Finding Out I Had Breast Cancer at 35

“Hi Lindy, do you have a couple minutes?” I immediately rushed to be alone in my childhood bedroom as I knew where this conversation was going. My kids and I had just arrived at my parent’s house about an hour prior for the Christmas holiday. Andy was stuck in Orlando due to a major Southwest Airlines screw-up and would arrive several hours later that night. So I sat alone in the bedroom I grew up in as my dear breast specialist, Beth, told me that the biopsy had surprisingly turned out to be invasive ductile carcinoma. They needed more time to determine which kind and what stage but she wanted to call me before Mayo was closed for the holidays so I could get my initial appointments scheduled. I was gutted. I called Andy before I left the isolation of my bedroom and told him, as he was sitting at the airport bar a thousand miles away, that I had breast cancer. Then I emerged from the room to see my mom standing in the foyer waiting to see what they said. I just nodded my head and started bawling into her shoulder as she hugged me (and my young children looked on in bewilderment).

I found out I had breast cancer on December 22, 2022. I was absolutely not expecting to receive that news, but it also wasn’t as completely shocking for me as it would be for most people at 35. I’ve known since sometime in late 2014 or early 2015 that I had a genetic mutation called BRCA2. This mutation, combined with my family history and my own physical attributes, gave me a roughly 80% chance of having breast cancer by the age of 60. I’d been seeing various breast specialists at Mayo Clinic and MD Anderson Hill Breast Center for almost nine years. I’ve had 4-5 MRIs, more mammograms, and even more ultrasounds done of both my breasts during those years. Surveillance when you are BRCA2 positive indicates alternating mammograms and MRIs every six months, but I’d been pregnant and nursing for over 4 years during that time period so I missed a bunch of imaging that otherwise would have occurred. All that to say, I thought about breast cancer a lot and did as much as I could to keep myself healthy and stay on top of the monitoring.

The thing is that I simply thought I had more time. The likelihood that you’ll get breast cancer is so extremely high with certain genetic mutations that many women decide to do prophylactic mastectomies, i.e. they have their breast surgically removed with or without reconstruction to prevent themselves from ever getting breast cancer. I’d been told that I could do something as soon as I was comfortable if I wanted to go that route, with urgency that I do something before the age of 45. I was planning to have a preventative mastectomy next winter, at 36 years old. I thought I was being a little radical doing something that far before turning 40, that maybe I should wait until my kids are older. I thought I had more time.

Oddly enough, my initial plan was to have a prophylactic mastectomy this past January 2023. However, the unexpected and relentless nature of my oldest son’s bone condition and my newfound love of running marathons, led me to push the plan back a year to 2024. (Clearly it didn’t ultimately go that way.). We’d let everything settle with our son and make sure we were on a good treatment plan with him, I’d squeeze in one more marathon in the fall, and then I’d buckle down and get the thing done.

Then last spring as I’d been training for my second marathon, I noticed an odd moisture on my sports bra after a training run. It looked like it’d come from my nipples and sure enough I was able to squeeze out what looked like colostrum from both breasts. I’d been done breastfeeding for almost exactly 2 years. I got very concerned and promptly messaged my breast specialist. It was not dark or bloody so they weren’t super concerned but went ahead and did an ultrasound to make sure they didn’t see anything suspicious. Nothing looked or felt off, so the likely cause was just the frequent friction on my chest from running. It truly was probably just that, but the extra stress and weirdness of it left me unsettled. I felt even more convinced that I’d schedule the mastectomy within a year or two.

Then a few months later I had my annual MRI in June. I did not get my usual, “all clear, see you in a year.” There was a TINY change in my MRI compared to my previous ones. The radiology team were mostly not worried about it but wanted me to follow up in 6 months so they could make sure it hadn’t changed more. I have very dense breast tissue, with profuse bilateral micro calcifications so I am fairly used to needing extra imaging or having concerned radiologists give me a phone call to make sure I am taking my risk seriously. (I was also focused on running my 2nd marathon in Charlevoix, Michigan on June 18th- ended up with a 30+ minute PR at 4:28. Woohoo!)

Shortly after my MRI, things with our son took a major turn last summer and he had his own couple of MRIs, bone surgery, and a possible new, scary-to-me diagnosis of CRMO. I basically forgot about any possibility that something might actually be wrong in my breast. My stomach also developed some issues again over the summer related to my Hashimoto’s causing me to have daily diarrhea and a loss of appetite. I eventually gave up coffee and the symptoms went away. Then I was focused on getting our son into a pediatric rheumatologist, figuring out how to take care of him, and keep him comfortable from bone pain which took us right into October. We had the busiest October-December, complete with trips for me to North Carolina, south Florida, and NYC. In NYC we ran the Ted Corbitt 15K and had such a good time running around Central Park that we signed up, spur of the moment to run the NYC marathon in 2023 as charity runners with Team For Kids. I was excited and felt confident about our son’s treatment plan, ready to train for NYC in November 2023 and then schedule my mastectomy for January 2024.

I had no idea that just a few days after we returned home, my six month follow up MRI on December 9th would change our lives. The area of concern from June had changed even more and they now wanted to biopsy the spot. It was still tiny but it was more pronounced on imaging than it had previously been. Several breast specialists and oncologists examined my breasts and not one of them could feel the area. I couldn’t feel any hard lumps either. The soonest they could get me in for an ultrasound guided biopsy was Dec. 21st. We moved our holiday travel back a day and waited.

I googled several times what the odds were of a biopsy being malignant and tried to remain confident. But in reality, I was really shaken up and so nervous. I felt like I was moving in slow motion, in a haze of confusion. Was this really happening to me? But I had more time! I was going to take care of things preventatively… This wasn’t how my story was supposed to go! It felt completely unreal, like a weird movie. Like I was watching my life unfold as an outside spectator.

The day of the biopsy I met my dear friend, Megan, for brunch before my appointment and it was a great encouragement. She’s a comforting presence in my life. I was still mentally trying to reassure myself constantly. Statistically the odds were in my favor- most people’s breast biopsies don’t end up being cancer. So if you’re just looking at percentages, then I was good. I also knew that having the BRCA2 mutation probably upped my percentages but I don’t love unnecessary drama, so I didn’t want to make a big deal out of it when it could be nothing.

The biopsy procedure was on Dec. 21, 2022 and, honestly, it hurt more than I was anticipating. They numb the area but I don’t know if it’s because I had fairly large boobs for my petite 5’2” self, or just the nature of the core needle biopsy… But it doesn’t feel great. Boobs move around when they insert the needle, so it’s trickier than I realized to keep the image in view when the spot is as small as mine was. I held the nurses hand, laid on the table, and just prayed that they would have the ability to see whatever was found on the MRI. I prayed that if there was anything there it would be found. I just wanted to know and get it out if it was there. I wanted to have peace regardless. The radiologist did find the area and told me that it was extremely tiny. After taking 3-4 samples (which feel like the tiniest punches or moments of small but powerful pressure deep in the breast tissue), she placed a clip and sent me to the mammogram in the room next door. It’s highly unfortunate that they must check the clip placement right after puncturing your boob, but alas that’s how it goes. The mammogram people were amazingly gentle about it. The radiologist was really kind and felt confident that it was a clogged duct and to not let worry ruin my holidays. They said most results don’t come back for three days and that Mayo would be closed for Christmas break by then, so to not worry if I didn’t hear anything until December 26th or 27th. I left feeling at peace and confident that I was all worked up over nothing.

It wasn’t nothing. Eventually I found out it was stage 1, hormone positive, HER2 negative invasive ductal carcinoma. Great prognosis if you have to have breast cancer, but still scary as hell. I debated and read and asked around- should I stay at Mayo for treatment or switch back to MD Anderson Hill Breast Center or travel for care? I felt so suffocated in the waiting and trying to feel 100% positive that I was making the absolute best decision on where to be treated. Then I met Melissa. She walked this road a couple years prior and met me at a Starbucks to share her story and let me ask ALL the questions. Her peace and grace and openness totally calmed me down. It was truly akin to a spiritual encounter. She had actually gone elsewhere for treatment, but I left our chat feeling confident. If I felt at peace with my Mayo team before my diagnosis, I could continue to trust them as I walked down this road I hadn’t planned on.

***I wrote two blog posts about what was going on in our lives the few years leading up to my diagnosis, because if there’s anything you know after finding out you have cancer… it’s that it doesn’t happen in a vacuum. It feels like the world should shut down or everything might just stop, but it doesn’t. Everything keeps happening and it felt important to me to give context to just how hectic our prior couple of years had been with simply the health stuff, not to mention the good hectic things like soccer, ballet, running, school, church, friends, etc.