Pregnant with Breast Cancer: How to Advocate for Yourself When Fighting for Two

Halloween day 2017 was the scariest day of my life. It wasn’t due to any make-believe monsters jumping out at me from a haunted house or from receiving a spooky call in a dark downstairs room, like you watch in the movies. This was much scarier because the phone call I did receive was so real, it paralyzed me.

My doctor, who had excitedly confirmed my pregnancy with my third child just two weeks earlier, had just called me to confirm that I also had stage 3 breast cancer.

Wait a minute. What?

The days and weeks following were a blur as countless blood tests and scans were done to help determine how far the cancer had spread. My medical team discovered that it was already in my lymph nodes and quickly spreading. They threw out all kinds of numbers related to survival rate, recurrence rates, and a ki67 number, which indicates how quickly the tumor is growing.

For reference, a result of less than 10 percent is considered low, 10 to 20 percent borderline, and high is more than 20 percent. My number was greater than 99 percent, meaning my cancer cells were rapidly dividing and forming new cells as I tried to make a decision.

The earliest I could begin treatment wouldn’t be for another seven weeks, since chemo isn’t deemed safe for a fetus until the second trimester.

The easiest and most logical option according to the team, was to terminate the baby so that I could immediately begin treatment.

I was devastated.

I was a ball of nerves as we did our first ultrasound, shaking from fear of what they would tell me about the baby when they hooked me up to the monitor. And then, clear as day, I heard his tiny heartbeat loud and steady. I turned to my husband, and we both just knew. I didn’t care if everything was stacked against us. I was no longer obsessed with numbers, or protocols, or giving into fear. That little dot on the screen, accompanied by that little heartbeat, whispered ‘I am hope.’ That feeling of hope is what carried us through every decision going forward. I would be that baby’s hope and he would be mine.

Below are some of the biggest takeaways that helped me advocate for myself and the baby.

Ask Questions, Lots of Them

I’m an ICU nurse and my husband is the educator for a flight nursing program. Most people think we have the answers for everything. But guess what? We most definitely DON’T. Sure, we did plenty of research about what to expect (aka Dr. Google), but there is no substitute for asking your medical team directly. And don’t be afraid of "offending" the doctor by asking your questions.

That’s precisely their job. They understand that cancer in itself is overwhelming, and you may need to ask the same thing several times before the answer sticks —especially with pregnancy brain or chemo brain.

I asked point blank questions like: How many pregnant patients have you treated? How did you come up with my treatment plan (where did you get the research from, specifically)? How confident do you feel taking care of me, while keeping my baby’s health in mind at all times?

No question is too small, too silly, or too direct when it comes to your health and your baby's health.

If You’re Unsure, Get a Second Opinion

I was lucky enough to live in a city that had one of the top-rated cancer centers in the world. I just assumed that everything was top-notch and while the majority of the doctors were phenomenal, there was one that I had reservations about. She was very professional and knowledgeable but something just didn’t feel right.

I brought my sister along with me to my next visit to help me decide if this breast surgeon was the right fit for me. The visit was a pretty routine one and the doctor was nice enough and answered all of our questions. But when we left, my sister turned to me and said, “Do you feel like you’re just another patient?"

Although these doctors deal with cancer everyday, this is a life-altering event for YOU. You need someone that you feel a connection to with whom you feel that you could trust with your life ... literally. I immediately got a recommendation from a family member for another surgeon. As I stepped foot into the new office, I could immediately feel that this was the right one. The doctor came in, took my hands in hers and said "It’s so nice to meet you. I can’t imagine how hard this must be for you but I’m so honored to help care for you."

Needless to say, if something isn’t quite sitting right with you, it’s perfectly okay to find another doctor (even within the same hospital/clinic). It's very likely that your intuition will be right, and you’ll end up with a doctor who is more aligned with you.

Don’t Forget That Your Voice Matters

It's one thing to navigate your own diagnosis and be unsure of how to speak up for yourself. It can be entirely new to also speak up for someone who can't yet do so for themselves.

When they decided to use anesthesia to place my port, I asked if they could use a lighter sedation and bring a doppler to check on the baby before and after. When they wanted me to deliver the baby at 34 weeks, I argued that the baby would be better off if he was full-term and had the maternal fetal specialist call my obstetrician directly to discuss options.

Of course every situation is different, but your voice matters when it comes to your body.

Tune Out the Noise and Listen to your Gut

When you’re diagnosed with cancer, everyone has an opinion. Your doctors. Your nurses. Your family. Your friends. Your church. Your neighbors. Your nail lady. And guess which one should be the ONLY one that matters? YOURS.

"We shouldn’t risk the cancer spreading and could start treatment right away if you terminate the baby now."

"Keep the baby, but don’t do the chemo. Just eat this diet I heard about and you will have a good chance of being cured."

"Why risk a beautiful life with your two kids and hubby? The baby might not make it. YOU might not make it. It would be easier to have one less thing to worry about."

Suddenly, the optimistic person I had always been became a worrier. I worried if the baby would make it. If I would make it.

Would my husband end up a widow with two young kids? Would my kids remember who their mother was?

I also worried that if everyone knew I was pregnant and I went through chemo and lost the baby, I would be blamed for killing him. I worried that if I didn’t keep the baby, that karma would get me back and I wouldn’t be cured of the cancer.

And then one day, I just couldn’t worry anymore. It was too much weight to bear. The day I heard that heartbeat, I made a decision that I had already known deep down in my gut was the right one. I let my faith carry the rest.

Twelve chemo treatments later, a perfect baby boy was born.

His name is Liam Von, or ‘warrior and protector’ of ‘hope.'

Gretchen pictured with her family and newborn son, Liam Von. Photo courtesy of Gretchen Lee