucky to have that option.

Unfortunately, hormonal therapy for cancer comes with a whack of side effects. The biggest one for me is that I’ve been told not to get pregnant while taking it, due to its potential to cause birth defects.

I am 30 years old now and have been taking Tamoxifen for almost two years. If I stay the course of 5-10 years, and take into account my chemo-aged ovaries… well, you can do the math.

So now I find myself again in a sticky situation, forced to make another difficult decision on top of the ones I’ve already had to face. (Fertility presevation? Double or single mastectomy? Radiation? Reconstruction? Cancer has a way of forcing you to be decisive.)

The way I usually make my decisions is to do read up on all the research and literature I can possibly find. But in this case, there are no studies assessing the risk of pausing hormonal therapy to get pregnant. Zilch! As Dr. Susan Love writes, “We are frequently asked what would happen if a woman stopped taking tamoxifen between two years and five years, and the truth is that we just don’t know because we have no studies that have looked at that question. …Because there is no data to support stopping early, this has to be a personal decision, and it is undoubtedly not an easy decision for many women to make.”

I constantly toss scenarios around in my head, playing out the various possibilities. What if I continue treatment, and by the time I’m done, I’ve missed my window to get pregnant? What if I stop taking my pill, get pregnant, and I end up dying and not being able to raise the kid I just had? What if I take a break, get pregnant, go back on Tamoxifen and we all live happily ever after? (Obviously this third scenario is the one I cross my fingers for.)

In my case, these are the cards I’ve been dealt, and I won’t be able to get the answers I need by the time I need them. But the really good news is that young women with breast cancer in the future will have the data they need to make an informed decision.

The POSITIVE ‘Baby Time’ trial will investigate if interrupting hormonal (endocrine) therapy to get pregnant increases the risk of breast cancer recurrence. This is the exact study that, had it been done ten years ago, I might not find myself in the situation I’m in right now.

I’m so excited and proud that Rethink Breast Cancer is committing to funding the Canadian arm of this international trial. They need to raise a lot of money to make this happen, so please give generously! Your contribution will make a huge difference to so many young women who one day may be walking the same path I’m on. And let me tell you, anything that can make that journey even a little bit easier, is worth doing.

And as for me, I’m not sure where my choices might lead me, or how this story will end. But I have hope. Hope that I’ll have the family I wanted, hope that I’ll live to see that family grow, and hope that pregnancy will be a possibility for all those young women who follow behind me in the years to come.

There is always hope.

Beyond the scars

Hey blog! I’m sorry I’ve been neglecting you. I haven’t felt too inspired to write lately. Most of my brain power has been focused on writing cover letters and going on interviews, which is actually quite mentally taxing, although necessary. But writing and talking about job stuff is kind of boring after awhile. I mean, as much as I love writing/talking about what a stellar employee and brilliant human being I am, it can be a bit draining. Sometimes I wish the whole “having cancer” thing could just give me a free pass, and serve as a kind of certificate of excellence – proof that I can “deal with stressful situations” and “overcome challenges.” I mean, any kind of workplace high pressure situation really now pales in comparison to the kind of stress and types of decisions I’ve had to make. Alas, cancer doesn’t get you a free pass, and I’m just the same as all you other cancer-free unemployed suckers out there. C’est la vie.

Other than spending my days in pursuit of the next job, there really isn’t too much else to report. It’s been over a month since my last cancer-related appointment, which I think is the longest I’ve gone since 2012. And I must say, I really am enjoying the break. It’s nice to see things on my calendar like “movie night” or “girls’ brunch” instead of “MRI” or “blood draw.” More and more, I am distancing myself from the cancer community and feeling like it was all some sort of drawn-out, psychotic dream. The potential for a normal existence, at least for the immediate future, really feels like a reality now. I wish I could just completely ignore and forget about it all, but the hot flashes and chest tightness and various other bodily defects stop me from doing so. I am living every day with all of the effects of trying REALLY hard to prevent my cancer from spreading, and although I have zero regrets about any of the choices I have made, it’s still a challenge to live with the many consequences of my so-called “battle.”

There’s an art exhibit in Toronto right now called the SCAR Project. You might have heard of it — photographs of young women with breast cancer, with their chests exposed, scars and all. I’ve seen a lot of press about the exhibit, especially since I’m wrapped up in this “young breast cancer community” so it’s impossible not to be aware of these types of things. The gallery is actually very close to where I live, so I thought of popping by one day while it’s here. It seems like something I should “support” since these are “my people.” Yet there’s also something keeping me away from it. I believe in the importance of these images, especially as contrast to all the “pinkifying” of breast cancer, where all we see is images of women who look healthy, and happy, and whole. Breast cancer, in my humble opinion, is extremely ugly and horrific, and I think we do the “cause” a great injustice when we try to cover that up.

However, right now, I’m kind of in a place where I’m trying to move past the harsh realities of breast cancer. I don’t know if I really need to stare at a bunch of images that remind me of what’s happened to me. I don’t need the reminder or the education — I get it every single time I look in the mirror and see gigantic scars. I am my own “real image” of a young woman with breast cancer. All I have to do is lift my shirt, and there I have it, my very own art exhibit. And for right now, I think that’s enough for me. I commend the women who posed for these photos and truly think they’re brave for doing so. But I think I’ll likely avoid checking out the images in person, at least for the time being. I don’t want to compare my scars to their scars or my reconstruction to theirs. I don’t want to feel any more anger or sadness than I already do about breast cancer and what it has done to me, and continues to do to way too many young women. I guess, in a sense, I’m taking shelter with the exact group that the SCAR Project is trying to oppose – the group that wants to ignore the ugliness of breast cancer and look away and pretend it doesn’t exist.

I guess for now, that’s just where I’m at. I want to pretend it doesn’t exist. I want to live in ignorance, just for a single second. I have spent so much time in the ugly, scary, dark world of breast cancer. I don’t wish to immerse myself in it anymore right now. I want a pretty, fuzzy, pink, happy image. I know it’s not real. I can’t un-know it. I know what lies beneath it all. But sometimes, we all need to allow ourselves to “make-believe” and pretend and imagine that everything is just fine and dandy and perfect and everything will be okay. And who knows. Maybe it will be.