My goal in life is to see my two boys, who are now 5 and 7, graduate from high school. That might not seem like a lot, but at one point I wasn’t even sure if I would see them start kindergarten.
Around four years ago, when I was 38 and the kids were about 1 and 3, I noticed I was walking with a limp and had a lot of back pain. But I don’t like to complain, so I just kept going. Then one day, I was tandem breastfeeding my boys and I felt a lump in my breast. I wasn’t that surprised, because I had an overabundance of milk and had experienced lots of clogs in my milk ducts. I asked my lactation consultant about it, and she sent me to see my primary care doctor.
My primary care doctor wasn’t overly concerned, but because my mother was then a 13-year breast cancer survivor, I had a mammogram just to be safe. Having a mammogram while you’re breastfeeding is crazy—it was so painful, and I showered the machine with milk! They also did a diagnostic ultrasound that day, and then referred me for a biopsy. I had a hunch something might not be right, but I didn't let myself go into full on panic mode yet.
It was March 8, 2017 when I found out I had breast cancer, and after that it was like boom, boom, boom, things happened so fast. I had a lumpectomy and started chemo, and then a whirlwind of scans and appointments. I was soon told I had Stage IV metastatic breast cancer that had already spread through my blood to my bones. The reason I was limping was that there was a 5 cm tumor in the middle of my right femur—I was one bad step away from that bone shattering, and had to have surgery right away to place titanium rods into both of my thighbones.
I haven't had enough time with my kids! That was my very first thought when the doctor told me the median life expectancy for metastatic breast cancer is 2 to 3 years. They were so young that I was legitimately concerned that they wouldn’t even remember me. All I wanted was more time to spend with them.
How genetic and genomic testing extended my time with my babies
When I first was diagnosed, my breast surgeon did genetic testing for the BRCA 1 and 2 gene mutations, both of which substantially raise your risk of breast cancer. Those were negative. But once we realized how advanced my cancer was, I had the full genetic panel done. In 2017, there were 40 genes known to be associated with breast cancer. And it came up that I was positive for a mutation in the ATM gene, which not only increases the risk for breast cancer and pancreatic cancer in women, but also prostate cancer in men. Of course, I let everyone in my family know what my genetic testing found, and a lot of relatives have now tested for ATM. Several are positive, and a sister and cousin of mine had prophylactic (preventative) double mastectomies, which dramatically reduces their risk of breast cancer. Genetic testing really had a huge effect on my entire family.
The genetic testing also identified four somatic mutation (those caused randomly or due to environmental factors, not genetics), including PIK3CA. I was elated to learn that PIK3CA has an actionable treatment right now, but I’m glad that I know about the other ones, despite the lack of treatment options. It means I can watch for new medications that might help down the line. Luckily, there is lots of research in the works.
In August 2019, after two years on the first drug, a PET scan showed that my cancer had mutated and the drug I was using was no longer effective. Since I had already gotten tested for PIK3CA, I was able to start a brand-new drug that was targeted to that mutation right away. But after several months on that second drug, another scan showed that the cancer in my bones was becoming more metabolically active, so I added another drug to my regimen. There are a lot of side effects, but it’s worth it to keep my cancer in check.
My most recent PET scan showed that this combination of drugs is working. I am currently stable—my medical oncologist told me it was the closest I had come to being at No Evidence of Active Disease (NEAD). It was the best scan I’ve had in three and a half years.
Having cancer has dramatically changed my family dynamic
Cancer has definitely changed things. I was really active before my diagnosis, and my boys are very high-energy, but now we do a lot more sedentary things, like crafts and science projects—they love anything that’s really messy, like slime and paint. We live in Miami, so we also spend a lot of time in the pool, which is great, because they’re like little fish, and I do a lot of my physical therapy in the water. On days when I’m not feeling well, we have a lot of cuddles and snuggles in bed.
The hardest thing is that I can’t move too quickly or grab my kids if they run out in the middle of the street, so we have a baby-sitter to help with that. And since having cancer is just all-around challenging, about three years ago, my family moved in with my parents, so my mom can help out, too. My husband, Elliot, has also been amazing. He is so patient, loyal, consistent, and kind.
I’ve met the first big goal I set when I was diagnosed, which was to see both my boys enter kindergarten! Now we have 12 more years until my younger son graduates high school, and I’m feeling hopeful that a medication targeted to my body and my cancer will get me there.
You Might Also Like