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.

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8 thoughts on “My hope for future young women with breast cancer

  1. Hi Steph,
    You commented on my blog and now I’m really enjoying reading yours.
    I’m a third of the way through chemo and fertility was a big issue for me from the outset. The Boy and I went through a round of IVF and now have a few embryos stored away for later. Ideally, they’ll be for our second child, my doctor said women who have chemo in their 20’s/early 30’s have a good chance of falling pregnant naturally, so hopefully you fall into that boat.
    Once chemo is over, my oncologist and I will negotiate how long I have to be on Tamoxifen, Less than a decade would be nice.
    Rx

  2. Hey Steph – not sure how closely you follow ASCO but I read about this guy, you’ve probably heard of him but if not it might be worthwhile to do a bit of a dig into his research!

    “Dr. Hatem Azim of Brussels presented a poster at ASCO which showed that the breast cancers of younger women have different mutations (especially in ER+ disease) than the cancers of older women. ‪#‎ASCO15‬ Dr. Azim has also published extensively on the safety of pregnancy post-breast cancer. Thank you Dr. Azim for focusing on issues relevant to young women with breast cancer!”

  3. Have you considered pausing Tamoxifen, preserving some eggs, and staying the course with Tamoxifen. That way you have your little safety net of eggs and you can cash them in when the time is right? Just an idea. I know it is expensive, maybe raise some money, but a short influx of estrogen may be less risky than a full 9 months of hormones now. 🙂

  4. I love this topic as it hits close to jome however I wasn’t estrogen positive but still a difficult decision I also did not to egg preservation.

    I will say I know of many women who were er+ who have had children. One got the ok 2 years on tamoxifen to stop and she had a baby now back on it. She just stopped it long enough to get pregnant with her second child and is still doing well! Don’t give up
    Hope

    1. Thanks Becca! I know a few women who’ve had happy outcomes as well. I definitely love hearing those stories. Hope you’re doing well! xx

  5. steph, i have faith in you, and i really hope you get to be a participant in this amazing trial. we were working on having a baby too when good old breast cancer stomped over my heart and dreams. my oncologist has said she would monitor me closely after my herceptin is done in a year’s time, while i try to have another baby, and then do tamoxifen after – ( we have three frozen embryos, not many but there’s hope still)… so many young women in devastating situations. you are an incredible voice and champ for us young breast cancer people – thank you for sharing so bravely and i’m very glad i met you (online… )! XOXO

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