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.

Life, etc.

Hello loyal readers! (Or, people who Google searched “cupcake recipe” and accidentally ended up here.)

I haven’t been updating the blog too frequently, but this is not because I have nothing going on, but rather the opposite. I often sit down to write and then quickly get side-tracked doing something else and lose my focus. I could blame it on lingering chemo brain, which I do believe I occasionally suffer from, but it mostly comes down to just being busy. Which is a good thing. Here are the things that have been occupying my time and my mindspace (which apparently isn’t a real word, but it should be).

TELEVISION! I realize watching TV might not be seen as the most fruitful of activities, but there is so much good stuff on right now that I am giddy about. I can talk about TV for hours, so if anyone ever wants to do that with me, feel free. My newest obsession is How To Get Away With Murder which is the most entertaining thing I’ve seen on television in awhile. I also recently watched both seasons of Rectify, which is on Netflix, and deserves way more attention than it’s been getting for its unbelievable performances and gorgeous cinematography. And of course there are all my old standbys: Mindy Project, Parenthood, Scandal, etc. And there is still so much I want to check out (The Affair, The Leftovers, Transparent) but haven’t had time to yet. I LOVE TV SO MUCH AND I CAN’T STOP.

ELLE! If you’ve been following along, you know that I’ve started writing my monthly column for Elle Canada magazine called #LIFEREBOOT about discovering life after cancer. So I’ve been busy exploring and writing and doing many fun things, like going on mindfulness retreats and leaning off very tall towers. Every month that I see the new issue in my mailbox, I still get giddy when I turn to my page and see my name and photos and words. It’s been a fun challenge, and I am learning a lot. For February’s issue, I’ll be writing about something that’s been keeping me busy for the past couple months and that I’ve enjoyed immensely but I don’t want to spoil it, so you’ll have to wait and buy the magazine.

ANXIETY! This is nothing new but is simply now a common theme in my life that likely will never completely go away, and that I must learn to live with. I don’t mention this stuff for pity, or for advice, but merely to help non-cancer people understand that us cancer-people live a very complicated existence, often filled with various bouts of fear and anxiety. Sometimes I think I’m in the clear and over “that phase” and then all of a sudden, something new pops up — a new pain, a new ache, a new symptom — and I question my health and my future. I worry about not being alive in 5 years, I worry about my body betraying me in an awful and grotesque way, I think about what my funeral might be like, and who might show up. Again, this is NOT a cry for help. For 90% of my days, I’m living and loving my life and having a ball. But the other 10% is still kind of crappy and that’s just the hand I’ve been dealt, as have many others. And we’ll get through it, because that’s all we can do.

MEXICO! A perfect cure for all life’s problems… vacation! We just got back from celebrating our third wedding anniversary in Mexico on the most beautiful beach, where we ate fabulous food, swam in the ocean and read books by the pool. It was divine. I’ve said this before, but since having cancer I am incredibly grateful for any chance I get to just relax and be spoiled. Life is short, and I want to spend as much of it as I can sitting by the ocean and feeling the sun on my face. There is nothing better, in my opinion. Here are some photos if you like that kind of thing.

NEW JOB! Some of you may have heard of an awesome charity called Rethink Breast Cancer and if you haven’t, well now you’re gonna. They support a cause very near and dear to my heart: helping young women with breast cancer and those affected by breast cancer. They provide cutting edge resources, such as their new digital content, including a video by yours truly.


For this video, I came up with my own idea/script/tips. Nothing was spoon-fed to me. This is because the people at Rethink are cool and smart and believe in allowing young women with breast cancer to share their unique voices. My involvement with Rethink will now be turning into my day job, as I begin a new contract position with them entailing the coordination of various online initiatives. My advocacy and concern for issues affecting young adults with cancer has become a huge part of my life, and I’m excited to work somewhere that will foster that passion.

So, there you have it. Lots going on. Lots of changes. Lots of new beginnings. Lots of good stuff. Lots of hoping and crossing fingers for more good stuff. Let the good times roll.